Children's Health and Children's Rights

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Children’s Health and Children’s Rights

Children’s Health and Children’s Rights

edited by

Michael Freeman

MARTINUS NIJHOFF PUBLISHERS LEIDEN/BOSTON

A C.I.P. record for this book is available from the Library Congress.

Printed on acid-free paper.

ISBN-13: 978-90-04-14894-9 ISBN-10: 90-04-14894-9 © 2006 by Koninklijke Brill NV, Leiden, The Netherlands Koninklijke Brill NV incorporates the imprints Brill Academic Publishers, Martinus Nijhoff Publishers and VSP. http://www.brill.nl All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microﬁlming, recording or otherwise, without written permission from the Publisher. Authorization to photocopy items for internal or personal use is granted by Brill Academic Publishers provided that the appropriate fees are paid directly to The Copyright Clearance Center, 222 Rosewood Drive, Suite 910, Danvers MA 01923, USA. Fees are subject to change. Cover photograph © ANP, The Netherlands. Printed and bound in The Netherlands.

Contents Preface ..................................................................................................

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Children’s Health and Children’s Rights: An Introduction .................. Michael Freeman

1

Listening and Responding? Children’s Participation in Health Care within England .................................................................................. Anita Franklin and Patricia Sloper

11

The Participation Rights of Premature Babies ...................................... Priscilla Anderson, Joanna Hawthorne and Margaret Killen

31

Children and Research: A Risk of Double Jeopardy? ............................ Lynn Hagger and Simon Woods

51

Of Newborns and Nubiles: Some Critical Challenges to Children’s Rights in Africa in the Era of HIV/Aids ............................................ Julia Sloth-Nielsen Rights of the Autistic Child .................................................................. Rosalind Ekman Ladd Caring for Children with Severe Disabilities: Boundaried and Relational Rights .............................................................................. Jo Bridgeman

73

87

99

Adolescent Gender Identity and the Courts .......................................... 121 Melinda Jones Anorexia Nervosa and its Moral Foundations ...................................... 149 Simona Giordano Short Changed? The Law and Ethics of Male Circumcision ................ 161 Marie Fox and Michael Thomson

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CONTENTS

Communication for Abandonment of Female Genital Cutting ............ 183 Neil Ford Rethinking Gillick ................................................................................ 201 Michael Freeman Frail Connections: Legal and Psychiatric Knowledge Practices in U.S. Adjudication over Organ Donations by Children and Incompetent Adults ................................................................................................ 219 Marie-Andrée Jacob Minors and Euthanasia .......................................................................... 255 Debbie Mannaerts and Freddy Mortier Our Inheritance, Our Future: Their Rights? .......................................... 279 Sheila A.M. McLean and J. Kenyon Mason Predictive Genetic Testing in Children and Respect for Autonomy ...... 297 Philippa Malpas Deﬁning Parenthood ............................................................................ 311 Bonnie Steinbock

Index .................................................................................................... 335

Preface This book has grown out of a Special Issue of the International Journal of Children’s Rights, which was published as a double issue in the summer of 2005. The book omits a book review: for this readers are referred to the journal. But it includes an article on children and euthanasia – a live issue in Belgium and the Netherlands and surely elsewhere in the near future – which it was not possible to include in the Special Issue of the journal. The Introduction takes account of this as it does more fully of Neil Ford’s article on female genital cutting (this was inserted in the journal at the last moment after the Introduction to the journal issue had been set). The International Journal of Children’s Rights is now into its thirteenth year. It is the leading journal on the subject and has had a formative inﬂuence on the developments of thinking about children’s rights. It is right here to pay tribute to Philip Veerman whose inspiration it was. The journal has had Special Issues before; for example on child sexual abuse, on food and nutrition rights and on children in Africa. But this is the ﬁrst to form a separate book. The next Special Issue planned will examine children’s rights in post-communist Eastern Europe: this is scheduled for early 2007. Children rights and their health has been a neglected subject. There are now three monographs (by Alderson, Ross and Miller – the latter two books have been reviewed in the journal), and the editor of the journal (and of this book) has compiled a collection of materials on ‘Children, Medicine and the Law’. This was published by Ashgate early in 2005. This book contains an extensive bibliography to which those interested in the subject may refer. From this it will be observed that there is a range of articles across disciplines on issues of health and medicine in relation to children and their rights. The subject is an evolving one and this is reﬂected in this volume with discussions of subjects like euthanasia and gender identity which would not have been found in the literature until relatively recently. This book contains a wide range of articles on a diverse set of subjects. The articles come from a range of disciplines and from several countries. The volume should stimulate debate on children’s issues and contribute to the development of policy. The Special Issue and this volume underwent a lengthy gestation period. There were articles which do not appear in this volume which were commissioned and promised – some of these may ﬁnd their way into subsequent issues of the journal. I want to thank all those who assisted me in the production of this book. Lindy Melman at Brill encouraged me to produce the Special Issue and saw the

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opportunity to turn it into a book. Leonieke Aalders, also at Brill, was particularly helpful in bringing the project to fruition. And Priscilla Saporu, my secretary and personal assistant for much of 2005, was invaluable. Without her organisational skills, I doubt if this volume would have appeared. I must also thank the authors. All of them are donating their fee for contributing to this volume to UNICEF’s vaccination programme. Some children will thus beneﬁt directly from the production of this book. But we hope children generally will gain from the discussion of the issues in this book. Michael Freeman

Children’s Health and Children’s Rights: An Introduction MICHAEL FREEMAN Faculty of Laws, University College London

Despite the more prominent focus on children’s rights today, reﬂected in and stimulated by the International Journal of Children’s Rights, relatively little attention has been given to children’s rights in the health care area. There are now three monographs,1 and there is increasing discussion in books on children’s rights.2 The questions that can, and have, been raised are many. They include – who decides whether a sick child should be treated (doctors, parents, the child, courts)?3 – when is a child competent to decide upon treatment (at a certain age or when capable of making the decision)?4 – if a child can agree to treatment, can s/he also refuse treatment (a blood transfusion, an abortion, a heart transplant)?5 – should grossly premature babies be saved?6 – should severely disabled new-born babies be kept alive or allowed to die?7 – can anorexic adolescents be force-fed?8 – can children donate organs to siblings?9 – should parents be allowed to use pre-implantation genetic diagnosis in order to have a child to save an existing sick child?10 – should parents be allowed to sanction non-therapeutic surgical procedures?11 – is the genetic screening of children legitimate?12 – can healthcare and education be separated (for example in the case of the autistic child)?13 – Whether a child should be permitted the right to have his/her life terminated by euthanasia14 Many of these issues, and several others, are discussed in this collection. The essays by Franklin and Sloper and by Alderson and her colleagues focus on participation rights. The U. N. Convention on the Rights of the Child is pivotal to this (Van Bueren, 1995; Kufeldt, 1993, Prout, 2000, Smith, 2002, Sinclair, 2004). The case for children’s participation has now been made. But, as Franklin and Sloper point out, children are given ‘little voice’ in medical consultations and are rarely consulted as partners in the evaluation and planning of health services15 whether a child should be permitted the right to have his/her life terminated by euthanasia. They use a model developed by Alderson and Montgomery (1996) which indicates four levels at which children can participate: being informed, expressing a view, inﬂuencing a decision; being the Michael Freeman (Ed.), Children’s Health and Children’s Rights, 1–10. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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main decider. It is doubtful whether information needs are met. Equally doubtful is whether adequate mechanisms exist to allow children and young people to express their views. There are obvious barriers which obstruct participation, one of which is the way we view children.16 And children are not all alike. Leaving aside obvious differences of age, there are ethnicity and gender differences and, of course, disabled children raise a different set of issues (Cavet and Sloper, 2004). Franklin and Sloper discuss these questions within the context of England. Are things better elsewhere? The article by Alderson, Hawthorne and Killen expands our thinking about participation rights into new terrain, that of premature babies. Alderson (2000) had already explored young children’s and babies’ rights, quoting Trevarthen (1999). ‘It is clear from the beginning that children have a driving motivation to become part of a meaningful world. They want roles. They want to have tasks, they want to share interests, they want to have possessions, they like being able to share things with other people, they like to be able to share purposes and functions’.17 (see also Mayall, 1993)

In the article in this collection the rights of premature babies are explored using the U.N. Convention framework. They offer a valuable corrective to the new orthodoxy, represented by Harris (1985) and Singer (1995), that babies are nonpersons. Alderson and her colleagues note that although the right to life is often discussed as if it is something ‘adults allow or support’ and ‘babies receive’, ‘many premature babies put much energy and concentration into surviving as if, consciously or not, they value their life’.18 The article offers insights also into participation rights. The authors stress the ways that even premature babies can exercise their Article 12 rights. And ‘Countless observed and reported examples in the four NICU showed that many adults were convinced that they were not mechanically caring for the unconscious organisms that some philosophers allege babies to be. Instead, they were interacting within human relationships inﬂuenced by the babies’ views’.19

There has been much heart searching in the past on the issue of research with children. The Ramsey-McCormick debate was especially signiﬁcant (Ramsay, 1976, 1977; McCormick, 1976). Ramsey argued that children should never participate as research subjects in ‘non-therapeutic research’. Participation, he argued, required informed consent which children could not give. Nor did he believe that parents as ﬁduciaries could authorise their child’s participation without being in breach of their duties. McCormick thought that parental consent was ‘morally valid insofar as it is a reasonable presumption of the child’s wishes’ (1974, p.11). To McCormick there are certain identiﬁable values that we ought to support because they are deﬁnitive of our ﬂourishing and wellbeing, and children would choose (if they could) to participate. Ramsey’s

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response was that if McCormick were right ‘anyone – and not only children – may legitimately be entered into human experimentation without his will’ (Ramsey, 1976, p. 24). Ramsey also adduced that Kantian objection that using children as research subjects used them as ‘means’ and not as ends in themselves.20 The paper by Hagger and Woods takes up these issues and considers them further. They accept the vulnerability of children, but also the need for drugs to be tested upon them, and argue the case accordingly for safeguards, though they express concern that these should not prevent the recruitment of a sufﬁcient number of children into a study. They consider that research regulation to be too paternalistic, and advocate a ‘more robust approach to allowing children to engage in non-therapeutic research’ and claim this is ‘ethically defensible’.21 The HIV/AIDS pandemic post-dates the U.N. Convention, as Sloth-Nielsen points out. But implications for children and their rights are profound, and a recent General Comment by the U. N. Committee on the Rights of Child has addressed these. It alerts us to four principles in the Convention (non-discrimination, best interests, the right to survival and development, and the right to have views respected). There are, however, deeper questions, such as the contradictions between rights to survival and development on one hand, and non-discrimination on the other hand, and it is these that Sloth-Nielsen addresses. There is little discussion today in Europe or the U.S. of mandatory testing for HIV infection (O’Brien, 1989 and Childress, 1991) but the issue remains a live one in Southern Africa. There are issues of consent to testing too, particularly in AIDS-ravaged countries where there may be no one to consent to a child being tested. The Nigel Redman case,22 which Sloth-Nielsen discusses, offers interesting insights into the dilemmas raised. The next two papers deal with two very different problems related to disability. Ladd examines the rights of the autistic child. Autism raises real problems. Is ‘assistance’ of the autistic child treatment or special education? Does an autistic child have the right to treatment or to be left alone? And what of the right (in Article 19 of the Convention) not to be subjected to physical punishment? Is this an absolute right (Newell, 1989; Miller 1987) or is it qualiﬁed when it is the only way of preventing self-injurious behaviour? These are important questions which existing literature has tended to gloss over or ignore. Bridgeman looks at the treatment of children with severe disabilities, concentrating in particular on the Glass case heard by English and European courts in the last couple of years.23 The Glass case illustrates the way the law can create conﬂict between professionals and parents when, as Bridgeman argues, ‘it should create a framework which supports and encourages them to work together’24 (which is exactly the ‘partnership’ ideal embodied in English

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child care law).25 Bridgeman appropriately questions what is meant by a ‘severe’ disability,26 pointing out that the earliest cases were about Down’s Syndrome babies (then designated mongols) which, only a generation ago, was regarded as so severe that some thought such babies should be allowed (even assisted) to die.27 One of the lessons to emerge from the Glass saga is that in a battle between family and medical personnel (and as you will see it became a battle literally), the rights of the child can be given less attention that they deserve. It is striking how little emphasis there is on the U. N. Convention in cases like Glass, or in the high-proﬁle cases which have followed.28 Jones looks at yet another relatively new question: adolescent gender identity. She focuses on two recent Australian decisions, Re A and Re Alex29 which concern young people extremely distressed about their gender identity who wanted gender reassignment. The cases raise issues regarding the rights of the child to consent to gender reassignment, and also about the role of the courts in such applications. A was inter-sex; A was female but suffered from gender dysphoria. Both cases raise interesting rights issues, most signiﬁcantly that relating to identity (and see Article 8 of the U. N. Convention). Neither child was found to be Gillick-competent, thus depriving us of discussion as to whether a Gillick-competent child could consent to gender reassignment. Even so Chief Justice Nicholson thought it right to distinguish using contraceptives from changing sex.30 Indeed, he was of the view that such a decision could not be taken ‘until the young person reaches maturity’ (by which I suspect he means ‘majority’). Other jurisdictions are bound to be confronted with these issues. Perhaps with the even more difﬁcult one of a child who refuses gender reassignment when parents (or a court) thinks this is in his/her best interests.31 It is in connection with refusing treatment that the adolescent anorexic has troubled the courts. The next article in this collection examines anorexia nervosa from a rather different perspective. Giordano offers an understanding of anorexia in terms of the mind/body dualism. In the mind-body split, the body is insigniﬁcant. As she points out: ‘Within an ethic that demands the submission of the ‘physical’’, . . . . control over one of the most pressing physiological impulses, hunger, is praised’.32 Giordano argues that anorexia is not a response to the pressure to be thin operated by the media. This is, she argues, ‘a disgraceful minimisation of the complex psychological, social and cultural backgrounds that inform the sufferers’ behaviour. The ﬁght against fat is a ﬁght for control, a crusade for moral afﬁrmation, for integrity and perfection’.33 With this understanding, a decision like that of the English Court of Appeal in Re W 34 becomes all the more unfathomable. The article by Fox and Michael Thomson offers a critique of routine neonatal male circumcision. Although defences of this are still found in contemporary literature (Freeman, 1999; Bridge, 2002; Benatar and Benatar, 2003) and English courts for one have accepted its lawfulness,35 this practice has been

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subjected to widespread condemnation. Some would even equate it with female genital mutilation.36 Fox and Thomson are concerned with the way that, despite the harms they identify which are associated with this practice, parental choice is privileged. Routine neonatal male circumcision has declined and may now be found to exist only amongst those committed to circumcision as a fundamental religious practice. Non-therapeutic and non-consensual circumcision, when not mandated by religion and not justiﬁed by the needs of cultural identity, cannot be defended. Whether it is child abuse, as some claim (Miller, 1990; Feldman, 1993, 158–160) is more dubious. Ritual male circumcision has to be looked at differently. Far from it constituting abuse, it is arguable that the failure by Jewish or Muslim parents to circumcise their sons is a form of abuse, with the child being likely to suffer ‘signiﬁcant harm’.37 Fox and Thomson do not consider Article 8 of the U. N. Convention which requires respect for the child’s identity: nor do they note its Preamble which refers to ‘the importance of the traditions and cultural values of each people for the protection and harmonious development of the child’. Ford examines a new approach to female genital mutilation (or cutting). He points out that previous strategies, such as laws criminalising it, have had little effect. There have, of course, been well-publicised prosecutions, particularly in France. He, therefore, directs our attention to a new approach which adopts a non-directive social change process and places human rights communication within it. Rather than seeing laws as initiating social change, he urges that they should be used to ‘ratify success once a tipping point has been achieved’. He cites the precedent (from 100 years ago) of the Chinese practice of foot binding and the way this was ended. That took barely a decade after public discussion emerged within Chinese society, and augurs well in relation to female genital cutting. He does not discuss the issue in relation to ethnic minorities in ﬁrst world countries (the United Kingdom or France, for example). Whether discussion and communication will work in such marginalized communities is debatable but should not be ruled out. The next article by Freeman rethinks Gillick. It examines the retreat from the 1985 decision in a succession of cases where children have refused treatment and calls for a new Gillick which puts goals and values in the forefront and places less emphasis on knowledge and understanding (and see Alderson and Goodwin, 1993). Jacob’s wide-ranging paper focuses on how legal texts are built. She examines the contribution of psychiatrists and others to the normalisation of organ transplants involving children and also incompetent adults. This is an investigation of how legal actors come to argue, determine and reform what is good, acceptable or illegitimate use of medical technologies. Although it is about organ donations by children, the thesis has implications across a wide range of medico-legal questions and not just those that affect children and incompetent

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adults. As she acknowledges, it may cast light for example on the ‘saviour sibling’ debate ‘on whether it is morally right to procreate a child in order to save the life of an existing one’ which is currently emerging (and see Freeman, 2006, forthcoming). Mannaerts and Mortier debate one of the most controversial issues relating to children and their health: should children be permitted to request that their lives be ended by active euthanasia? This is not – or not yet – an issue in most of the world where active euthanasia is not permitted. But it is a live issue in the Netherlands and in Belgium. Both of these countries permit active euthanasia for adults in carefully-regulated circumstances, and Netherlands allows this also for children of 12 and above (parental agreement being required for those under 16). Belgium does not. Mannaerts and Mortier argue the case for allowing euthanasia for minors. In England children – for these purposes those under 18 – cannot even refuse treatment. Of course, in any system in which they can – and Belgium is one – it is illogical to allow this, and in effect passive euthanasia, and not permit a child the opportunity to request a quic rather than long drawn out and undigniﬁed death. The next two articles by McLean and Mason and by Malpas focus on genetic testing. McLean and Mason examine a recent UK Government White Paper,38 in particular its proposals relating to the genetic testing of children. There are those who fear the detrimental potential of genetic information (on insurance, for example, or as regards discrimination). Others see instead the possible beneﬁts of genetic knowledge to the family, including the child. McLean and Mason argue that the negative consequences of obtaining the information may ‘far outweigh any beneﬁts achieved’.39 They have a concern with the possibility that proposals could be considered as ‘an encouragement to selective elimination of the disabled’.40 Their main concern though is with the rights of children. They have concern about the possible effects on children’s rights of intrusive, non-therapeutic interventions which, they warn, could become a reality if genetic proﬁling at birth is routinised. ‘Their rights [must] not be compromised by our technological capacities. . . .’41 Malpas, by contrast, sees compelling reasons to test. Her argument is that ‘the beneﬁts for autonomy’s development in terms of enabling the child to begin to make plans and decisions about their own future. . . . trumps the child’s future decision not to know’.42 But what if the results are unfavourable, showing in effect a blighted future? That there is at least closure is hardly a healthy response. Wertz reported some ten years ago that US genetics professionals were receiving parental requests to test children for genes for Huntington’s chorea because they wanted to know whether or not they should set aside money for college tuition (see Wertz, 2002, 94). Malpas assumes that if children were competent to take the decision to be tested they would do so.

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But most adults, when offered testing for themselves, decide they do not want to know (e.g. Tyler, et al., 1992; Flinter et al., 1992). You have to know who you are to be able even to speculate about your future. Steinbock, in the ﬁnal paper in this collection, raises questions about parenthood. The reproduction revolution has made us have to rethink concepts previously taken for granted. There have always been disputes as to with whom a child should live, but rarely at least as to maternity. Now that there may be competing ‘claims’ both as to who the mother is and who the father is – there could, Steinbock notes, be six contenders for the role of parent – questions have begun to be raised as to the basis of parenthood (see e.g. Shanley, 2001). But the problem is, as Steinbock acknowledges, ‘not framing the issue in terms of competing individual rights, but rather that the rights of children are too often given short shrift’.43 Of course, this only pushes the question into the further one of asking which rights children have in these complex areas. Do they have a right to the truth – to know their identity – or do they want a secure environment? But even this is not a complete answer, for some may want one and some the other, and some both. And even an emphasis on identity begs questions for it can be deﬁned genetically, gestationally and socially. What is in a child’s interests? Could it be, as Steinbock suggests, to admit that s/he has a plurality of parents?

Notes 1 By Alderson (1993), Ross (1998) and Miller (2003). Freeman (2005(a)) contains a very full Bibliography. 2 For example, Fortin (2003), ch. 5. See also Alderson and Montgomery (1996). 3 See Freeman (2000(a), 2001). 4 The Gillick case [1986] AC 112 is seminal. And see Franklin and Sloper at pp. 7–25 and Alderson et al., at pp. 27–46. 5 An issue very much to the fore in England in the retreat from Gillick. See Freeman, pp. 178–195. 6 See Wyatt (1998) and Alderson et al., pp. 27–46. 7 An early discussion, still important, is Kuhse and Singer (1985). See Bridgeman at pp. 95–115. 8 See Draper (2000) and Giordano at pp. 145–156. 9 See Ross, L.F. (1998). 10 See Robertson (2002), Sheldon and Wilkinson (2004), Freeman (2006, forthcoming). 11 This has been raised in such different areas as sterilisation of the learning disabled (Freeman, 1988) and circumcision (Benatar and Benatar, 2003; Bridge, 2002). The latter is discussed by Fox and Thomson at pp. 157–177. 12 See Robertson and Savulescu (2001), Ross (2002), Hoffmann and Wulfsberg (1995). And see McLean and Mason, pp. 233–250. and Malpas, pp. 251–263. 13 See Ladd, pp. 83–94. The question might also be raised in relation to housing or social security and health care.

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See Mannaerts and Mortier, xxxx. See p.10. 16 See p.17. Some light is thrown on this by the events in the Bristol Royal Inﬁrmary and the Alder Hey Hospital in Liverpool (and see Bridgeman, 2002). 17 See Alderson (2000, p. 26) quoting Trevarthen (1999), himself quoted in D. Purves and D. Selleck, Tuning into Children, BBC. 18 See p. 35. 19 See p. 41. 20 This argument is common in the current controversy over saviour siblings (see Freeman, 2006, forthcoming). 21 See p. 57. 22 Ex parte Nigel Redman NO (unreported 03/14083): see p. 78. 23 R v. Portsmouth Hospitals NHS Trust ex parte Glass [1999] 2 FLR 905; Glass v. United Kingdom [2004] 1 FLR 1019. 24 See p. 97. 25 See Children Act 1989. Partnership is more deeply embodied in some other systems (I discuss this at Freeman, 2000(b)). 26 See p. 97. See also Huxtable and Forbes (2004). 27 See R v. Arthur (1981) 12 BMLR1; Re B (Baby Alexandra) [1981] 1 WLR 1421. 28 The Charlotte Wyatt and Luke Winston-Jones cases, reported at [2005] 1 FLR 21 and [2005] 1 FLR 491 respectively. 29 (1993) 16 Fam LR 715; [2004] Fam CA 297. 30 [2004] Fam CA 297 at para. 173. 31 And see Freeman at pp. 179–195. 32 See p. 151. 33 See p. 154. See also Freeman at p. 186. 34 Re W is discussed at pp. 184–186. 35 See Re J [2000] 1 FLR 571; Re S [2005] 1 FLR. 36 Boyd (1998) and Gollaher (2000) argue it has common origins. See further Freeman, 1995. 37 English law deﬁnes abuse in terms of ‘signiﬁcant harm’ (Children Act 1989 s.31(2)). 38 See also now Human Genetics Commission (2005). 39 See p. 247. 40 Ibid. 41 See p. 248. 42 See p. 261. See also Clayton, 2002. 43 See p. 278. 15

References Alderson, P. (1993) Children’s Consent To Surgery, Buckingham, Open University Press ——— (2000) Young Children’s Rights, London, Jessica Kingsley. Alderson, P. and Goodwin, M. (1993) ‘Contradictions Within Concepts of Children’s Competence’ International Journal of Children’s Rights, 1, 303–314. Alderson, P. and Montgomery, J. (1996) Health Care Choices: Making Decisions With Children, London, Institute for Public Policy Research. Benatar, M. and Benatar, D. (2003) ‘Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision’, American Journal of Bioethics, 3(2), 35–48.

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Boyd, B. R. (1998) Circumcision Exposed: Rethinking A Medical and Cultural Tradition, Freedom, California, The Crossing Press. Bridge, C. (2002) ‘Religion, Culture and the Body of the Child’ in (eds.) A. Bainham et al., Body Lore and Laws, Oxford, Hart. Bridgeman, J. (2002) ‘After Bristol: The Healthcare of Young Children and the Law’, Legal Studies, 23, 229–250. Cavet, J. and Sloper, P. (2004) ‘Participation of Disabled Children In Individual Decisions About Their Lives’, Children and Society, 18, 278–290. Childress, J. (1991) ‘Mandatory HIV Screening and Testing’ in (ed.) F. Reamer, AIDS and Ethics, New York, Columbia University Press, 50–76. Clayton, M. (2002) ‘Individual Autonomy and Genetic Choice’ in (eds) J. Burley and J. Harris, A Companion to Genethics, Oxford, Blackwell, 191–205. Draper, H. (2000) ‘Anorexia Nervosa and Respecting A Refusal of Life-Prolonging Therapy: A Limited Justiﬁcation’, Bioethics, 14, 120–133. Feldman, D. (1993) Civil Liberties and Human Rights in England and Wales, Oxford, Oxford University Press. Flinter F. A., et al. (1992) ‘Population Screening For Cystic Fibrosis’ Lancet 339, 1539– 1540. Fortin, J. (2003) Children’s Rights and the Developing Law, London, Butterworths (2nd ed). Freeman, M. (1988) ‘Sterilising the Mentally Handicapped’ in M.D.A. Freeman, Medicine, Ethics and Law, London, Stevens. ——— (1995) ‘The Morality of Cultural Pluralism’ International Journal of Children’s Rights, 3, 1–17. ——— (1999) ‘A Child’s Right To Circumcision’, British Journal of Urology International 83, Supplement 1 74–78. ——— (2000(a)) ‘Can We Leave the Best Interests of Very Sick Children To Their Parents?’ in (eds.) M. Freeman and A. Lewis, Law and Medicine, Oxford, Oxford University Press. ——— (2000(b)) ‘The End of the Century of the Child?’ Current Legal Problems 53, 509–558. ——— (2001) ‘Whose Life Is It Anyway?’ Medical Law Review 9, 259–280. ——— (2005 (a)) Children, Medicine and the Law, Aldershot, Ashgate. ——— (2005 (b)) ‘The Truth About Fathers’ in (ed.) J. Spencer, forthcoming. ——— (2006) ‘Saviour Siblings’ in (ed.) S. McLean, Essays in Honour of J. Kenyon Mason, Oxford, Hart, forthcoming. Gollaher, D. L. (2000) Circumcision: A History of the World’s Most Controversial Surgery, New York, Basic Books. Harris, J. (1985) The Value of Life, London, Routledge, Kegan Paul. Hoffmann, D. and Wahlsferg, E. (1995) ‘Testing Children for Genetic Predispositions: Is it in their Best Interest?’ Journal of Law, Medicine and Ethics 331–344. Human Genetics Commission (2005) Proﬁling the Newborn: A Prospective Gene Technology www.hgc.gov.uk (March 2005). Huxtable, R. and Forbes, K. (2004) ‘Glass v. U.K: Maternal Instinct v. Medical Opinion’, Child and Family Law Quarterly, 16, 339–344. Kuhse, H. and Singer, P. (1985) Should The Baby Live? The Problem of Handicapped Infants, Oxford, Oxford University Press. Kufeldt, K. (1993) ‘Listening to Children: An Essential For Justice’, International Journal of Children’s Rights, 1, 155–164. Mayall, B. (1993) ‘Keeping Children Healthy’, Social Science and Medicine, 36, 77–84.

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Miller, A. (1987) For Your Own Good: The Roots of Violence In Child-Rearing, London, Virago. Miller, R. (2003) Children, Ethics and Modern Medicine, Bloomington, Indiana University Press . Newell, P. (1989) Children Are People Too, London, Bedford Square Press. O’Brien, M. (1989) ‘Mandatory HIV Antibody Testing Policies: An Ethical Analysis’, Bioethics, 3, 273–300. Prout, A. (2000) ‘Children’s Participation: Control and Self-Realisation in British Late Modernity’, Children and Society, 14, 304–315. Ramsey, P. (1976) ‘The Enforcement of Morals: Non-Therapeutic on Children’, 6 Hastings Center Report 21. ——— (1977) ‘Children As Research Subjects: A Reply’, 7 Hastings Center Report 40. Robertson, J. and Savulescu, J. (2001) ‘Is There A Case in Favour of Predictive Genetic Testing in Young Children?’, Bioethics 15, 26–49. Robertson, J., and Kahn, J. and Wagner, J. (2002) ‘Conception To Obtain Haematopoietic Stem Cells’, Hastings Center Report 32(3), 34–40. Ross, L.F. (1998) Children, Families and Health Care, Oxford, Clarendon Press. Ross, L.F. (2002) ‘Predictive Genetic Testing for Conditions That Present in Childhood’, Kennedy Institute of Ethics Journal, 12, 225. Shanley, M.L. (2001) Making Babies: Making Families, Boston, Beacon Press. Sheldon, S. and Wilkinson, S. (2004) ‘Should Selecting Saviour Siblings Be Banned?’, Journal of Medical Ethics, 30, 533. Sinclair, R. (2004) ‘Participation In Practice: Making it Meaningful, Effective and Sustainable’, Children and Society 18, 106–118. Singer, P. (1995) Rethinking Life and Death, Oxford, Oxford University Press. Smith, A.B., (2002) ‘Interpreting and Supporting Participation Rights: Contributions from Socio-cultural Theory’, International Journal of Children’s Rights 10, 73–88. Trevarthen, C. (1999) Quoted in L. Purves and D. Selleck, Tuning Into Children, London, BBC. Tyler, A. et al. (1992) ‘Presymptomatic Testing for Huntington’s Disease in Wales 1987–1990’, British Journal of Psychiatry 161, 481–488. Van Bueren, G. (1995) The International Law on the Rights of the Child, The Hague, Martinus Nijhoff. Wertz, D. (2002) ‘Testing Young Children and Adolescents’ in (eds.) J. Burley and J. Harris, A Companion to Genethics, Oxford, Blackwall, 9–113. Wyatt, J. (1998) Matters of Life and Death, Leicester, Inter-Varsity Press.

Listening and Responding? Children’s Participation in Health Care within England ANITA FRANKLIN AND PATRICIA SLOPER Social Policy Research Unit, University of York

Introduction This article examines recent health policy developments in England in relation to children’s rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research literature to explore evidence regarding: children’s participation both within decisions about their own care and concerning the development of health services, their access to mechanisms that allow them a voice, the provision of and need for accessible information, and factors which prevent or facilitate children’s participation. This paper does not explore in detail issues concerning children’s consent or competence to participate, for authoritative accounts on these subjects, see for example, Alderson and Montgomery, 1996; Alderson, 2000; British Medical Association, 2001; Department of Health, 2001a. Figure One: Article 12 and Article 13 of United Nations Convention on the Rights of The Child (1989) Article 12 1. States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child. 2. For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law. Article 13 1. The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.

Michael Freeman (Ed.), Children’s Health and Children’s Rights, 11–29. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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The term children is used to describe children and young people and does not specify an age range thus reﬂecting the variation and ambiguity of age range within much of the literature on children’s participation.

Policy on involving children and young people Children’s rights to expression and to receiving information are underpinned by Articles 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). The UK Government ratiﬁed the UNCRC in 1991, in the intervening years participatory initiatives and consultations have grown across social care, health and education (Willow, 1997, 2002; Department of Health, 1999, 2001b, 2003a; Sinclair and Franklin, 2000; Cavet and Sloper, 2004; Sinclair, 2004). Within England there is widespread acknowledgment that children should be involved in decisions which affect them. This is reﬂected in existing law, government guidance, regulations and policy. The Human Rights Act 1998 (Article 10) requires central and local government to uphold a right to freedom of expression and the Children Act 1989 requires local authorities to ascertain the wishes and feelings of children they look after or are about to look after, and to give these due consideration, subject to practicability, plus the child’s age and understanding. For disabled children, guidance and regulations (Department of Health, 1991) make it clear that, if a child has complex needs, communication difﬁculties or severe learning difﬁculties, arrangements must be made to establish their views, and that a disabled child cannot be assumed to be incapable of sharing in decision-making. Even the structures and culture of central government have to some extent embraced participation with the establishment of young people’s advisory fora, and the publication of a framework of core principles for children and young people’s involvement across all government departments. Alongside this is the requirement for all central government departments to produce associated Action Plans detailing how they are to involve children and young people in the decision-making of their department (Children and Young People’s Unit, 2001). The government want children and young people to have more opportunities to get involved in the design, provision and evaluation of policies and services that affect them or which they use (Children and Young People’s Unit, 2001, p. 2).

In addition, the government has started to address the need for accessible information for young people by making some of its websites and reports of consultation results available in child-friendly formats (See website: http://www. everychildmatters.gov.uk).

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Within health care, service users in general are being given more power in exercising choice and inﬂuencing the nature and quality of the services they receive: this also includes children and young people. For example, new national requirements for patient and public involvement place a duty on service providers to involve children and young people (Department of Health, 1999, 2001b, 2003a, 2003b). The Department of Health documents in its action plan an expectation that children and young people will be ‘routinely’ involved in service development at both central government and local level. Participation should go beyond consultation and ensure that children and young people initiate action and make decisions in partnership with adults, for example, making decisions about their care and treatment or in day to day decisions about their lives (Department of Health, 2002, p. 4).

Within England, the Children’s National Service Framework (NSF) sets standards aimed at raising the quality of the health and social care services that children receive. The Framework has a broad remit and it stresses the need to consult and involve children: the standard for hospital services states that “children, young people and their parents will participate in designing NHS [National Health Service] and social care services that are readily accessible, respectful, empowering, follow best practice in obtaining consent and provide effective response to their needs” (Department of Health, 2003b, p. 9). Since 2002, all English NHS and Primary Care Trusts, have been required to establish a Patient Advice and Liaison Service (PALS). This service seeks to enable patients and the public, including children and young people, to access information and raise issues of concern (Department of Health, 2000; 2001c). Professional organisations have also recognised the importance of involving children and young people. The British Medical Association (2001) states that health professionals should ensure the participation of children and young people in all aspects of decision-making about their healthcare and that health professionals should take all reasonable steps to enhance the ability of children to participate in decision-making. However, despite legislative requirement and a shift in philosophy, the Government’s commitment to children’s participation has been criticised by the UN Committee reviewing the UK Government’s implementation of the UNCRC. Whilst recognising the increased emphasis placed on participation by the Government, the Committee felt there was still more to do, especially in ensuring that participation leads to change. The Committee recommends that the State party, in accordance with Articles 12 and 17, take further steps to promote, facilitate and monitor systematic, meaningful and effective participation of all groups of children . . . The Committee further recommends that procedures be formed to acknowledge publicly the

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views expressed by children and the impact that they have on developing programmes and policies, and reﬂect how they are taken into consideration (Committee for the Rights of the Child, 2002, p. 7, quoted in Sinclair, 2004, p. 110).

The movement towards involving children in their healthcare is based on the growing body of evidence demonstrating children’s competence to be involved in decisions about their health and care, and about the relevance of experience to competence (for example, Alderson, 1993; Eiser, 1993; Rylance, 1996). Children with experience of severe illness or disability, especially, can contribute unique and essential knowledge during decision-making, which must be given serious consideration when helping children and parents decide about consent to treatment (Alderson, 1993; Alderson and Montgomery, 1996). Five years ago, Dixon-Woods et al. (1999) wrote that evidence suggests that partnership with children enjoys only limited success. Children are given little voice in medical consultations and are rarely consulted as partners in the evaluation and planning of health services. So what is the reality ﬁve years on? Does the evidence suggest movement towards more participatory practice and accessible information for children and young people within healthcare?

What is meant by participation? The term “participation” covers a broad continuum of involvement in decisions; it is a multi-layered concept, involving many different processes (see e.g. Kirby et al., 2003a; Sinclair, 2004). Boyden and Ennew (1997) state that there are two interpretations of the term ‘participation’. It can simply mean taking part, being present or consulted. Alternatively, it can denote a transfer of power so that participants’ views inﬂuence decisions. A number of writers have developed typologies to illustrate this. These generally make hierarchical distinctions between levels of participation according to the degree of power that is shared or transferred, usually depicted as steps on a ‘ladder of participation’. Arnstein (1969) ﬁrst developed the ladder of participation in relation to citizen involvement in community development. Hart (1992, 1997) adapted this for children’s participation and a number of variations on this have followed, including Shier (2001) who attempts to create a “pathway to participation”. Shier adapts the ladder to help practitioners to explore the participation process, determine their current position and identify the necessary steps to be taken to increase their level of participation (see also for example, Thoburn et al., 1995; McNeish and Newman, 2002). These typologies have been criticised as they suggest a hierarchy with the objective being to reach the highest level, where children are the main decider (Treseader, 1997; Willow, 1997; Lardner, 2001). However, participation rights do not necessarily confer the right to be

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the main decider, nor do children want to exclude their parents and other adults from the process (Lansdown, 1995; Alderson and Montgomery, 1996; Morrow, 1998). Studies have also shown that children and young people recognise the limits of their autonomy and accept their need for adult guidance and support (Newman, 1996; Morrow, 1998). Recently, Kirby et al. (2003a) have developed a non-hierarchical model of participation, where no one level is assumed to be superior to another; instead the type of participation activity will be determined according to the circumstances and the participating children and young people. Models of participation help to distinguish between different levels of empowerment afforded to children and young people, highlight the need to understand the term participation and prompt examination of what kind of participation is appropriate. It is now generally accepted within England, that the level of children’s participation will vary depending on the decisions involved and the capability and choice of the child. However, meaningful participation must also be seen as a process not simply an isolated activity or event (Kirby et al., 2003a). Alderson and Montgomery (1996) deﬁne four levels at which children can participate; 1. 2. 3. 4.

Being informed Expressing a view Inﬂuencing a decision Being the main decider

Taking Alderson and Montogomery’s example, all levels are important methods of participation and the ﬁrst three precede the fourth if the child is to make an informed choice. The ﬁrst three levels are contained within the UNCRC and include any child who can ﬁrst understand information, secondly, form a view and ﬁnally, is considered to be able to form a view which can usefully inform the decision-making process. This model provides a useful framework to examine the evidence of children’s participation within healthcare in England at this present time.

Provision and need for accessible information Genuine participation is based on informed consent and requires that children and young people are given full and accessible information about the decisions to be made and/or the participation activity. Children cannot participate in decisions if they are not fully informed of the options available to them and the implications of those options, it is the ﬁrst and vital stage of the process. Children in hospital settings, for example, need to be informed about who is responsible for telling them what is happening, what the implications of

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treatment are, side effects, options that are available, implications of not having the treatment, whether it will hurt and how long it will take (Lansdown, 1995). While it is arguable that Article 12 is limited by reference to particular attributes of the child, namely their capacity, age and maturity, Article 13 grants children the right to express, seek and receive information in any medium they wish. This emphasis on provision of appropriate means of communication is of particular signiﬁcance to younger children and disabled children, especially those with communication related impairments. The Department of Health states explicitly that a child who is learning disabled should not be assumed to lack competence: “many children will be competent if information is presented in an appropriate way and they are supported through the decision-making process” (Department of Health, 2001a, p. 4). Parents and health practitioners have a clear duty under Article 12 to ensure that the child has been given both the time and information they need to be helped to make an informed choice. However, evidence on children’s experiences of the process of information sharing is limited, for example, little is known as to whether their information needs are met when they have been involved in decision-making. Bradding and Horstman (1999) found that chronically ill children had information needs within four domains: diagnosis, treatment, prognosis and “supportive”, the need for honest, accurate information given within a supportive environment was evident. Beresford and Sloper’s (1999) research with 63 young people affected by six chronic conditions identiﬁed their views on medical and psychosocial information needs which must be met to promote physical and emotional well being. These included medical information on factors such as the condition, general human biology, treatments, tests and investigations, managing exacerbation, lifestyle factors, current research and health and other sources of statutory support. Psychosocial information needs included dealing with negative emotions, living with physical symptoms, living with unanswered questions, dealing with parents and peers, managing at school and in other social settings, living with restrictions on lifestyle, maintaining a positive attitude and planning for the future. The young people also highlighted the important role of their parents as information providers, indicating that parents’ information needs must also be addressed. Changing needs mean regular information is required, delivered in a variety of ways, appropriate to the needs of the young person. Dixon-Woods et al. (1999) state that there is a scarcity of evidence about how to design information materials for children. However, Alderson and Montgomery (1996) offer practical suggestions on the type of information which should be shared with children involved in decision-making in health care settings, such as information on their condition, purpose of treatment, hoped for beneﬁts, timing and nature of treatment/investigation, risks involved and possible harm and incon-

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venience it will cause (pain, scarring, follow-up clinics etc.). They also suggest how practitioners might check young patients’ understanding of this information. For example, through the questions young patients might ask, their expression of hopes, fears and of what might be in their best interest. Brook (2000) has developed a framework for children to be involved in decisions about proposed liver transplant, although the framework is applicable to many situations. The framework highlights the uniqueness of each child and their family, the necessity of keyworkers to co-ordinate information sharing and the need for an open, friendly approach which shares information and does not give information. Privacy, sensitivity and an allowance of adequate time are deemed essential.

Access to mechanisms to allow children and young people to voice their views The second stage of Alderson and Montgomery’s model describes children expressing a view. However, genuine participation requires that this view is listened to. There is now widespread acknowledgement, particularly within the care-system, that children and young people’s safety relies on their being listened to and involved in decisions, both about their own lives and also in general policy and service development (Utting, 1997; Waterhouse, 2000). Moves have been made to create structures that allow children and young people to voice issues of concern or complain about services or treatment. Both the 1989 Children Act and the 1990 NHS and Community Care Act established a duty on the part of service providers to provide transparent complaints procedures. However, such procedures have been widely criticised for being adult orientated, inaccessible, lacking in conﬁdentiality and difﬁcult to negotiate without the support of an advocate (Utting, 1997; Aiers and Kettle, 1998). Patient Advice and Liaison Services have recently been established within all English NHS and Primary Care Trusts, to provide an easily accessible service for people with concerns about their care. However, research suggests that PALS have, so far, provided a generic service, and many have not provided a service that is accessible to children and young people (Heaton and Sloper, 2004). Nevertheless there are some attempts being made to make mechanisms for complaints accessible to children; for example, MENCAP (2003) has recently developed a resource pack to assist children with a learning disability to complain about the services they use. Some literature points to the necessity of not only formal mechanisms through which children can participate, but also the need for informal approaches – a listening culture, where children can voice their views and be listened to at any time (McNeish and Newman, 2002; Lightfoot and Sloper,

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2003; Kirby et al., 2003a, 2003b). Studies in the main concentrate on formal mechanisms, but Lightfoot and Sloper’s study found that young people urged an informal approach, in addition to formal structures and dedicated ‘participation workers’ (2002, 2003).

Focus of participation activity It is important when examining participation to distinguish the focus of children’s participation which can vary. The third level of Alderson and Montgomery’s model involves young people inﬂuencing decisions and children and young people can inﬂuence decisions in matters which affect them as individuals (personal or individual decisions), and those which relate to them as a group (public decision-making), for example within service planning and development, or inﬂuencing policymaking. Both are important, but the mechanisms to achieve involvement are likely to be different. Evidence of individual participation in health care Published literature within this area of participation has mainly focused on children’s competency to be involved in decisions about their health care and treatment. Most studies have concentrated on children with serious health problems or disabilities, where results have shown that when children acquire knowledge about their condition, treatment, likely pain and prognosis, they are more willing to co-operate with treatment, they understand better when and why to take drugs, they endure painful treatments more patiently and recover better (Alderson, 2000; Tates and Meeuwesen, 2001). Cavet and Sloper (2004) summarised the evidence on programmes or strategies designed to improve the knowledge of children and young people regarding their medical condition and concluded that they tended to show positive results (e.g. Bradbury et al. (1994) regarding hand surgery for children with missing ﬁngers; Booth et al. (1995) about cochlear implants; Brook (2000) concerning children with liver disease; Barlow and Harrison (1996) regarding juvenile arthritis and volunteer contact; Lewis (1991) cited in a review by Lewin et al. (2002) about medical interviews with children and their parents; Bartholomew et al. (1997) regarding children with cystic ﬁbrosis). Alderson (2000) quotes a number of examples of very young children with life-threatening illnesses being consulted and taking a very active role in their treatment. These include two-year old children with cancer understanding the names of their medication, the purpose of them and cooperating with their treatment (Kendrick et al., 1986) and a seven year old child weighing up the risks and beneﬁts of having a heart and lung transplant (Alderson, 1993).

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Evidence however, suggests that the involvement of children is patchy and requires further development. For example, research shows that the conversational contribution of the child in medical encounters is slight (Tates and Meeuwesen, 2001), and Obigwe (2004) quotes evidence from a database complied by The Commission for Health Improvement, which states that children and young people are unhappy with the lack of communication they get when they are treated in the NHS and that they are not sufﬁciently involved within the decision-making process. The database contains the results of 59 separate reports of feedback from children and young people about health care (see http://www.chi.nhs.uk//childrens_voices). There is limited evidence on which children are being involved in participation activity but the evidence available suggests that certain groups are less likely to be involved. Kirby and Bryson (2002), in their review of 27 research studies on participation, noted that older young people were more likely to be involved than younger ones and girls were more likely to be involved than boys. Concerns about the participation of young people from socially excluded groups have been raised by several authors (e.g. McNeish and Newman, 2002; Cutler and Frost, 2001) Younger children, children with communication difﬁculties and those with minimum involvement with local agencies have been identiﬁed as least likely participants (Sinclair, 2004). Cavet and Sloper (2004) summarise studies which suggest that some disabled children are not being afforded their full rights regarding participation, in particular ‘ventilator dependent’ young people (Noyes, 2000), those looked after by the local authority (Morris, 1998a, 1998b) and those with severe impairments (Lightfoot and Sloper, 2003). In addition, the lack of availability of communication aids to those children who rely on them has been reported as presenting obstacles and limiting the children’s involvement in decision-making (Stone, 2001; Morris, 1998a; Rabiee et al., 2001). Marchant and Jones (2003) note the linguistic and cultural barriers to involvement faced by disabled children from ethnic minority groups. The literature to date has in the main concentrated on children’s competency to participate, although there are increasing numbers of studies reporting successful participation of children within their own health care. However, there is no evidence yet to suggest that this is widespread practice, and clearly some children, such as those with disabilities, are generally not being involved. There has been little data collected on the approaches undertaken by practitioners, children’s experiences of involvement, and on the outcomes for children, parents, professionals and services.

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Evidence of participation in public decision-making regarding health care Children have a lot to tell us about their access to and experiences of health services and resources and this area has received more attention, with children increasingly being consulted about a range of issues concerning health services (for example, Elliot et al., 1996; Noyes, 2000; Jones et al., 2000; Gleeson et al., 2002; Liabo et al., 2002; Madge and Franklin, 2003). Young people have been involved in developing a children’s version of the Department of Health Drug Strategy (Department of Health, 2003a) and disabled children have expressed their views about what constitutes quality in services (Mitchell and Sloper 2001). Bradding and Horstman (1999) describe using the draw and write technique to allow young chronically ill children to express their views about hospitals, health professionals and health information needs. However, there is little evidence that collates the disparate reports published on what help and information children and young people want, where they go for help, and what gaps there are in formal and informal provision. Children and young people are ever more being asked for their opinions on services, yet there is a lack of data on how their views are feeding into the subsequent decision-making processes, which could led to disillusionment among young people who see little evidence that their views are being taken seriously (Sinclair, 2004). Cutler and Frost (2001) mapped young people’s involvement in public decision-making and concluded that within health promotion young people’s participation was in evidence. They highlighted government initiatives such as the National Healthy School Standard (NHSS), which aims to help schools become healthier places and places pupil participation high on the agenda. However, Cutler and Frost found little evidence of young people’s participation in health treatment services or indeed, information on good practice within this area. They highlighted one study by Lightfoot and Sloper (2002) which identiﬁed 27 examples of local health services which consulted children who were chronically ill or physically disabled, of which 11 involved young people in subsequent decisions about service development. Clearly, there is a need for more evidence of this kind to illuminate the approaches undertaken, document the experiences of those involved and to learn more about how or if children’s views are inﬂuencing the decisions being made.

Barriers to young people’s participation Although children and young people’s participation is part of international law and on the agenda of the government, there is evidence of a number of barriers that prevent effective participation (see for example, Alderson and

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Montgomery, 1996; Alderson, 2000; Willow, 2002). Lansdown (1995) notes that a commitment to respect the participation rights of children represents a signiﬁcant shift away from traditional understandings of children’s status in society, and provokes concerns about its implications for adult/child relations. Participation raises questions about children’s status, lack of power and the need for widespread changes to how we view children. Some barriers identiﬁed pertain to the complexity and bureaucratic nature of organisations (Matthews, 2001; Kirby and Bryson, 2002, Kirby et al., 2003a, 2003b); to adult attitudes, particularly concerning the capabilities and competence of children, and the need to protect children (Matthews, 2001; Bell et al., 2002; Kirby and Bryson, 2002); to a lack of relevant training and support for adult facilitators and young people participating (Kirby and Bryson, 2002); a lack of research evidence to support participatory activities (DixonWoods et al., 1999; Hennessy, 1999); and practical barriers such as time, resources and dedicated funding (NcNeish and Newman, 2002). It should not be overlooked that young people themselves can form a barrier (McNeish and Newman, 2002). Young people may have ﬁxed ideas about adults, or generally not have positive relationships with them. They may also lack self-esteem and conﬁdence or their personal circumstances may not be conducive, for example if they are carers or lack transport. Of course, children and young people may not want to take part or have other competing priorities on their time.

Factors which facilitate young people’s participation Although a large number of guides and checklists on good practice in involving children in decision making exist (for examples, see Ward, 1997; Treseder, 1997; Beecher, 1998; Cohen and Emmanuel, 1998; Morris, 1998c, 2003; McNeish, 1999; Kirkbride, 1999; Shier, 2001; Clark and Herts, 2000; Sinclair and Franklin, 2000; Children and Young People’s Unit, 2001; Clark and Moss, 2001; Wade and Badham, 2001; Lightfoot and Sloper, 2002; Coombe, 2002; The Children’s Society, 2002; Marchant and Jones, 2003; Cutler, 2003; Kirby et al., 2003a, 2003b), it is not always clear where the evidence for this advice on good practice has come from. In most cases, evidence has been gathered from adult facilitators of participation activity; there is little evidence from children about their experiences of involvement, although some data are emerging (Matthews, 2001; Coombe, 2002; Lightfoot and Sloper, 2002, 2003; Kirby et al., 2003a). However, there are some common themes which can be derived from the literature and identiﬁed as being important to the success of participatory work with children and young people.

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– Clarity and shared understanding Clarity on the purpose, objectives, parameters and possible outcomes of participation is fundamental (Children’s Taskforce, Department of Health, 2001; Sinclair and Franklin, 2000; Kirby and Bryson, 2002). Sinclair (2004) states that only when the purpose of participation is clear can adults be honest with themselves and with children involved. Lack of clarity can also lead to tokenism and misunderstanding about the level of involvement children may have, and make it difﬁcult to evidence change as a result of participation activity. When children are approached to participate they need clear, accessible information about what participation will entail and what participation will hopefully achieve, and arrangements regarding conﬁdentiality, anonymity, and the option to opt out (Alderson, 1995; Sinclair and Franklin, 2000; Lightfoot and Sloper, 2002, 2003). – Staff training and development The need for staff training and skills development in order to promote participation in decision-making by children is highlighted in several studies (Hennessy, 1999; McNeish et al., 2000; Children’s Taskforce, Department of Health, 2001; Kirby and Bryson, 2002; McNeish and Newman, 2002; Lightfoot and Sloper, 2002, 2003; Kilgour, 2002). Attitudinal changes in health professionals are required about childhood and adolescence, particularly concerning consent and competence (Alderson and Montgomery, 1996); about communication (Beresford and Sloper, 1999); and about the idea of partnership between healthcare professionals and their patients (Bristol Royal Inﬁrmary Inquiry, 2001). Beresford and Sloper (1999) highlight the need for skills development with regard to communication, with the suggestion that this will be more effective if young people’s communication skills are also developed. – Using ﬂexible and appropriate methods There are a number of publications that highlight the advantages and disadvantages of numerous methods of involving children and young people and emphasise that ﬂexibility and the use of a wide range of methods and approaches is important (for example, see Cohen and Emmanuel, 1998; Kirby and Bryson, 2002; Lightfoot and Sloper, 2002, 2003). The necessity of tailoring methods to be appropriate for children cannot be underestimated, taking into account factors such as their age, ethnicity, gender, individual circumstances and support needs. Cavet and Sloper (2004) summarize the evidence surrounding inclusive approaches to involving disabled children, though their conclusions may equally apply to other children and young people. They highlighted from the available evidence the following as important:

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– – – – –

using a multi-media approach or variety of methods; availability of resources such as communication aids or interpreters; use of advocates or mentors; multiple contacts in order to get to know the young person; ﬂexibility about how children participate and recognising that children communicate in mediums other than speaking; – independent facilitators so that children can give their views about services they use in conﬁdence; – and the need to make participation fun and rewarding. – Organisational culture, systems and structures It is recognized that the culture, structures and systems of organisations impact on participation activity (Kirby and Bryson, 2002; McNeish and Newman, 2002; Kirby et al., 2003a, 2003b; Cavet and Sloper 2004). A listening culture among staff is essential as well as genuine commitment, so that young people feel respected and conﬁdent to express their views, and have their views listened to and responded to (McNeish et al., 2000; Sinclair and Franklin, 2000; Children and Young People’s Unit, 2001; McNeish and Newman, 2002; Lightfoot and Sloper, 2003). Kirby et al. (2003a), highlight how genuine participation is a process and not an isolated event, and thus requires organisations to change in attitude, procedures and styles of working across all levels, create champions of participation to support change across the whole organisation, and develop a shared vision and understanding of participation. They state that the key to this is senior management support and a mainstreaming of practice. – Assessing and evidencing the impact of children’s participation Badham (2004) argues that it is often unclear how the process of participation is meant to link with better outcomes for the intended beneﬁciaries and what is actually changing for children and young people as a result of their involvement. Despite a growth in participation activity, there is a lack of evaluation in terms of process and outcomes, both internally and externally (Kirby and Bryson, 2002; Cavet and Sloper, 2004; Sinclair, 2004). For many, children’s participation is a value or rights based principle and not something that has to be justiﬁed by evidence. However, as Sinclair (2004) states, this should not diminish the need for monitoring or evaluation as part of a learning culture, so that more can be learnt about making the process meaningful and bringing about sustainable change. Some moves have been made in this direction with the Department of Health (2003a) prioritising this within their action plan and recent work funded by the Children and Young People’s Unit (Kirby et al., 2003a, 2003b). There is also increasing pressure to develop

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national minimum standards of participation and charter marks for organisations undertaking participatory activities (Cutler, 2003).

Concluding comments Within England, the value of involving children and young people is accepted by government and is continuing to be reﬂected in policy. However, it would appear that participation practice is limited and patchy and, particularly within service development, may only be occurring at relatively lower levels of decision-making (CR Team Article 12, 1999; Lightfoot and Sloper, 2003). There is little published evidence, as yet, to suggest that there is successful participation across all levels of Alderson and Montgomery’s model. Change and challenge lies ahead if participation is to become embedded and sustained. Equally of concern is the limited evidence of equality of participation across the whole population of children and young people (Kirby and Bryson, 2002; Sinclair, 2004; Cavet and Sloper, 2004). The exclusion of some groups of young people, particularly disabled children, younger children and those from marginalised groups, from the participation process has been raised by a number of authors (McNeish et al., 2000; NcNeish and Newman 2002; Sinclair and Franklin, 2000; Children and Young People’s Unit, 2001; Lightfoot and Sloper, 2003; Sinclair, 2004). Checklists and guides cannot achieve the long-term inclusion of children and young people in decision-making alone, although they can help to support initiatives and help to launch activity (Willow, 2002). However, sustained change can only come through breaking down the barriers to children’s participation. The challenges which lie ahead include the need to demonstrate the extent of young people’s involvement, the collation of evidence from children and young people about their own experiences of participation, and evidence on how participation can become embedded and sustained. Internal and external evaluations are needed on the process and outcome of participation. DixonWoods et al. (1999) argue that, “the aspirations of the children’s rights movement will have little chance of being realised until there is more research based evidence on outcomes of shared decision-making, how the competence of children can be assessed, how information can be shared with children and how shared decision-making should be managed in practice” (p. 778). Sinclair (2004) states that with participation “the ﬁrst important step was to win the case for children’s participation and to see more and more young people being given the opportunity to inﬂuence decisions. The second was to make that involvement more meaningful for children. The next steps are to ensure that participation is more effective in the impact it has on decisions and on

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decision-making processes and ultimately on participation structures and cultures” (p. 114). This describes the current situation with regard to children being involved in their health care. Reports have documented the rights of children, and offered practical steps for participation and information provision. However, much is left to learn about who is being involved, how they are being involved and the outcomes of their involvement.

References Aires, A. and J. Kettle, When Things Go Wrong: Young People’s Experiences of Getting Access to the Complaints Procedure. (London: NISW, 1998). Alderson, P. Children’s Consent to Surgery. (Buckingham: Open University Press, 1993). ———. Children, Ethics and Social Research. (Barkingside: Barnardo’s, 1995). Alderson, P. and J. Montgomery. Health Care Choices: Making Decisions with Children. (London: Institute for Public Policy Research, 1996). Alderson, P. Young Children’s Rights: Exploring Beliefs, Principles and Practice. (London: Jessica Kingsley Publishers, 2000). Arnstein, S. “Eight Rungs on the Ladder of Citizen Participation”, Journal of American Institute of Planners 1969, (35(4)), 216–224. Badham, B. “Participation – For a Change. Disabled Young People Lead the Way”, Children and Society 2004, (18(2)), 143–154. Barlow, J. and K. Harrison. “Focusing on Empowerment: Facilitating Self-Help in Young People with Arthritis Through a Disability Organisation”, Disability and Society 1996, (11), 539–551. Bartholomew, L., D. Czyzewski, G.S. Parcel, P.R. Swank, M.H. Sockride, M.J. Mariotto, D.V. Schidlow, R.J. Fink, and D.K. Seilheimer. “Self-management Of Cystic Fibrosis: Short-Term Outcomes Of The Cystic Fibrosis Family Education Programme”, Health Education and Behaviour 1997, (24), 652–666. Beecher, W. Having A Say! Disabled Children and Effective Partnership in Decisionmaking. Section II Practice Initiatives and Selected Annotated References. (London: Council for Disabled Children, 1998). Bell, P. and six young people from Investing in Children Projects. Changing the View: How young people’s ideas can revolutionise health services. (York: Youth Work Project, Conference Presentation. Involving Young Patients in the NHS, 20 September 2002). Beresford, B. and P. Sloper. The information needs of chronically ill or physically disabled children and adolescents. (York: Social Policy Research Unit, University of York, 1999). Booth, C.L., C. Sheridan, D. Cafarelli Dees, C. George, and N.P. Haacke. “Involving the older child in the cochlear implant decision-making process”. Annals of Otology, Rhinology and Laryngology 1995, (Supplement 166), 207–208. Boyden, J. and J. Ennew. Children in Focus: A Manual for Participatory Research with Children. (Stockholm: Radda Barnen, 1997). Bradbury, E.T., S.P.J. Kay, C. Tighe, J. Hewison. “Decision-making by parents and children in paediatric hand surgery”. British Journal of Plastic Surgery 1994, (47), 324–330. Bradding, A., and M. Hortsman “Using the write and draw technique with children.” European Journal of Oncology Nursing 1999, (3(3)), 170–175.

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Bristol Royal Inﬁrmary Inquiry. Final Report. (Bristol: 2001). British Medical Association. Consent, Rights and Choices in Health Care for Children and Young People. (London: BMJ Books, 2001). Brook, G. “Children’s Competency to Consent: A Framework for Practice”. Paediatric Nursing 2000, (12(5)), 31–35. Cavet, J. and P. Sloper. “Participation of disabled children in individual decisions about their lives and in public decisions about service development”. Children and Society 2004, (18(4)), 278–290. Children and Young People’s Unit. Learning to Listen: Core Principles for the Involvement of Children and Young People. (London: Department for Education and Skills, 2001). Children’s Taskforce, Department of Health. Principles for Participation of Children, Young People and Families in the Children’s Taskforce. (London: Department of Health, 2001). Clark, P. and B. Herts. Make it Happen! (London: Department of Health, 2000). Clarke, A. and P. Moss. Listening to young children: The Mosaic Approach. (London: National Children’s Bureau, 2001). Cohen, J. and J. Emanuel. Positive Participation: Consulting and Involving Young People in Health-Related Work: A Planning and Training Resource. (London: Health Education Authority, 1998). Coombe, V. Up For It: Getting Young People Involved in Local Government. (London: The National Youth Agency, 2002). CR Team, Article 12. Respect! A Report Into How Well Article 12 of the United Nations Convention On The Rights Of The Child Is Put Into Practice Across The UK. (Nottingham: Article 12, Voluntary Action Centre, 1999). Cutler, D. and R. Frost. Taking the Initiative: promoting young people’s involvement in public decision making in the UK. (London: Carnegie Young People Initiative, 2001). Cutler, D. Standard! Organisational Standards and Young People’s Participation in Public Decision Making. (London: Carnegie Young People’s Initiative, 2003). Department of Health. The Children Act 1989 Guidance and Regulations: Volume 6 Children with Disabilities. (London: Department of Health, 1991). ———. Patient and Public Involvement in the new NHS. (London: Department of Health, 1999). ———. The NHS Plan: A Plan for Investment, A plan for Reform. (London: Department of Health, 2000). ———. Seeking Consent: Working with Children. (London: Department of Health, 2001a). ———. The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. (London: Department of Health, 2001b). ———. Involving Patients and the Public in Healthcare. (London: Department of Health, 2001c). ———. Listening, Hearing and Responding: Core Principles for the Involvement of Children and Young People. (London: Department of Health, 2002). ———. Listening, Hearing and Responding. Department of Health Action Plan 2003/04. (London: Department of Health, 2003a). ———. Getting The Right Start: The National Service Framework for Children – Standard for Hospital Services. (London: Department of Health, 2003b). Dixon-Woods, M., B. Young, and D. Heney. “Partnerships with Children”. British Medical Journal 1999, (319), 778–780. Eiser, C. Growing up with a Chronic Disease. (London: Jessica Kingsley Publishers, 1993).

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Elliot, E., A. Watson and S. Tanner. Time to Put Children First: Children’s and Young People’s Views of Health Care in Salford and Trafford. (Salford: Public Health Research and Resource Centre, University of Salford, 1996). Gleeson, C., M. Robinson and R. Neal. “A Review of Teenagers’ Perceived Needs and Access to Primary Health Care: Implications for Health Services”. Primary Health Care Research and Development 2002, (3), 193–203. Hart, R. Children’s Participation: From Tokenism to Citizenship. (Florence: UNICEF International Child Development Centre, 1992). ———. Children’s Participation: The Theory and Practice of Involving Young Citizens in Community Development and Environmental Care. (New York: UNICEF, 1997). Heaton, J. and P. Sloper. “National Survey of Patient Advice and Liaison Services (PALS) in England: Children, young people and parents’ access to and use of PALS”. Child: Care, Health and Development, 2004 (30(5)), 495–501. Hennessy, E. “Children as Service Evaluators”. Child Psychology and Psychiatry Review 1999 (4, (4)), 153–161. Jones, R., J. Coleman and C. Dennison. Community Health Initiatives for Young People: A Working Paper. (Brighton: Trust for the Study of Adolescence, 2000). Kendrick, C., J. Culling, T. Oakhill and M. Mott. “Children’s Understanding of Their Illness and Treatment Within a Paediatric Oncology Unit”. Association of Clinical Psychologists and Psychiatrists Newsletter 1986, (8), 16–20. Kilgour, K. Circus Skills: A Training, Support and Development Needs Survey of Participation Workers. (London: Carnegie Young People Initiative, 2002) Kirby, P. and S. Bryson. Measuring the Magic? Evaluating And Researching Young People’s Participation In Public Decision-Making. (London: Carnegie Young People Initiative, 2002). Kirby, P., C. Lanyon, K. Cronin and R. Sinclair. Building a Culture of Participation: Involving Children and Young People in Policy, Service Planning, Delivery and Evaluation-Research Report. (London, Department for Education and Skills, 2003a). ———. Building a Culture of Participation: Involving Children and Young People in Policy, Service Planning, Delivery and Evaluation-Handbook. (London: Department for Education and Skills, 2003b). Kirkbride, L. I’ll Go First: The Planning and Review Toolkit for Use With Disabled Children. (London: The Children’s Society, 1999). Lansdown, G. Taking Part: Children’s Participation in Decision Making. (London: Institute for Public Policy Research, 1995). Lardner, C. Exploring Good Practice in Youth Participation: A Critical Review. (Edinburgh: Clarity, 2001). Lewis, C.C., R.H. Pantell and L. Sharp. “Increasing patient knowledge, satisfaction and involvement: Randomized trial of a communication intervention”. Paediatrics, 1991 (88 (2)), 351–358, cited in Lewin S.A., Z.C. Skea, V. Entwhistle, M. Zwarenstein and J. Dick. “Interventions for providers to promote a patient-centred approach in clinical consultations. (Cochrane Review)”, The Cochrane Library 2002 (3: Oxford. (29 August 2002). Liabo, K., K. Curtis, N. Jenkins, H. Roberts, S. Jaguz and D. McNeish. Healthy Futures: A Consultation with Children and Young People in Camden and Islington About Their Health Services. (London: North Central London Strategic Health Authority, 2002). Lightfoot, J. and P. Sloper. Having a Say in Health: Guidelines for Involving Young Patients In Health Services Development. (York: Social Policy Research Unit, University of York, 2002). .

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———. “Having a Say in Health: Involving Children and Young People with a Chronic or Physical Disability In Local Health Services Development”. Children and Society 2003, (17), 277–290. Madge, N. and A. Franklin. Change, Challenge and School Nursing. (London: National Children’s Bureau, 2003). Marchant, R. and M. Jones. Getting it Right: Involving Disabled Children in Assessment, Planning and Review Processes. (Hove: Triangle, 2003). Matthews, H. Citizenship, Youth Councils and Young People’s Participation. Journal of Youth Studies 2001, (4, (3)), 299–318. McNeish, D. Promoting Participation for Children and Young People: Some Key Questions for Health and Social Welfare Organisations. Journal of Social Work Practice 1999, (13(2)), 191–203. McNeish, D., A. Downie, T. Newman, A. Webster, and J. Brading. Report for Lambeth, Southwark and Lewisham Health Action Zone. The Participation of Children and Young People. (Barkingside: Barnardo’s, 2000). McNeish, D. and T. Newman. “Involving Children and Young People in Decision-Making”, in D. McNeish, T. Newman and H. Roberts (eds.), What works for Children? (Buckingham: Open University Press, 2002). MENCAP. Listen Up: Helping Children with a Learning Disability Complain about the Services They Use. (London: MENCAP, 2003). Mitchell, W. and P. Sloper. “Quality in services for disabled children and their families: what can theory, policy and research on children’s and parent’s views tell us?” Children and Society 2001, (15), 237–252. Morris, J. Still Missing? Volume 1, The Experiences of Disabled Children and Young People Living Away from their Families. (London: The Who Cares Trust, 1998a). ———. Still Missing? Volume 2, Disabled Children and the Children Act. (London: The Who Cares Trust, 1998b). ———. Don’t Leave Us Out: Involving disabled children and young people with communication impairments. (York: Joseph Rowntree Foundation, 1998c). ———. “Including All Children: Finding Out About the Experiences of Children with Communication and/or Cognitive Impairments”. Children and Society 2003, (17(5)), 337–348. Morrow, V. Understanding Families: Children’s Perspectives. (London: National Children’s Bureau/Joseph Rowntree Foundation, 1998). Newman, T. “Rites, Rights and Responsibilities”, in H. Roberts and D. Sachdev (eds.) Young People’s Social Attitudes. (Barkingside: Barnardos, 1996). Noyes, J. “Enabling Young ‘Ventilator-Dependent’ People to Express Their Views and Experiences of Their Care in Hospital”. Journal of Advanced Nursing 2000, (31(5)), 1206–1215. Obigwe, C. “Children Say They Are Not Involved Enough In Their Treatment”. British Medical Journal 2004, (March 13: 328 (7440)), 600. Rabiee, P., M. Priestley and J. Knowles. Whatever Next? Young Disabled People Leaving Care. (York: York Publishing Services, 2001). Rylance, G. “Making Decisions with Children”. British Medical Journal 1996, (312:) 794 (30 March). Shier, H. “Pathways to Participation: Openings, Opportunities and Obligations”. Children and Society 2001, (15), 107–117. Sinclair, R. and A. Franklin. Young People’s Participation: Quality Protects Research Brieﬁng, No. 3. (London: Department of Health, 2000).

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Sinclair, R. “Participation in Practice: Making it Meaningful, Effective and Sustainable”. Children and Society 2004, (18(2)), 106–118. Stone, E. Consulting with Disabled Children and Young People. (York: Joseph Rowntree Foundation, 2001). Tates, K. and L. Meeuwesen. “Doctor-Parent-Child Communication. A (Re) View of the Literature”. Social Science and Medicine 2001, (52(6)), 839–851. The Children’s Society. Young People’s Charter of Participation. (London: Children’s Society, 2002). Thoburn, J., A. Lewis and D. Shemmings. Paternalism or Partnership? Family Involvement in the Child Protection Process. (London: HMSO, 1995). Treseder, P. Empowering Children and Young People: Training Manual. (London, Children’s Rights Ofﬁce/Save the Children, 1997). United Nations. Convention on the Rights of the Child. (Geneva: United Nations, 1989). Utting, W. People Like Us: The Report of the Review Safeguards for Children Living Away from Home. (London: HMSO/Department of Health/Welsh Ofﬁce, 1997). Wade, H. and B. Badham. Hear by Right: Standards for the Active Involvement of Children and Young People. (Leicester: National Youth Agency and Local Government Association, 2001). Ward, L. Seen and Heard: Involving Disabled Children and Young People in Research and Development Projects. (York: Joseph Rowntree Foundation, 1997). Waterhouse, R. Lost in Care: Report of the Tribunal of Inquiry into the Abuse of Children in Care in the Former County Council Ares of Gwynedd and Clwyd since 1974. (London: HMSO, 2000). Willow, C. Hear! Hear! Promoting Children and Young People’s Democratic Participation in Local Government. (London: Local Government Information Unit, 1997). ———. Participation in Practice: Children and Young People as Partners in Change. (London, The Children Society, 2002).

The Participation Rights of Premature Babies PRISCILLA ALDERSON Professor of Childhood Studies, Social Science Reseach Unit, Institute of Education, University of London

JOANNA HAWTHORNE Senior Research Associate, Centre for Family Reseach, University of Cambridge

MARGARET KILLEN Research Ofﬁcer, Social Science Research Unit, Institute of Education, University of London

Introduction Is it appropriate or useful to phrase premature babies’ needs, welfare, or best interests in the language of babies’ rights? Can babies be rights-holders? This paper reviews the relevance of the UN 1989 Convention on the Rights of the Child (UNCRC), and particularly the so-called participation rights, to premature babies and their care. The review is illustrated with examples drawn from a study of four neonatal intensive care units, NICU. The ﬁrst part of this paper presents the background on human and children’s rights, on research about childhood, babies and participation, and on the neonatal research study. Examples from the study illustrate how participation rights relate to premature babies. The paper concludes that respect for babies’ participation rights is feasible, immediate, integral and indispensable to adequate neonatal care, and that babies’ rights justify and validate high standards of care. Rights Rights are justiﬁed on two main grounds. First, they may be seen as universal, inalienable to all members of the human family (the UNCRC is ratiﬁed by all governments except in the USA and Somalia) and legal entitlements that defend and respect every citizen. Citizenship from birth entitles the child to a legal identity, and the right to expect certain services, protections and amenities from the state. Babies can easily be included in these concepts of rights. Secondly and alternatively, citizenship with its civil rights may be justiﬁed as a status that is gradually learned or earned or developed towards, and is granted Michael Freeman (Ed.), Children’s Health and Children’s Rights, 31–50. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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by age, sex, or merit. Traditionally, English law has restricted children’s rights and regarded children up to 21 and more recently 18 years as legal “infants”, literally “not speaking”. Current English policy on citizenship education (QCA, 1998) slips uncertainly between education for future adult citizenship or the education of children who are citizens now. Traditional links between a set age of majority linked with citizens’ participation or civil rights and the key right to a voice and to freedom of self-expression were replaced during the 1980s by competence or maturity. English case law now respects the decisions of children who have the understanding and discretion to make informed and wise decisions in their own best interests Gillick [1985]. The UNCRC accords to children who are able to form and express their own views, “the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child” (UNCRC, 1989:12).1 Neither article 12 nor Gillick states a minimum age, and these standards lean towards Holt’s view (1976) that children should be able to exercise their rights when they become able and willing to do so. Does the ability-competence criterion open all children’s rights from the above second concept of age-based rights towards the ﬁrst universal concept that embraces all members of the human family? And are even premature babies able to form and express their own views? In Britain, the foetus is legally not “a person” (Montgomery, 1997:401) and has no rights throughout the 40 or more weeks of pregnancy, except for one right after 24 weeks:2 protection from termination of pregnancy. This right to life, however, is qualiﬁed in three ways. First, termination is allowed up to term if “serious handicap” is detected (1990 HFE Act). Secondly, in 2002 for example, although 2,753 abortions between the 20th and the 24th week were recorded, gestational ages may be under-estimated in records to allow abortions after 24 weeks (Times 8.9.03). Thirdly, practitioners are advised to respect women’s refusal of interventions during pregnancy and labour, including interventions intended to save the life of the foetus (RCOG, 1994). In marked contrast, from birth children are entitled to legal personhood, partly denoted by the complex and comprehensive UNCRC rights. The UNCRC preamble recognises the importance of special care within the family for the immature child in “an atmosphere of happiness and love and understanding” although these cannot be rights because they cannot be willed or enforced. UNCRC rights are qualiﬁed in that “the best interests of the child shall be a primary consideration” (3), taking account of the rights and duties of parents or other responsible persons “to provide, in a manner consistent with the evolving capacities of the child, appropriate direction and guidance in the exercise by the child of the [UNCRC] rights” (5). Premature babies can easily be seen as beneﬁting from their UNCRC provision rights to services, to health care, education (of their parents and carers),

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welfare and amenities (Alderson, in press). Babies clearly beneﬁt from their UNCRC rights to protection from abuse, neglect, violence and discrimination (Alderson, forthcoming). These rights can equally well be considered under the traditional rubric of the need, welfare or best interests of the child. The UNCRC participation rights are different, in being moderate versions of adults’ autonomy and civil rights, and some of these are often considered to begin to be relevant to young people aged from 10, 12 or 14 years. Participation rights include qualiﬁed freedoms of expression, information, thought, conscience and religion, association and peaceful assembly, set out in articles 13–15, which are subject to the “national law, public safety, order, health or morals or the protection of the rights and freedoms of others”. A further constraint is that although English law in Gillick respects the decisions of competent children, the UNCRC leaves the ﬁnal decision making to adults and asks adults only to give “due weight” to the child’s views according to age and maturity (12). Some participation rights relate more obviously to babies: the right to life, to a name, an identity, a nationality, children’s rights to have contact with parents and family, to respect for their worth and inherent human dignity as valued members of society, and to respect for their cultural background. All the UNCRC rights can relate to young children (Alderson, 2000), and this paper will consider how the participation rights also relate to premature babies who survive birth from as early as 22 weeks gestation. The next section reviews insights from research about children’s and babies’ competencies and abilities to participate in their care and relationships. New understandings of childhood and babyhood Traditionally, children have been viewed as pre-social beings, who are developing and being socialised by adults towards the endpoint of mature adulthood (Mayall, 2002:4–5). The positive concept of development, of gradually becoming more informed, skilled, rational and reliable, has an inevitable negative converse side: deﬁcit models of younger children as ignorant, incompetent, pre-rational and volatile. However, researchers have increasingly questioned this deﬁcit model, and have examined how childhood is socially constructed, deﬁned and practised in different societies. They have asked: how and why adults construct children as non-competent (as women used to be constructed); how young children’s essential vulnerable dependence may be increased by ascribed and taught incompetence and helplessness; how adults’ interests and authority are served by keeping children in an often imposed and prolonged dependence, which countless children around the world and in the past have shown is neither inevitable nor essential (John, 2003). Just as concepts of gender inequalities have been key to understanding womanhood and women’s social status, so “the concept of generation is key to understanding childhood”

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(Mayall, 2002:120; Alanen, 2001), to see how childhood is socially constructed through numerous changing beliefs, behaviours and adult-child relationships (James and Prout, 1997). Detailed observations show how young children can be highly competent – technically, cognitively, socially and morally (Dunn, 1987; Gardner, 1993; Hutchby and Moran Ellis, 1998; Alderson, 2000). More than being actors, young children can be agents: people who negotiate with others, and alter relationships or decisions or the working of social assumptions or constraints (Mayall, 2002:21). Researchers therefore have questioned the assumed gradual ascent from zero at birth up to adulthood. Since the 1960s, psychologists have recognised newborn babies as “agents creating their own environments in interactions with their caretakers” (Bell, 1968 cited in Wolke, 1995:117). Babies contribute to the parent-infant dyad and to their own development. They seek comforting stimuli, and avoid and shut out unwanted stimuli by habituation (getting used to and coming to ignore repeated stimuli) and by going to sleep. They have a range of self-soothing behaviours, and they “speak” in an expressive language of sounds, facial expressions and body movements that can be “read’. Babies vary greatly in how far they have a robust capacity to learn to handle multiple stimuli, to organise themselves, to interact with the complex environment, and to control their states so that they can avoid becoming overwhelmed and disorganised. Babies also vary in how cuddly they are by nestling or moulding themselves against the carer’s body, and in how readily they take part in social interactions, turning to sounds, tracking, gazing, smiling and becoming excited or irritable, as well as how soon they become exhausted, which they signal by becoming pale or mottled, with altered breathing, hiccoughs, yawns and regurgitating or gagging and crying (Brazelton, 1961; Brazelton and Nugent, 1995; Murray and Andrews, 2000). Researchers’ deeper awareness of newborn babies “marvellous” and “amazing” capacities has followed two key insights, which treat assessment as a means of participating in social interaction. First, observers must always take account of the baby’s state or level of awareness, from deeply or lightly asleep, to drowsy or alert, to becoming upset or crying intensely (Brazelton, 1961). Second, observers must be self-aware and receptive, moving beyond a distanced objective view that treats the baby as an object, towards experiencing a dynamic personal emotional interaction with the baby, sensitively following each baby’s cues to help them to give a “best performance”. “New born infants are social beings who quickly learn to judge the safeness of a situation from the examiner’s facial expression and voice, as well as from the way they are handled” (Brazelton and Nugent, 1995:2, 11). The NBAS – Neonatal Behavioural Assessment Scale – systematically documents term babies’ responses to aversive and non-aversive stimuli, and scores behaviours taking careful note of the baby’s states. Babies’ behaviour is recognised not as wholly biological, driven

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by instincts and genetically programmed development, but also as social, learned and responsive (Vygotsky, 1962; Bruner, 1990; Fifer and Moon, 1994; Siegal, 1997). “Nurture” shapes “nature”, when individual’s experiences alter the structure of the brain, before and after birth (Shatz, 1992; Greenﬁeld, 2000). Research interest has grown in how babies “participate”, “take part” and are “partners” in their learning and social relationships. These participatory approaches have been applied to preterm babies “as socially competent and active partner[s]” with their caregivers, “seeking and eliciting” interactions “to assure self-actualization”, and actively shaping their own development; “self-actualization is participation with the world and interaction with another . . . with a maximum of joint validation” (Als, 1999:31,33, 35). NIDCAP – Newborn Individualized Developmental Care and Assessment Programme – involves naturalistic observations of even the smallest most fragile preterm babies from the ﬁrst week after birth to record the baby’s strengths and sensitivities (not deﬁcits) and to identify goals and recommendations for care (Als, 1981). Babies’ behaviour or language is understood in three subsystems: autonomic (breathing, heart rate, skin colour, hiccoughing, regurgitating); motor (body tone, posture, facial and body movements); and state (patterns of transferring between the states described earlier) (Als, 1981, 1999). NIDCAP sessions last at least 60–90 minutes and observe the environment and the baby’s behaviours and interactions with carers, in order to educate and support the caregivers and to plan care that will enhance the baby’s wellbeing and competence. As this brief review indicates, decades of evidence-based recommendations have been derived from forms of participative research that meticulously observe and listen to babies and try to perceive their views and learn their language. Whereas the foetus ﬂoats in warm ﬂuid, gently bumping against the sides of the uterus, sensing muted sound and diurnal light, and not needing to feed, or digest, or breathe, or cope with gravity and temperature changes, premature babies have to learn to manage without all these protections before they are ready to do so. Premature babies also have to cope with high levels of light, noise, and painful procedures in some NICU, where lighting levels may sometimes be 40 times brighter than the recommended level for adults’ ofﬁce lighting (Glass, 1988), and the noise may be 120 decibels, well above the maximum 50 decibels recommended for ofﬁces (Graven et al., 1992). Compared with babies at home, babies in NICU have much less cuddling, comforting, and care from a few adults who can give sensitive individualised responses to the baby’s cues described above. At times during the ﬁrst forty weeks, the human brain grows by 250,000 neurones per minute (Purves, 1994), and there is particular concern for how the immensely rapidly growing premature baby’s brain can best be protected and nurtured, by adapting “neonatal caring routines to the autonomy of the infant” (Lagercrantz, 2003). There have been long

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debates on whether premature babies should be treated more like a foetus or like a term baby, and whether they are over-stimulated by direct sensations in the NICU that would be muted in utero, or else are under-stimulated by missing the gentle sounds, colours, lighting, tastes, touch-sensations and free movements that the foetus enjoys. Wolke (1989) concludes that babies are both over-stimulated when bombarded with adverse stimuli and also miss comforting contingent stimuli responsive to their own cues and needs. There are many practical recommended ways to increase premature babies’ participation in their health care, development and relationships. For example, from 24 weeks, babies tighten their lids and from 30 weeks they close their eyelids in response to bright lights. Subdued lighting helps babies from around 32 weeks to interact with carers when they ﬁx, track and gaze. The baby’s gaze promotes parents’ affection, “launching both partners on their path of complex affective and cognitive interchange, fuelling mutual competence” (Als, 1999:31). Babies have fewer disruptions to their breathing and heart rate and fewer startle reactions when noise is managed with appropriate acoustic design and the staff work quietly (Mann et al., 1986; Philbin et al., 1999). If premature babies lie supine with their limbs outspread, it is harder for them to do their main tasks: to breathe, to conserve energy, to sleep, and therefore to be able to feed and grow. They struggle against gravity to gather themselves together into the foetal position, limbs together, hands near face so that they can settle themselves, bringing their hands to their face or sucking their ﬁngers. Some neonatal staff take care to help babies to ﬁnd and stay in their preferred position, by tucking them into soft fabric nests or rolls (Als, 1999; Boxwell, 2000:30–34). From 32–34 weeks, babies can coordinate their breathing, sucking and swallowing while learning to feed (Goldson, 1999). Care that is consistently responsive to the individual baby’s cues helps to prevent babies from becoming stressed, disorganised and unstable, while promoting rewarding interactions between babies and carers (Gottfried, 1985). Care needs to be synchronised with each baby’s signs of strength and sensitivity, seen in behaviours that are characteristically either approaching and exploring or avoiding and withdrawing (Als, 1999:33). Skin-to-skin holding (“kangaroo mother care”) beneﬁts the baby and parent, stimulates breastfeeding, and promotes health and earlier discharge, its advantages have been demonstrated by research, and it has been predicted to “become the standard of care throughout the world within 10 years” (Anderson, 1999:152). NBAS and NIDCAP promote appropriate care for babies individually, and also generally when they are used to evaluate NICU standards, and to plan new structures and systems. Yet despite randomised research evidence of the advantages of what might be termed “baby-led” policies, many NICU still disregard this evidence or say that it is too weak. Whether neonatal staff spend time interacting with the babies appears to depend rather arbitrarily on how important the

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staff consider this to be, regardless of stafﬁng levels, and also on how much individual babies initiate vocal and visual interactions (Linn et al., 1985). Goldson (1999:3–4) notes that although all members of the highly trained neonatal team are committed to each child’s survival and optimal development, “yet they function and perform their work in environments that may not be conducive to their own well being or to the well-being of the infants they are committed to caring for.” White (1992) asks why “noxious” NICU continue to be built. Goldson (1999:13–14) deplores the lack of research-based practice in many units, and speculates on whether this neglect is related to systems-based rather than individual-based models of care, that set the convenience and working needs of the staff before the needs of the family, besides cost and space constraints. The following sections review and illustrate speciﬁc participation rights, after explaining the research from which the examples are drawn. The neonatal research An ethnographic study, 2002–2004, observed four NICU in southern England (Alderson et al., 2004). Semi-structured tape-recorded interviews were held with 40 senior neonatal staff and, in the units and in their homes, with a purposive sample of the parents of 80 babies at risk of neuro-developmental problems. The research investigated: how relatively new neonatal treatments, techniques, knowledge and ethical guidance complicate or illuminate longstanding neonatal dilemmas; how clinicians select, evaluate and manage the many neurologically related issues, when making diagnoses, prognoses and treatment plans, and when discussing these with parents and colleagues; how parents and babies experience and respond to the NICU; the strengths and gaps in current knowledge and practice; and how multidisciplinary insights can inform care that is in babies’ present and future best interests. The transcripts and observation notes were analysed for replies to the research questions and for themes raised by participants (Strauss and Corbin, 1998). The data were analysed qualitatively, not in order to test a hypothesis or to measure incidence, but to analyse and try to explain current policies and practice. This paper analyses the data in the light of child rights perspectives.

Participation rights The right to life (6) The ﬁrst participation right, from which all others follow, is that “every child has the inherent right to life [and] to the maximum extent possible survival and development” (6). The rights to life and to protection from torture (37) are

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commonly counted among the few absolute rights. Sadly, for premature babies neither right is absolute, partly because they can conﬂict. Several neonatal staff referred during their interviews to painful but life-sustaining treatment sometimes as “torture”. The right to life as survival can also potentially conﬂict with the quality-of-life rights: the right to the maximum extent possible of development (6), to the highest attainable standard of health (24), and to an adequate standard of living (27). Andrew was born at 22 weeks, and his parents were asked to decide if his treatment should continue. “We said we found the decision a very difﬁcult one to make, because if he did survive we might be imposing a lifetime of suffering on him” (research number 1.20). So if a baby seemed to be very unlikely to survive, or to gain from painful treatment, or to have a future without severe suffering and serious impairment (in re B [1981] 1WLR 1421), the adults began to discuss whether treatment should legally be withheld or withdrawn, and the baby be allowed to die, as debated in an extensive literature (RCPCH, 1997; BMA, 2001; McHafﬁe, 2001). The usual policy at birth in Britain, if the baby appears to have some hope of survival, is to provide any necessary life-sustaining treatment in order to allow time to conduct tests and enable senior practitioners and parents to share in making informed decisions. NICU vary in the age of viability that they will accept; fewer units admit babies aged less than 24 or 23 weeks. Practitioners refer to a window of time while the baby depends on mechanical life support and it is still possible to decide to withdraw treatment. If the baby survives long enough to breathe independently, a decision to end life alters from “allowing the baby to die” by withdrawing mechanical ventilation into, more controversially, withdrawing ﬂuids and nutrition. Medical ethics is inﬂuenced by high expectations of the threshold for a “reasonable” quality of life free from impairment and for an intellectual form of personhood, and low expectations of babies’ capacities and awareness. Harris (1985) asserts that no babies can value their own life and therefore their life has no value. Singer (1995) and others regard babies as non-persons (and therefore non-human-rights holders), lacking ﬁve “ethically relevant characteristics”: consciousness; the capacity to interact with others; having conscious preferences for continued life; having enjoyable experiences; and having relatives who will grieve at their death. In response, Wyatt (1998:167–8) describes the many parents he has known who relate to their premature baby as a unique, precious member of the human community, an individual, with a history, an identity and a name, not a thing but a person to be treated with gentleness and respect, irreplaceable, a beloved child. There are four criteria and kinds of evidence for considering whether babies are persons with human rights to life. Firstly legal, all babies from birth are recognised as persons with rights (HRA, 1998; UNCRC, 1989). Secondly societal, although society gains economically from treating impaired and unwanted

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babies as expendable, it is debated whether these cost-effective values increase human happiness and wellbeing, though that is a topic beyond this paper. Third is the value of premature and impaired babies to their parents and other carers, and our interviews and observations conﬁrmed the overwhelming view in the empirical literature that these babies are very highly valued, loved, and grieved for; if withholding treatment is reluctantly considered, the primary concern is the best interests of the baby. Fourth are the rarely reported babies’ own experiences and responses, and adults’ perceptions of these, reviewed in this paper. The right to life is often discussed as if this is something that adults allow or support, and babies receive. However, many premature babies put much energy and concentration into surviving as if, consciously or not, they value their life. When William (all the babies’ names have been changed), born at 30 weeks, was aged 9 months, his mother was interviewed while she bottle-fed him. He still had a look of intense anxious concentration as he managed his breathing and struggled to suck and to cope, it seemed, with a bloated feeling after each short feed. Like some other babies, from soon after birth William gazed at his mother’s face, as if he depended on her loving support. The pleasure or reassurance that some babies evinced when held by their parents or by nurses they knew well showed that, to some degree, they had all ﬁve of Singer’s above “ethical” characteristics. Interviewer: And was there anything in him do you think that helped to get you all through [the time in NICU]? William’s mother: I think they’re amazing . . . babies, generally . . . a lot of the conversations between the [other] mothers come back to this, that they look very frail but they’re not – determined little – the will to live, I mean it’s obviously not as conscious as that in a baby, but the life thing is so strong, they’ll ﬁght and ﬁght and ﬁght and you start respecting them for that, you know, he’s been much iller than I’ve ever been – never had me in intensive care, but they kind of keep going and you end up feeling really quite in awe of that (research number 3:15) [– means pause, . . . means words omitted].

Many parents and practitioners described similar admiration, and gave examples of babies continuing to survive against all expectations, or sometimes unexpectedly “giving up” as if, in some ways, the babies had the ﬁnal say in whether they lived or died. The right of a child to a name and nationality (7) and to preserve his or her identity (8) The baby’s ﬁrst name is a crucial way to enable everyone in the NICU to identify and relate to the baby as a unique person. The family name denotes the baby’s family membership, history and, often, ethnicity. Some ﬁrst names are signiﬁcant as the names of loved relatives, or they describe the baby. “Yemi’s” elder sister had lived for only one day, and he was born at 24 weeks with a

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20 per cent chance of survival, after a delayed journey in an ambulance that got lost. He stayed in the NICU for 6 months. His mother said: “His real name means ‘remembered by God’. I thought how appropriate because he could have been born on the steps of the ﬂat, so I always think God was watching over him” (2.20). Babies participate by sustaining and rejuvenating and assuring the future of their society and nation. Having a name and a nationality enables the child to be registered, and therefore to be entitled to the UNCRC rights because these entail recognition by “state parties”. Babies are then entitled to state services such as free neonatal care in Britain. “Identity” refers to personal characteristics and agency. Adults frequently described babies’ distinctive responses and contrasted these with the characteristics of other babies or siblings. James was born at 31 weeks and was on cpap, a breathing aid. Some babies pulled on their tubes and the medical notes often recorded “self-extubated”. James’s mother described how he guided her caring: He doesn’t like cpap he pulls it out sometimes, he has pulled all his tubes out and then he is really happy when everything is out and he can be his own person. Yes I see him as a person, sitting and watching him for hours, learning about what he likes. He likes lying on his left side on his tummy, not on his right side. And he’s also like his father, he dislikes anyone playing with his feet, even if he’s sedated if you touch his foot he’ll squiggle but he likes his head and chin and forehead and his back being stroked. If he’s on his right side he gets grumpier. You can learn more and more about your own baby . . . Stroking him does sometimes help, and talking to him, that sometimes stops him crying, but I have to be careful not to get him too excited because then his respiration rate goes up . . . You’re projecting things from yourself and when he is awake and in a bad mood I see a lot of ﬁghting spirit . . . If I talk to him such as while he is having blood taken, he calms down (3.4).

One doctor described seemingly lasting identity or characteristics when as children grew older they continued to be the “good” girl or the “extremely feisty” boy, and added: “There seem to be some very tenacious very strong characters . . . and they seem to be babies who do clinically very well” (1.24). Another aspect of “identity” is personhood, and we picked two qualities, memories and emotions, to see if parents and practitioners believed that babies were beginning to be “persons” of the kind that philosophers might recognise. Several practitioners denied this possibility, or said, “I hope not”, as if neonatal care would be less painful for babies without memories or emotions. Research by Brazelton, Als and others records speciﬁc emotional capacities. During our observations and interviews we saw, or heard adults describe, babies who appeared to express hurt, misery, calm, contentment, relief, pleasure and excitement. One counsellor’s views were shared by several neonatal colleagues:

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Yes I deﬁnitely think they have emotions and memories. I think they deﬁnitely know the difference between the touch of a parent and the touch of a nurse or a doctor, and . . . that if a parent touches them that’s going to be a loving touch and caring touch. The businesslike touch of a doctor is going to be very different. One can almost see the child cringe or tense . . . You see the difference in the reaction when the parent arrives there is an excitement it’s incredible but it may sound mad but I do think having been looking at the babies for so many years when their parent arrives the number of times I’ve said to the parents, “They know you are here, they are excited to see you they are pleased.” You can actually tell these things from a 23 weeker, which is amazing. And of course they have a memory, I think they understand whether they are going to have an [intervention]. I think the memory . . . is unthinkable but it’s knowable (1.25).

To recognise babies as sensitive persons with these kinds of memories and emotions raises vital questions about how neonatal care can respect babies’ rights to “preserve” their identity. The right to contact with family and parents (5, 7, 8, 9, 10, 11, 18, 20, 22, 24, 27) A child shall not be separated from his or her parents against their will, except when [this] is necessary for the best interests of the child (9) The UNCRC, far from being a vision of selﬁsh competing rights, repeatedly emphasises participation: solidarity, equality, communities of peace and justice, and rights that are respected through relationships, beginning with the family. The UNCRC respects “the responsibilities, rights and duties of parents” (5). Besides having “contact” with their family, babies actively contribute: they create and perpetuate families by enabling their parents to realise the right to “found a family” (HRA 1998). The attachment between children and parents, central to family life, appears to be especially nurtured by close physical contact between parents and the active social baby during the early weeks and months (Odent, 1999; Murray and Andrews, 2000; Matthiesen et al., 2001). Parents believed that their babies knew them early on. Joe’s mother: I really think Joe worked out who I was very early on . . . there’d be people around him doing things . . . and then I’d walk in the room and start talking and it was obvious that he looked towards my voice . . . and change and get a bit excited, get a bit jumpy . . . (1.12). Chima’s mother: Even when he is sleeping and I come in, he opens his eyes and looks around. I think he knows my smell or something (3.3).

For babies, “contact” means close emotional and physical ties. The staff varied in how soon and how enthusiastically they encouraged parents to touch and hold premature babies, and helped parents if they were afraid of harming their baby. Some nurses believed that skin-to-skin cuddling made babies too cold and stressed, in reverse of the research evidence. Although parents tended to accept their own unit’s policies, not knowing of possible alternatives, some

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were disappointed to have missed earlier opportunities, and others had to ask the staff to allow such contact. This could be hard when parents felt the staff might disapprove, or would criticise, or possibly blame parents if problems arose from their initiative. Adults might be more conﬁdent if they regarded this contact as the baby’s right. Although soft cotton clothes and covers “facilitate restfulness and comfort” (Als, 1999:55), in some NICU, the babies are nursed nude and stay in incubators to keep them warm. In other units, they wear clothes and hats, and are moved out of incubators as soon as possible, promoting closer contact between babies and caregivers. James’s mother described the link many parents made between contact as touch, relationship, and communication. It would be impossible for me to wait four weeks before touching him as some parents say they do. How could you build a relationship with your child? When you take him out and cuddle him, the mother or the father, you are fully involved, he calms right down (3.4).

Over time, baby-parent contact alters some parents’ views and experiences of the family. Henry’s mother described how she grieved and mentally had a “tough hard time” because he had Down’s syndrome, but how also they had a “wonderful” ﬁrst year together: “he is a real blessing to me”. She would not wish to change Henry because “if he didn’t have Down’s syndrome he wouldn’t be the same person” (3.1). She spoke of her son’s practical and emotional agency. He had transformed her life, for example, she did not return to her career as she had planned. And when asked what was the best and most helpful part of the neonatal unit, Henry’s mother recalled the nurse who said to her, “These children they choose their parents, and this child has chosen you.” Rather like the counsellor’s view earlier, that babies’ memory is “unthinkable but knowable”, Henry’s mother believed that from the start “he probably felt loved, some very prime, primordial, what’s the word, deep way, they pick these things up, babies, they are very aware.” During the most private period, after birth, families have to cope with being in the noisy public NICU, and they need ways that help them to relax, to overcome separating barriers, and sustain intimate contact: curtained alcoves, reclining chairs, rooms for parents to stay and to eat, recognition of fathers’ responsibilities (UNCRC: 18; Killen et al., forthcoming) help with transport, cots for twins and triplets to share as soon as possible. NICUs’ provision of these facilities varied widely. The access and support can be seen as practical respect for babies’ rights to tactile family contact that promotes babies’ restful sleep and stable breathing, and parents’ calm fulﬁlment (Als, 1999:55).

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Freedom of association and peaceful assembly (15) Respect for the child’s cultural background, and inherent human dignity (30, 31, 37, 39) NICUs restrict general visitors’ access in order to preserve quiet and privacy, and some units limit parents’ access. After the babies go home many parents avoid groups and family gatherings for fear of infection. Parents often found it hard to talk to relatives who did not understand their intense anxiety, and they appreciated sharing support with other parents in the unit, although some units discouraged this when, for example, parents were told not to look at or ask or talk about other babies, no parent support group was arranged, and mothers spoke of meeting to talk only outside the unit. So while they would most appreciate support from their extended family and welcoming ceremonies to afﬁrm the child’s cultural background and dignity as a valued new member of the family, parents could feel isolated, as Iwu’s Nigerian mother described. I go to see my baby and the nurses say, “Oh no you can’t see your baby, it is not allowed, you know.” Yes. If you ask anything about the next baby they say, “Don’t ask, we don’t have permission to talk about that, everything is conﬁdential you know . . .” And you cannot go in to see the baby unless you are with the baby’s parents, and so I have to take the family visitors in and be there with them, not friends I don’t want them to come in to see her until she is well and everything is ok for her, they come to see me here [maternity ward]. Yes, I do need to see them. On Sunday a lot came, so even the staff had to ask them, “Oh you know this visiting time is over” [laughs] (3.5).

There are important reasons to limit and defer some of these participation rights but they are noted here as a reminder of some of the extra difﬁcult differences that parents and babies experience after premature birth. The child’s right to express views freely in all matters affecting the child: the views of the child to be given due weight according to the age and ability of the child (12) The key participation right, to express views freely, involves being able to form views and having the means of expression, and this section begins with expression through the body and the voice. The baby’s cry could be highly signiﬁcant to parents. Anna’s parents had one living daughter and their three other babies had died. Anna was born by caesarean section at 26 weeks weighing only 500 grams, and her mother heard Anna several hours before she could go to see her in the NICU. She cried when she was ﬁrst born which we heard, which was pretty amazing, absolutely wonderful . . . her cry, which was something we thought we’d never hear, it was amazing. Absolutely amazing, it was lovely . . . they said she’s got 50–50 chance of survival (4.1).

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Although they ﬁnd it distressing, parents are pleased when their baby grows strong enough to cry. “It’s nice you can tell when he really has got the hump” (2.1). It is not very easy when he cries but I also know that it is nice that he can cry. It was eerie . . . with all the babies on ventilators . . . at least they can cry when they are off the ventilator. It is a nice sound, human, not that I want him to be in pain . . . it is more that they cry when they don’t like something. They tell you (3.4).

Parents appreciate the nurses who comfort crying babies whose parents are away. Paediatricians are advised to read the babies’ appearance and behaviour, for example, in order to assess and relieve their pain (RCPCH, 1997a), which many practitioners take care to do, such as when a nurse talks gently and soothes the baby while a doctor inserts a line. Babies appear to distinguish between the gentle and painful simultaneous touching (Murdoch and Darlow, 1984) and noticeably cry less and quieten sooner when supported in this way. Not all staff are trained and supported to do this and some nurses hold a baby’s arm still, do not look at the crying baby and walk away when the doctor has ﬁnished, while the baby cries, sometimes for long periods. The units differ in how far they give “due weight” to babies’ basic expressions of distress or pleasure. Babies are most vocal in special care, the ﬁnal room before they go home, which in some units resounds with frequent crying, whereas in other quieter units nursery nurses and parents spend hours cuddling and soothing the babies (Warren, 2001; Bond, 2002). The babies’ expressed views on feeding are central to their healthcare, reviewed in another paper (Alderson, forthcoming). When making the most serious decisions, adults might give, or have to give, “due weight” to the baby’s “views” (however loosely these might be “formed”). Anna’s mother described how twice Anna had rallied, contrary to the doctor’s warnings. And I feel so sorry for him [doctor] because it’s like she’s calling him a liar [laughs], which I am very pleased about. [Once, before the doctors could put her back on the ventilator, Anna’s breathing rate suddenly improved.] It’s like she’s playing games with us here! [And she’s saying] “I’m going to prove them wrong. I’m going to be okay” (4.1).

Anna’s parents decided that they could cope with a child with learning difﬁculties. “What we can’t cope with is no child at all.” But eventually they agreed that if Anna’s breathing failed the doctors would try re-ventilation, despite the extremely low chance of her survival, though they would not attempt resuscitation if her heart stopped. “Stubborn yes, and she ﬁghts hard for her – to sort of get better [but] if her heart was to stop beating that’s her way of saying, ‘I’ve had enough. I can’t cope any more’ ” (4.1). Anna died when she was 4 months old. It cannot be certain that babies “choose” to live or to die, still less express

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a choice by doing so, but neither can it be proved that they have no views on how long they continue the effort to survive when they are extremely weak and ill, or why some babies surmount far greater problems than others manage to. Some parents attributed outcomes partly to their child’s view and personality. Andrew’s mother: Yes, I think he deﬁnitely chose to live, because there were a couple of points where I would have exited. I have to say I would have left this life . . . He was incredibly ill . . . he was dying effectively, and the doctors were saying that, “You know it’s not good,” and I kind of got this feeling that he had decided, “No actually I am not ready to go. I want to live,” because then he would come back in from his sort of dying, and he would be ﬁne. Well not quite but he would be different, and I feel that he chose to live . . . he’s just incredibly determined (1.20).

Some neonatologists similarly spoke in terms of babies’ agency. Int: Do you think there are qualities in babies that help them? 1.23: I think it is remarkable. I have enormous respect for these little babies, and sometimes the way they cling on to life is extraordinary. I don’t know . . . this will to live somehow . . . A – nearly died about three or four times. It was extraordinary how this little body, this little soul kept winning through. So yes, I think there are but I don’t know how to describe that quality but I think it is remarkable.

An important “view” that many babies expressed clearly was their preference to be cared for by their parents and by certain nurses, as if the emotional relationship of care mattered as much to them as the activities of care. There are certain nurses that know an awful lot about Sean, and are very fond of Sean, and Sean is very good when they are looking after him. And there are other nurses that [pause] I would say he picks up on their mood, and if they’re not as conﬁdent with him as some of the other nurses, he does pick up on that, and he gets a bit upset. And I have noticed that quite a lot with him . . . Most of the time you know when he doesn’t want you to touch him, especially when he cries, but there are there are certain nurses that he – it’s kind of, it’s hard to explain, you do feel like he’s taking a certain amount more from some than others . . . (2.1).

When he was two months old (born at 25 weeks), Sean’s mother described his communication. In some units, babies are bathed quickly, but in others the babies set the pace and are wrapped in a sheet at ﬁrst, until they show when they are ready to enjoy the water (Warren, 2001). He’s a very fussy little boy . . . even when he was in an incubator and he had a tube down his throat . . . you would soon know if there was something that he didn’t like, so he’s a good communicator . . . one minute the hands are out there to say “stop”, and the next minute he’s crying cos he wants to be picked up, so he’s very ﬁnicky. [During his ﬁrst bath] he was wrapped up for it but he pretty much decided to degown himself. He enjoyed it. He was amazing, so relaxed, and he cried when I took him out (2.1).

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Countless observed and reported examples in the four NICU showed that many adults were convinced that they were not mechanically caring for the unconscious organisms that some philosophers allege babies to be. Instead, they were interacting within human relationships inﬂuenced by the babies’ views. They conﬁrmed Fischer and Rose (1994): “Because an infant is seen as continuously and actively self-constructing, the task of care becomes one of collaboration with the infant . . . by actively interpreting an infant’s behaviour, one can construct an appropriate care-giving environment [with] even the earliest, most fragile infants.” Als (1999:35–9) advises that repeated detailed observations and records “may then form the basis for care giving suggestions and modiﬁcations in environmental structuring”. The records see “the infant as an active structurer and participant in his or her own development,” with care guided by the infant’s needs and efforts, not purely the practitioner’s plans. Als gives the individual example of adjusting the ventilator settings when the baby is trying to breathe with rather than against the machine. General conclusions may also be drawn from the babies’ views, and from skilled observations, to inform NICU-wide policies to create baby-friendly units when practitioners respect and trust babies and parents (Als, 1999:58). The opportunity to be heard directly or through a representative during proceedings that affect the child, and periodic review (12, 25) Freedom of expression and information (12, 13, 23, 24) of thought, conscience and religion (14) Disabled children should enjoy a full and decent life in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community with the fullest possible social inclusion (23) These articles endorse babies’ rights, through their parents and other caregivers, to the regular and free exchange of information, so that whenever possible reviews, assessments, plans and decisions may be made that take account of babies’ ascertained views and the values of the family. Article 23 partly resolves the potential conﬂict noted earlier between rights to survival and to an adequate standard of living, by advocating disabled children’s fullest possible participation, an aim to which neonatal treatment and preventive care are dedicated. Parents and practitioners are assisted in being informed advocates for premature babies when they have multidisciplinary training and support, libraries and other “access to information and material from a diversity of national and international sources, especially those aimed at the promotion of [babies’] social, spiritual and moral well-being and physical and mental health” (16).

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Conclusion This paper has aimed to illustrate the relevance of participation rights to all children, by showing their relevance to those most likely to be excluded, premature babies. Examples from the NICU illustrate how respect for premature babies’ participation rights is feasible in the experience of some adults who know and care for babies, and treat them as people who can to some extent form and express relevant views. Babies’ rights hold immediate and urgent messages in being the means to set and assess standards of care in neonatal units that promote the babies’ health and welfare, and the family relationships on which they so greatly depend. The protection, provision and participation UNCRC articles are integral and key concerns in NICU policy and practice, whether they are explicitly honoured or not, and because the rights are sometimes disregarded, attention to the UNCRC is an indispensable guide to high standards of neonatal care. The traditional language of children’s interests, needs and welfare tends to emphasise children’s passive helpless dependence on adults’ choices. The newer language of children’s rights, especially of participation, acknowledges that children too can be informed choosers, agents and contributors with views that can guide and inform individual baby’s care and wider neonatal policies and practices. Babies participate by sharing in the creation and growth of families and communities. More than actors, babies can be agents who alter relationships, decisions and the working of social assumptions or constraints (Mayall, 2002:21). The understanding of babies’ rights grows through the understanding of babies’ aware consciousness within human relationships; these two understandings can justify and validate one another. When babies are accepted to have a certain degree of consciousness, certain obligations by adults follow: to value the babies’ present life now, besides their potential and future; and to try to hear and respect babies’ views. In some ways, it is more important that adults respect what they understand to be babies’ views and rights, than that they try to prove that babies have an arbitrary level of consciousness high enough to count as a human-rights-holding personhood, because rights partly become real in being respected, just as babies learn to speak through being spoken to for months as if they can already speak. Conversely, the rights and autonomy of highly competent adults can be denied and ignored, in the example of prisoners of conscience, so that rights exist in perception and relationship besides in objective reality. Children’s rights also exist in an independent reality in the very carefully worded UNCRC, by far the most widely agreed international treaty. And by ratifying the Convention in 1991, the British government undertook to implement it. The UNCRC speaks of all members of the human family, a continuum of life without discrete stages, and the expressive views of premature babies illustrate how

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inclusive and diverse the UNCRC participation rights can be. Freeman (2002) reviews how normative rights become convincing neither through truth claims nor through subjective preferences, but through Kantian concepts of communal or universal “common sense” that imaginatively respects other people’s perspectives or standpoints and their common humanity. This paper has aimed to imagine premature babies’ human perspectives, and also to suggest integral, embodied, and commonly sensed bases for the rights of every member of the human family.

Acknowledgements We are grateful to all the families and staff in the neonatal units who helped with the research, “Foretelling Futures: dilemmas in neonatal neurology”, to Inga Warren, the Advisory Group, the four Local Research Ethics Committees that approved the project, and the Wellcome Trust Bioethics Programme for funding project no. 066458.

Notes 1 2

Numbers in brackets refer to UNCRC articles. “Weeks” indicate the length of gestation.

References Alanen, L., “Explorations in Generational Analysis”, in Alanen, L., Mayall, B. (eds.) Conceptualizing Child-Adult Relations (London: Routledge Falmer, 2001). Alderson, P., Young Children’s Rights (London: Jessica Kingsley, 2000). ——— “Are Premature Babies Citizens with Rights?” Journal of Social Science, (in press). Alderson, P., “Premature Babies’ Protection Rights”, (forthcoming). ——— “Nurses and Informed Consent”, (forthcoming a). ——— Hawthorne, J., Killen, M., Foretelling Futures: Dilemmas in Neonatal Neurology. End of project report (London: SSRU, Institute of Education, 2004). Als, H., Manual for the Naturalistic Observation of the Newborn (Preterm and Full Term) (Boston: Children’s Hospital, 1981). ——— “Reading the Premature Infant”, in E. Goldson (ed.) op. cit., (1999), pp. 18–85. Anderson, G., “Kangaroo Care of the Premature Infant”, in E. Goldson (ed.) op. cit., (1999), pp. 131–160. Bell, R., “A Reinterpretation of the Direction of Effects in Studies of Socialization”, Psychological Review, 1968 (75), 81–95. BMA. – British Medical Association, Withholding and Withdrawing Life Prolonging Medical Treatment (London: BMA, 2001).

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Bond, C., Positive Touch (London: St Mary’s Hospital, 2002). Boxwell, G. (ed.), Neonatal Intensive Care Nursing (London: Routledge, 2000). Brazelton, T., “Psychophysiologic Reactions in the Neonate. 1. The Value of Observation of the Neonate”, Journal of Pediatrics 1961 (58), 508–512. ——— “Introduction”, in T. Brazelton and J. Nugent (eds.) op. cit., (1995) pp. 1–6. ——— Nugent, J. Neonatal Behavioral Assessment Scale, 3rd edition. Clinics in Developmental Medicine no. 137, (London: MacKeith Press/CUP, 1995). Bruner, J., Acts of Meaning (Cambridge MA: Harvard University Press, 1990). Dunn, J., “The Beginnings of Moral Understanding”, in J. Kagan, S. Lamb (eds.) The Emergence of Morality in Young Children (Chicago: University of Chicago Press, 1987). Fifer, W., Moon, C., “The Role of the Mother’s Voice in the Organization of Brain Function in the Newborn”, Acta Paediatrica, Suppl. 1994 (397), 86–93. Fischer, K., Rose, S., “Dynamic Development of Coordination of Components in Brain and Behaviour: a Framework for Theory and Research”, in G. Dawson, K. Fischer (eds.) Human Behaviour and the Developing Brain (New York: Guilford Press, 1994) pp. 3–66. Freeman, M., “Human Rights, Children’s Rights and Judgement”, International Journal of Children’s Rights 2002 (10), 345–354. Gardner, H., The Unschooled Mind: How children think and how schools should teach (London: Fontana, 1993). Glass, P., “Role of Light Toxicity in the Developing Retina Vasculature”, Birth Defects 1988 (24), 103–117. ——— 1993 “Development of Visual Function in Preterm Infants”, Infants and Young Children 1993 (6), 11–20. Goldson, E., (ed.) Nurturing the Premature Infant (New York: Oxford University Press, 1999). Gottfried, A., “Environment of Newborn Infants in Special Care Units”, in A. Gottfried, J. Gaiter (eds.) Infant Stress Under Intensive Care (Baltimore: University Park Press, 1985) pp. 23–54. Graven, S., Bowen, F., Brooten, D., Eaton, A., et al., “The High-Risk Infant Environment”, Journal of Perinatology 1992 (12), 164–72. Greenﬁeld, S., The Private Life of the Brain (London: Penguin, 2000). Harris, J., The Value of Life (London: Routledge and Kegan Paul, 1985). Holt, J., Escape From Childhood (Harmondsworth: Penguin, 1975). HRA – Human Rights Act (London: Stationery Ofﬁce, 1998). Hutchby, I., Moran Ellis, J., (eds.) Children and Social Competence (London: Falmer, 1998). James, A., Prout, A., Constructing and Reconstructing Childhood (London: Routledge Falmer, 1997). John, M., Children’s Rights and Power (London: Jessica Kingsley, 2003). Killen, M., Alderson, P., Hawthorne, J., “Fathers in Neonatal Units”, (forthcoming). Lagercrantz, H., “Opening Address: the Development of Preterm Infants”, International Conference on Infant Development in Neonatal Intensive Care (London, 2003). Linn, P., Horowitz, F., Buddin, B., Leaker, J., Fox, H., “An Ecological Description of a Neonatal Intensive Care Unit”, in A. Gottfried, J. Gaiter (eds.) Infant Stress Under Intensive Care (Baltimore: University Park Press, 1985), pp. 83–111. Mann, N., Haddow, R., Stokes, L., Goodley, S., Rutter, N., “Effect of Night and Day on Preterm Infants in a Newborn Nursery: Randomized Trial”, British Medical Journal 1986 (293), 1265–7.

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Mattiesen, A., Ransjo-Arvidson, A., Nissen, E., Uvnas-Moberg, K., “Postpartum Maternal Oxytocin Release by Newborns: Effects of Infant Hand Massage and Sucking”, Birth 2001 (28,1), 13–9. Mayall, B., Towards a Sociology for Childhood (London: Routledge Falmer, 2002). McHafﬁe, H., Crucial Decisions at the Beginning of Life (London: Routledge 2001). Montgomery, J., Health Care Law (Oxford: Oxford University Press, 1997). Murdoch, D., Darlow, B., “Handling During Neonatal Intensive Care”, Archives of Disease in Childhood 1984 (59), 957–61. Murray, L., Andrews, L., The Social Baby (Richmond: Children’s Project Publishing, 2000). Odent, M., The Scientiﬁcation of Love (London: Free Association Books, 1999). Philbin, K., Robertson A., Hall J., “Recommended Permissible Noise Criteria for Occupied, Newly Constructed or Renovated Hospital Nurseries”, Journal of Perinatology 1999 (1), 559–563. Purves, D., Neural Activity and the Growth of the Brain (Cambridge: Cambridge University Press, 1994). QCA – Qualiﬁcations and Curriculum Authority, Education for Citizenship and the Teaching of Democracy in Schools (Crick Report) (London: DfEE/QCA, 1998). RCPCH – Royal College of Paediatrics and Child Health, Withdrawing or Withholding Life Saving Treatment in Children (London: RCPCH, 1997). RCPCH, Prevention and Control of Pain in Children (London: RCPCH, 1997a). RCOG - Royal College of Obstetricians and Gynaecologists, A Consideration of the Law and Ethics in Relation to Court Authorised Intervention (London: RCOG, 1994). Shatz, K., “Dividing up the Neocortex”, Science 1992 (258), 237–8. Siegal, M., Knowing Children (Hove: Lawrence Erlbaum Associates, 1997). Singer, P., Rethinking Life and Death (Oxford; Oxford University Press, 1995). Strauss, A., and Corbin, J. Basics of Qualitative Research (London: Sage, 1998). Symington, A., Pinelli, J., “Developmental Care for Promoting Development and Preventing Morbidity in Preterm Infants” (Cochrane Database Systematic Review, 2000) (4): CD001814. UNCRC United Nations, Convention the Rights of the Child (Geneva: UN, 1989). Vygotsky, L., Thought and Language (Boston: MIT Press, 1962). Warren, I., (ed.) Guidelines for Infant Development in the Newborn Nursery. Third Edition (London: St Mary’s Hospital, 2001). White, R., “Design of Intensive Care Units”, Pediatrics 1992 (89), 1267. Wolke, D., “Parents’ Perceptions as Guides for Conducting NBAS Clinical Sessions”, in B. Brazelton, T. Nugent, (eds.) op. cit. (1995) pp. 117–125. ——— “Environmental Neonatology”, Archives of Disease in Childhood 1989 (62), 987–88. Wyatt, J., Matters of Life and Death (Leicester: Inter-varsity Press, 1998).

Children and Research: A Risk of Double Jeopardy? LYNN HAGGER Lecturer in Law, University of Shefﬁeld and Chairperson, Shefﬁeld Children’s NHS Trust

SIMON WOODS* Senior Lecturer in Bioethics, Policy Ethics and Life Sciences (PEALS) Research Institute, University of Newcastle.

On the one hand there has been signiﬁcant publicity about the lack of research into drugs used to treat children but, on the other, widespread criticism about unethical research carried out in the past. In addition, some current professional guidelines in relation to research on children unable to consent have been censured for being too permissive. Now, recent legislation in relation to clinical research actually appears to be unduly restrictive. In this paper, we set out to defend the guidelines from an ethical and legal perspective and propose that an even more rigorous approach could be adopted to ensure children are engaged in research. This is not to advocate that the children should be subjected to undue risk nor that those close to them should not be involved in any decisionmaking process. We hope to demonstrate that a more balanced approach is necessary and timely, in the hope that those working in relevant areas gain sufﬁcient conﬁdence to justify their research proposals robustly rather than avoid them because of fear of castigation at the ethics approval stage. This would ensure children are accorded appropriate recognition of their autonomous interests and that they are afforded the same opportunities to beneﬁt from research as adult subjects.

Introduction It should be said at the outset that we recognise the vulnerability of the research subject and, in particular, that where the child is involved. It is not difﬁcult to see that the relationship between researcher and participant is unequal in power. It is the researcher who is likely to be seen as imbued with knowledge, status and will be the active partner rather than acquiescent recipient of intervention(s). These factors are exacerbated when considering the subject may well be ill, in unfamiliar surroundings and, if a child, already unequal in Michael Freeman (Ed.), Children’s Health and Children’s Rights, 51–72. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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the power stakes outside of the research environment.1 The criticism of research carried out in the past on especially vulnerable children such as orphans, the learning disabled and looked-after children i.e. those subject to care proceedings, is entirely legitimate.2 These children were given unproven vaccines that were accepted as risky and not approved for general use without parental consent. Some children suffered signiﬁcant pain and were left with brain damage. Fortunately, now, controls are such that no Research Ethics Committee would approve such a trial. Some researchers believe the pendulum has swung too far in the other direction so that it is well nigh impossible to carry out appropriate research on children. Recent secondary legislation provides that clinical research may only be carried out on children where there is a ‘direct beneﬁt’ for the group of patients involved in the clinical trial. This apparently rules out non-therapeutic research, unless a very wide reading is taken of the term, so that it may include psychological and other beneﬁts.3 This seems unlikely in the current, cautious climate. Some would take the view that this amounts to discrimination against children.4 There is some force to this argument in that the UK Government has recognised the paucity of research with children and that up to two thirds of children in hospital may be taking unlicensed drugs. Overall, other estimates suggest that forty per cent of drugs prescribed to children have never been tested on them and that the ﬁgure rises to sixty ﬁve per cent where newborn babies are concerned.5 As will be seen below, some believe even these ﬁgures are conservative. The UK Government is committed to provide additional funding to encourage research in this area. Its position will be bolstered by the European Commission’s intention to draft legislation within the next two years forcing drug companies to undertake appropriate research on children so that their therapeutic needs are more directly addressed. The proposals follow a period of consultation with relevant stakeholders and will be similar to legislation currently enacted within the United States,6 that will support and promote studies in children to ensure the safety of medicines, many of which are currently used off-label. As things stand, it is estimated that between ﬁfty and ninety per cent of medicinal products used in the paediatric population have never been speciﬁcally evaluated for use in that group. Recent US paediatric studies, conducted in response to US legislation, the Paediatric Exclusivity and the Paediatric Research Equity Act 2002, led to sixty four labels containing new paediatric information for established medicines between July 1998 and February 2004. In forty one cases, the new labels included important new dosing/pharmacokinetic information, lack of efﬁcacy or safety information which had an impact on the safe and effective use of the medicine in children. The Act also established a fund of two hundred million US dollars for the ﬁscal year of 2002 and such sums as were necessary for each of the succeeding ﬁve

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years for the study of the use in the paediatric population of medicinal products for which there was no patent protection or market exclusivity. The situation in Europe has, so far, not supported paediatric studies in this way. However, the issue has been recognised by the European Union and a Council Resolution was passed on 14 December 2000 which called on the Commission to make proposals in the form of incentives, regulatory or supporting measures in respect of clinical research and development to ensure that new medicinal products for children and medicinal products already on the market were fully adapted to the speciﬁc needs of children. The ﬁnal study report from Member States was expected in March 2004 and the extended impact assessment of the Resolution is expected shortly. The draft EU legislation is likely to propose a requirement for new medicinal products and authorised medicines, covered by a patent or supplementary protection certiﬁcate, to present the results of studies in children according to an agreed paediatric investigation plan. This will be required at the time of marketing authorisation application or application for a new indication, new dosage form or new route of administration. It is also likely to propose linking the submission of such data regarding children and the updating of production information to the reward of a six month extension of the supplementary protection certiﬁcate. In addition, there may well be an incentive for new studies on the safety, quality and efﬁcacy of the product in children linked to a new type of marketing authorisation, the Paediatric Use Marketing Authorisation, together with a study programme to fund or part-fund research into the paediatric use of off-patent medicines (Medicines Investigation for the Children of Europe: MICE). The existing pharmaceutical legislation is being reviewed and revised legislation will be applicable in the second half of 2005. These initiatives are to be welcomed but will be to no avail if the conservative approach indicated by the new UK Medicines for Human Use (Clinical Trials) Regulations 2004, hereinafter ‘Regulations 2004’, discussed below, are interpreted restrictively. Nor should criticisms that professional guidelines are out of step with the Declaration of Helsinki be persuasive in changing restricting further the ethical approach to research on children. One commentator has taken the view that those guidelines advocating that such intervention should be ‘not contrary to the [incompetent] child’s best interests’ ﬂies in the face of the Declaration’s commitment to the individual’s interest taking precedence over those of wider society and not being used as a means to an end. For him, this is too permissive an approach and research must be in the child’s best interests.7 With this in mind, we wish to present arguments in this paper that bolster the position of children so that they may become optimally engaged in therapeutic and non-therapeutic research where this is of minimal risk. This may be achieved by ensuring that there are sufﬁciently sophisticated assessments

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of their competence, their empowerment and by a presumption that everyone, including children, wishes to participate in research that does not necessarily involve direct beneﬁt to themselves. This higher level of engagement, supporting autonomous and wider interests, together with the likely beneﬁts that will accrue as a result of research, should avoid the accusation that children suffer a double jeopardy as a result of their current limited involvement. We seek to support those ethical guidelines that facilitate research on children with a more relaxed approach and a broad reading of the recent Regulations 2004. A discussion of the current legal and ethical approach will provide the context for our proposals. Although there is now some statutory basis governing the protection of the participant in clinical trials in the form of the Regulations 2004, the section concerning children’s capacity is sufﬁciently vague in parts that reference to both statute and the common law will still be necessary to ensure legal compliance.8 In light of this and the fact that non-clinical research will continue to be predominantly governed by case law and ethical guidelines, we believe the following examination remains pertinent.

The current legal and ethical framework The Regulations 2004 stipulate that, as far as clinical research is concerned, a parent or legal representative of the child may consent to the child’s participation in research where full information has been given including the objectives, risks, inconveniences, conditions and the right to withdraw at any time. Informed consent is to be given on the basis of the child’s presumed will. This represents a useful shift from the focus on best interests with its inherent difﬁculties of imposing subjective values on the individual concerned. That is not to underestimate the problems of determining presumed will in some cases, but such an approach should help to ensure that the child’s perspective is more likely to be taken into account. There must be no ﬁnancial inducements other than compensation for any subsequent injury or loss. Pain, discomfort, fear and any foreseeable risk must be minimised by the design of the trial with the age and relevant disease in mind, and with the risk thresholds and degree of distress speciﬁcally deﬁned and monitored.9 The child may decide for itself if deemed to have capacity based on information received from a health care practitioner with experience of children. Who determines capacity and what constitutes relevant experience will need to be answered by reference to existing case law and/or other guidance. Most crucially, the provision that the trial must relate to a condition from which the child suffers and is such that it can only be carried out on minors seems broad. The fact that it must be of direct beneﬁt to the group of patients involved in the

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research, however, is restrictive if read narrowly.10 This appears to preclude any non-therapeutic research, which is usually taken to mean that it confers no personal beneﬁt to the research participant. This is to be regretted for the reasons discussed below. The overarching principle that the interests of the child must prevail over the interests of science and society, echoing the sentiments of other relevant instruments,11 emphasises this point.12 This is a principle to be borne in mind when considering involvement of the child in research at any point. In addition, the clinical trial must be necessary to validate other clinical trials where the participants were able to give informed consent or from other research methods.13 The approach advocated by the Regulations 2004 is in line with both international instruments and professional guidelines although the latter are more supportive of non-therapeutic research in some cases.14 Given non-clinical research, such as psychological studies for example, do not fall within the remit of the Regulations 2004 and that its provisions may be challenged at least on a theoretical basis, it is worth brieﬂy surveying the position prior to its enactment.

The competent child and therapeutic research There are no cases directly in point as far as research is concerned but, by analogy, it should be possible to predict that the approach taken in relation to treatment would apply to therapeutic research. S. 8(1) Family Law Reform Act 1969 allows sixteen and seventeen-year-olds to consent to therapeutic and diagnostic interventions. For those children under sixteen, the decision in Gillick15 in relation to treatment suggests that those who are deemed to be of sufﬁcient maturity and understanding, i.e. fully understand all the implications of what is proposed, would be able to consent to participation in therapeutic research where they stand to beneﬁt directly from it. The assessment undertaken to determine Gillick competence should be applied to sixteen and seventeen year olds also given the speciﬁcity of the s. 8(1) provisions. It is selfevident that a sufﬁciently sophisticated assessment of competence is necessary. Given there is no direct precedent, one may assume that, in the event of conﬂict, the courts would refer to professional guidance to set the appropriate ethical standards in such a situation. These broadly advocate the rights of such children to consent to therapeutic treatment, but some guidelines speciﬁcally recommend that the assent of parents should also be obtained unless, in the case of sixteen and seventeen-year-olds, it would not be in the child’s best interests for the parents to be informed in this way.16 This is not the position of the Royal College of Paediatrics and Child Health (RCPCH) where the view is that a Gillick competent child should be able to consent to participation in research

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with no reference to parents.17 At the time of writing, the Central Ofﬁce for Research Ethics Committees offers little guidance which is unfortunate given that the otherwise overarching document is likely to be the ﬁrst point of reference for Research Ethics Committees (RECs).18

The competent child and non-therapeutic research We have seen that the law apparently does not allow non-therapeutic clinical research.19 As far as other types of non-therapeutic research is concerned, one might reasonably assume that the approach advocated by the RCPCH in relation to therapeutic research would be appropriate here in that a Gillick competent child should be able to consent to participation in research with no reference to parents. However, the decision in Re W,20 suggests that the courts are not minded to allow children to consent to non-therapeutic interventions. In view of this, it is probable that researchers will prefer to gain the consent of parents in such a case as recommended more generally by professional guidelines. Where parental consent is withheld but a Gillick competent child has consented, research should probably only be undertaken in exceptional circumstances where a very important study is jeopardised. Who determines this rather qualitative judgment is a moot point. Even where parental consent/assent is forthcoming, it is considered such research should only be undertaken where the risk is minimal.21 It is self-evident that the consent must be real in that it is given voluntarily, free from unacceptable inducements and in the light of full information.22 Earlier remarks about appropriate assessment of children’s competence are equally relevant here.

The incompetent child and therapeutic research Where the child is deemed incompetent by virtue of age or illness, parents will be able to consent to therapeutic research although professional guidelines suggest obtaining the child’s assent in addition would be good practice even where experimental treatment is concerned.23 In Simms v Simms,24 it was held that parents could consent to novel treatment for their sixteen-year-old daughter suffering from new variant CJD. Given there was no alternative therapy available, it was thought that it might halt the deterioration in her condition and would not increase her suffering, this was seen as an entirely reasonable approach. There is some doubt whether a parent could consent to their child participating in a randomised controlled trial given the child will not necessarily stand to gain directly from this.25 It should be noted that the Institute

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of Medical Ethics26 recommends consent of children over seven should be obtained for research and that the Royal College of Physicians27 suggested in addition that the child should be able to refuse even where parental consent is obtained; where they are too young to give consent, proceeding in accordance with parental consent should be undertaken with caution. It is certainly arguable that parental consent should only be seen as one factor to take into account. Parental consent may satisfy legal requirements but not be necessarily ethically justiﬁable where, for example, it is still distressing to an incompetent minor. Here, ethical practice would require the researcher to withdraw the child.

The incompetent child and non-therapeutic research Probably the area of greatest contention concerns the incompetent child and non-therapeutic research. In these cases it is strongly doubted whether parents can legally authorise their child’s participation. In the absence of clear legal guidance in the case of non-clinical research, it is thought such authorisation would not be deemed in the child’s best interests to be engaged in research where he/she does not stand to gain directly. Where the courts have been asked to assess whether proposed interventions are in a child’s best interests, they generally do not consider the wider interests of those caring for the child or of society.28 These other interests might be considered where this may have an indirect beneﬁt to the child however.29 The focus on the individual is understandable but, arguably, short-sighted. Account must be taken of the fact that non-therapeutic research on children is necessary because, they respond differently to drugs and suffer from illnesses that do not affect adults. A case in point is Duchenne Muscular Dystrophy (DMD), a very rare single gene condition, affecting only boys and resulting in premature death. It is only relatively recently that boys with DMD survive to adulthood, but rarely with full mental capacity. The nature of this disease means that there is a need for research at all stages of the disease, but particularly on minor children and in circumstances where such research is unlikely to beneﬁt participants. We have noted also the signiﬁcant number of instances where unlicensed drugs are used in children.30 The RCPCH take the view that, provided it could not be carried out on adults and an appropriate risk/beneﬁt assessment is undertaken, non-therapeutic research is legal and ethical.31 The ﬁrst claim appears somewhat categorical. Although, as we shall see, there is an ethical argument that may be mounted to support the contention that it is permissible to conduct non-therapeutic research on children, this is only lawful if accepted

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by the courts. Parental consent cannot be seen as sufﬁcient to render such research lawful nor would it be necessarily ethically justiﬁable. The law is still unclear, notwithstanding the Regulations 2004, that a court declaration as to the lawfulness or otherwise of any proposed non-therapeutic research where non-clinical research is concerned should be sought where there is concern that risks may be more than minimal. Of course, in the light of the apparent statutory prohibition on non-therapeutic clinical research, the courts may be inﬂuenced by this in relation to other types of research, so that approval is now less likely to be given.

International instruments Edwards has commented that key professional guidelines and certain international instruments are out of step with the Declaration of Helsinki, the cornerstone of approaches to be taken to ensure the protection of research subjects.32 The Declaration of Helsinki states that: In medical research on human subjects, considerations related to the well-being of the human subject should take precedence over the interests of science and society.33

Quite clearly, utilitarian arguments are unlikely to have much force on this basis whereas a deontological perspective, with a focus on the individual from a rights or duty-based approach, can more easily provide the ethical underpinnings of such a statement. Most guidelines concur with this approach, as do the Regulations 2004. Yet the most relevant guidelines in relation to children support the idea that non-therapeutic research on children is legitimate, where it is not against their best interests. A narrow reading of the best interests approach cannot possibly run where there is no direct beneﬁt to the child. A change in emphasis, so that the wider interests of society are taken into account with those of the individual, could be seen as being out of step with the Declaration. However, perhaps the Declaration should be perceived in a similar manner to the European Convention on Human Rights in that it is a ‘living instrument’ developing in line with a rapidly changing society with changing mores as a result of informed debate? While the individual’s interest must continue to be at the forefront of any debate, this must surely be in the context of that individual’s place in society?

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Children and consent – the nature of the problem As we have seen, obtaining consent is seen as pivotal in ensuring legitimate research. In considering the problem of children’s participation in research we view consent as both part of the problem and part of the solution. Part of the problem because consent is problematic for adults as well as children, being generally relied upon to do too much of the ethical work in the context of research. Consent is part of the solution, because a much more inclusive attitude towards children and consent will be of beneﬁt to children. The general thrust of our argument is that research regulation, and legislation, where this exists, is still too paternalistic. This is not a contradiction in terms even when discussing children. We have seen that there are certain conditions that affect only children, and there are treatments used for children that have not been properly researched for use in children. Children are disadvantaged by this position but placed in double jeopardy by the reluctance to allow children to participate in research. We are arguing for a much broader and inclusive approach towards children, and a greater recognition of the diversity that exists amongst children with respect to their capacities. Addressing the issue of consent is, however, only part of the solution. In taking a broad and coherent approach to the problem of children’s participation in research it is necessary to consider the question beyond the issue of consent. In bringing pressure to bear on the prevailing ethico-legal model of children’s consent to research we ﬁnd an initial ally in the general approach adopted by liberal bioethics. Generally speaking, the liberal position can be characterised as one that regards the autonomy of the individual as a powerful trump over concerns for their welfare. Welfare concerns only gain in moral priority when autonomy is diminished. Although this may give good reason to prioritise the welfare of children in the context of research, it is not clear that this is a generalisation that withstands scrutiny. It is not a presumption of liberal bioethics that being a child per se equates to diminished autonomy and therefore, in principle at least, we have the makings of an argument. One of the crucial questions with regard to children’s consent to research is to what extent we should regard children as intrinsically vulnerable, thus giving greater priority to their welfare interests over and above their burgeoning self-determination? The perception of the child as a vulnerable individual has been the metric for regulation and legislation, and is precisely the paternalistic presumption we wish to call into question. We regard this approach as leading to regulatory approaches that are blunt instruments. Although the general liberal approach we have outlined seems to be a good starting point it must be noted that some liberal commentators have qualms about extending full rights to self-determination to children. Joel Feinberg34 offers an argument, the thrust of which could be seen to justify setting the tone

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of regulation at a more paternalistic level than liberals might otherwise be comfortable with, but, if sound, may give good reason to presume that children are rightly regarded as vulnerable. Since this is a threat to our own position we consider this here. Although Feinberg is not addressing the issue of children’s consent to research, his argument is a justiﬁcation of the right to intervene in the lives of children for the sake of the child’s future autonomy, their ‘right to an open future.’ Our interpretation of this claim takes interventions to include restrictive legislation limiting the child’s, and his or her parent’s, right to consent to participate in research. In other words, the very values liberals are at pains to defend forms the grounds on which the conservative approach to children is based. Where a child’s decision or behaviour is such that it threatens his or her own future autonomy it represents sufﬁcient grounds for intervention. Feinberg emphasises that such measures should be regarded as means to hold the child’s right in trust until such a time as the child reaches maturity and has the competence to exercise such a right. In fairness to Feinberg, his concerns are with decisions that threaten the child’s future autonomy in substantive ways, for example, by threatening future health, mental ability, reproductive choice and so on. In the light of these concerns then such measures seem proportionate. However, this kind of argument with regard to children is in principle problematic for liberals. This approach inevitably relies upon stipulating an arbitrary demarcation between adult and child, since there is no ﬁxed correlation between age and capacity for autonomy (particularly if one also takes context into account, for example, the child who is an experienced patient), but rather a loose contingent relationship. There is, therefore, an inevitable Sorites35 problem, which must be addressed. This is not merely a philosophical puzzle but an issue that strikes at the heart of the consent and children in research debate. The problem raises questions, not only concerning the moral justiﬁcation of policies for intervening in the lives of children, but also the widely regarded right of the adult to enjoy non-interference in his or her life. The question of how to respond to the mature minor for example is mirrored on the other side of the stipulated legal (or whatever the divide liberals would consider reasonable) age divide by the problems presented, not only by the immature adult, but any person who has an interest in an open future and can be seen to be forestalling this by the decisions they are now about to make. This of course is a very illiberal conclusion and one that Feinberg would no doubt wish to reject. However, this conclusion can only be avoided by showing why the child, and uniquely the child, should be managed in this way when adults, who all surely share the same interest as children in an open future, should not.

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An alternative legal approach? A more robust approach to allowing children, whether competent or not, to engage in non-therapeutic research we believe is ethically defensible and we have begun to set out the grounds for challenging the traditional approach on the lines set out above. What of the legal position? It is worth bearing in mind that although the United Nations Convention on the Rights of the Child 1989 (UNCRC) underpins the legal framework, it is arguable that some of the key Articles of the UNCRC are not fully reﬂected in practice. In particular, Article 12: . . . the child who is capable of forming his or her own views has the right to express those views freely in all matters affecting the child: the views of the child being given due weight in accordance with age and maturity of the child.

Article 13: . . . the child shall have the right to freedom of expression, (including) freedom to seek, receive and impart information and ideas regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.

We have said that the legal position appears to be clear in that clinical research must relate to a condition from which the child suffers, is such that there is no alternative but to use minors and must be of direct beneﬁt to the group of patients involved in the research.36 We suggest that, although this seems very restrictive, there could be some interesting challenges around the notion of ‘direct beneﬁt’. For example, ‘direct beneﬁt’ could include the psychological beneﬁt of knowing that your research participation has made a contribution to the ‘greater good’. The Human Rights Act 1998 (HRA) could present an opportunity to argue more vociferously than has thus far been the case to support claims for allowing for a greater recognition of the autonomous interests of children. This could include the right to engage in non-therapeutic research. Notwithstanding Lord Donaldson’s negative remarks in Re W 37 when contemplating non-therapeutic interventions, closer examination of the text does reveal a commitment to giving due consideration to the preferences of the minor.38 The notion of evolving autonomy makes far more sense than imposing arbitrary age limits with respect to capacity.39 The approach adopted in Re T ,40 where there is a presumption of capacity allowing for the right to self-determination is suggested as equally relevant for the maturing minor. Such a presumption would, of course, be rebuttable. If the fundamental factor in autonomous decision-making, the ability to make a choice, is taken into account in determining competence, this would extend the notion of Gillick competence. This should be more than the ability

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to understand which relies, to a lesser or greater extent, on whether others approve of the outcome. This approach has been endorsed by the English Law Commission41 and currently enshrined in the Mental Capacity Bill. An appropriate evaluation of adolescent autonomy might need a recognition that the idea of fully autonomous choice is an aspiration and, in reality, only maximally autonomous choice is possible.42 Defects in control, reasoning, information and stability will undermine respect for particular choices. In the case of research, it is axiomatic that the individual must be in possession of sufﬁcient information to make a proper choice and, in the case of a minor, account must be taken of their experience as well as adequate communication with health professionals involved and their parents/carers. Given the conspicuous lack of a successful challenge in the UK to the test for competence as determined by the courts, perhaps this indicates this is set at too high a level. A failure properly to assess children’s competence could, theoretically, breach Article 3 of the European Convention on Human Rights and Fundamental Freedoms, the right, inter alia, not to be subject to inhuman and degrading treatment, under the Human Rights Act 1998 (HRA). However, Strasbourg case law suggests that only the more extreme examples of inhuman and degrading treatment will breach Article 3.43 Currently, a failure to accurately assess competence is unlikely to constitute a breach of Article 3 unless this is then followed by very signiﬁcant medical intervention, such as research, particularly where inadequate levels of information have been provided. Article 8 of the European Convention on Human Rights, which requires respect for private and family life, would be at the centre of any claim now made by the mature minor who believes that their competence has not received sufﬁcient recognition by health professionals and their parents under the Human Rights Act 1998. This may help strengthen the mature minor’s claim for a greater recognition of their autonomy rights and a more sophisticated assessment of competence may assist in acknowledging these. The European Court of Human Rights has given explicit recognition that although no previous case had established a right to self-determination as being contained in Article 8, the notion of personal autonomy was an important principle underlying the interpretation of its guarantees.44 Article 14 may also be engaged. This provides the right not to be discriminated against in the enjoyment of other Convention rights and carries no express public interest exceptions and imposes a positive obligation on states as to the way in which the enjoyment of these rights is secured.45 In formulating a claim about the lack of recognition of competency in the mature minor, age discrimination would seem to be the inevitable focus of any Article 14 discussions. Where it does receive scrutiny, the approach will be to establish whether there is differential treatment or outcome, an acceptable ground for this and whether the resulting difference is justiﬁable.46

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The competency issues for researchers The legal position is a clear indication that today’s society recognises the need to consult children and respond to their views. Clearly, researchers need to be aware of the broad legal framework within which they must operate. Some of the detail of relevant cases help because these highlight the need for, inter alia, involving the child and giving credence to their views. The process itself can empower children and their carers as they are helped to make decisions, adding to their conﬁdence and competence, as well as provide a thorough means of assessing the child’s capacity. This should include taking account of the child’s experience and how this might have had an impact on their maturity and understanding. The exploration of competency must be undertaken to ensure legitimate decision-making. The best decisions will be achieved if wide-ranging views are taken into account, including those of the child and its signiﬁcant others, together with those of relevant experts where necessary. The use of protocols for assessing capacity is advisable. Using age and traditional measures of general intelligence alone is a poor measure of a child’s capacity to have sufﬁcient understanding.47 There must be a recognition of contextual factors emphasising the importance of the social component of cognitive development. It is obvious that children develop at different rates and contemporary research indicates that they can process and interpret the demands of their world, in particular their social world, at a very early age.48 The age of the child is not so important as the ability of the child’s mind to accommodate to its circumstances and needs. Intelligence as a concept is also undergoing radical re-appraisal resulting in psychometric measuring tools that measure intelligence as a multifactorial construct. This infers an acknowledgement that people are now aware that they cannot accurately predict particular competencies from measures of general cognition.49 In sum: Competence is more than a skill, it is a way of relating and can be understood more clearly when each child’s inner qualities are seen within a network of relationships and cultural inﬂuences.50

While bolstering the claims of children to have a greater recognition of their autonomous interests is essential, we believe that additional arguments are also necessary to ensure their appropriate engagement in research.

Children and consent: further complexities We wish to establish that when we talk of children we are not talking of a single homogeneous group. We recognise the legal concept of the child that includes individuals from birth to eighteen years, with only a somewhat

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begrudging recognition of the older child’s right to self-determination by a limited recognition of certain capacities to consent.51 Nor are we talking, in the context of research about a homogeneous activity. There are very marked contrasts between the “straightforward” clinical trial for a new drug and complex, longitudinal, genetic research or epidemiological research project. Here, we will draw on some examples to demonstrate the complexity and range of issues inherent in some research. From these brief analyses, we hope to show that consent is also problematic for adults and children and that too much emphasis is given to consent. As a result there is a need to ﬁnd a more useful approach. We are persuaded that the common good argument that follows provides such a model where there is an expectation that everyone should participate in research albeit within proper governance arrangements to safeguard all participants’ interests.52

Case examples The Avon Longitudinal Study of Parents and Children (ALSPAC)53 and the North Cumbria Community Genetics Project (NCCGP)54 are two of the longest standing genetics databases in the UK and involved the collection of biological samples from women and their newborn children (maternal blood, infant cord blood and placental tissue) in conjunction with lifestyle information which also extends to information regarding partner’s lifestyle. These data are held in the project’s databases and may be made available to other research studies. Haimes and Whong-Barr,55,56 amongst others,57 have expressed their concerns about the range of issues projects of this kind inevitably raise. These concerns include questions about who has a voice and who remains, or is forced to remain, silent in the debates about genetic databases, their creation, governance and future existence. With reference to the NCCGP, they express particular concerns for what they call the “silent participants”, the infants even though they have been ‘properly consented’ in that their parents have consented on their behalf. Not only this, but the fact that the child participants in this project are likely to become unwitting participants in further research during a time period in which they will develop an actual voice. Unwitting because it was agreed that further decisions to use these data in anonymised form would be made by the Local Research Ethics Committee. Recommendations may, but equally may not, include a requirement to seek further consent. With the development of the power of speech, there is also the voice, evidence of the burgeoning capacity to form an opinion, to have a viewpoint, and, in legal parlance, to have the competence to decide for themselves. The custodians of the NCCGP database are clear that the child participants

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will be able to withdraw their samples once they reach the age of sixteen. Setting aside the question of how complete such a withdrawal might be, they are, until that age, essentially silent donors to medical research during a period in which they could feasibly give or withhold their consent at a much earlier point. Whether this is an injustice or not must be a judgement balanced against the merits of the project as a whole and the actual risks posed to the individual by continued participation. Whether a child was or was not included in the ALSPAC or NCCGP studies relied on decisions made by its mother. Continuing involvement in ALSPAC still relies heavily upon parental consent. Evaluative research on this project has revealed, albeit hypothetically, the curious ﬁnding that some dissenting children may be coerced into continuing to participate. Either because parents impose their will on the child or children do not feel empowered to speak out. Although elsewhere adult and child participants also acknowledge the importance of the child’s right to veto continued participation.58 The fact that initial and continuing involvement in these studies relies upon the mother’s consent illustrates some of the complexity that surrounds the issue of presumed competent adults to consent for themselves and their children. Haimes and Whong-Barr59 describe a number of concerns in their evaluation study of the NCCGP project. For example, some mothers regarded the cord blood and placental tissue as waste and therefore not signiﬁcantly attached either to themselves or their child. This raises doubts as to whether they understood that agreeing to donate such tissue was in fact agreeing to their, and their child’s participation in the study. Some respondents reported that they would have asked more questions if the sample had been of a different type, such as venous blood or a cheek swab. Some respondents also reported being uncertain as to whether they donated tissue or not. Of course, if a more invasive sample had been requested, this does not necessarily mean that women’s understanding of the gene bank would have been greater. Haimes and Whong-Barr point to what they see as an important complicating factor, namely, the context in which this study took place. Context includes the fact that these were pregnant women also receiving antenatal care when they were approached to participate in the study. Haimes and Whong-Barr are concerned that if the participants are uncertain about what they donated, how clear can they be about the rationale of the research to which they contributed, or about the nature of the uses to which their information and samples might be put? Clearly these concerns pose serious doubts as to the validity of the consent of these participants, and in turn the validity of the consent for their children. However, despite these concerns, Haimes and Whong-Barr also report that many respondents remained enthusiastic about their participation, reporting motives, which included altruism and the wish to contribute something back to society.

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The NCCGP example is illustrative of two of the issues we are concerned with in our argument. One is the unequal burden placed upon the role of consent to do most of the moral work in the context of research; the second is the need to develop a richer notion of inclusive citizenship. These examples of research demonstrate not just the range of issues, but the moral ambiguity that muddies the water. The complexity of a research project, its context and the uncertainty surrounding the aims of the research sometimes make the ideal of informed consent as the ultimate ethical safeguard an improbable, if not impossible, aspiration, not only for children but for competent adult proxies. We regard this as a complexity that we should both recognise and accept. We do not argue for abandoning consent but rather that we should both recognise and be realistic about its limitations. One implication perhaps is that we should be more willing to allow children an active role in consenting to research recognising that children are sometimes no more vulnerable than their adult proxies. Of course, consent cannot legitimise an ethically ﬂawed or unethically executed research project. Therefore whilst widening the community of those deemed able to consent, we should redouble our efforts to ensure that research is properly governed and regulated. It is with this ﬁnal point in mind that we now turn to consider where society’s expectations of its citizens’ participation in research should lie.

The common good proposal If anything can claim the status of a common good then it is health and the practice of medicine and health care, which aims to preserve and restore it. It is a reasonable expectation within any developed society to receive the best medical treatment and care. The raison d’être of the UK’s National Health Service is to provide this. Whilst it is in everyone’s interests that health care delivery is of the highest possible standard it is not often noted that high standards can only be achieved with the co-operation of those who stand to beneﬁt. The best treatment and care cannot be achieved without proper research. For research to be of most beneﬁt it requires the co-operation of a signiﬁcant number to render the research both valid and generalisable. Willingness to participate is an expectation that can reasonably be had of everyone. The traditional stance in medical ethics, however, is to emphasise the moral responsibility that health professionals have to each individual patient and to ignore the responsibility each person qua patient may have. Health care ethics gains its legitimacy from the fact that it is grounded in common morality, respect for persons, which entails respect for a person’s autonomy. In turn respect for autonomy requires not only respect for an individual’s decision-making capacity but for that patient’s privacy and right to be

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truthfully informed. Respect for persons also requires that we refrain from doing harm to others and that we aim to do positive good to others. One would expect that the rationale for regulation and legislation of research to reﬂect these basics of common morality. The moral duties of health professionals have their foundation in common morality. We wish also to emphasise that every person shares these duties equally. We therefore conclude that an individual’s rights must be balanced against the potential demands made upon them in the interests of the common good. Everyone stands to gain important beneﬁts from health care and expects that his or her care will be of the highest standard. So how should a society that values these beneﬁts characterise the expectations it has of its citizens if they are to enjoy these beneﬁts? One could talk of a moral duty based on an equal expectation of reciprocity from the beneﬁciaries. We would prefer to put this in terms of a moral expectation that each person, the young, the old, the inﬁrm and the healthy, will contribute to medical research. We put the claim in this way because, although there may be a justiﬁed expectation, we would not go so far to say to say that others may convert this expectation into an obligation and unilaterally enforce it. The moral expectation that all citizens will contribute to medical research rests upon a number of considerations. The ﬁrst is that it is part of the general morality that each person should refrain from harming others. The second is that we all have positive duty to do good. The third is that research is in everyone’s interests and it therefore seems only fair to expect everyone to contribute to a service from which each expects to beneﬁt.60 It could be observed that these claims are too demanding given that people who turn to the health care services do so out of need and are inherently vulnerable as patients. It should be emphasised that this claim does not diminish the moral importance of each individual patient, including the right to have his or her personal interests taken into account. Nor does it give licence to health professionals to pursue their research interests without due consideration of their moral and legal responsibilities. However, does being a child weaken one’s moral status or alter one’s moral obligations? We think not, having such an expectation, even of children, should be construed as part of the initiation into good citizenship. Children should grow up socialised into a world in which the society in which they thrive has legitimate expectations in return. This is emphatically not to say that a citizen may not grow up to criticise and ultimately reject the values of their own culture. This is of course an unpopular and admittedly difﬁcult argument to make in the light of Bristol and Alder Hey scandals and the subsequent collapse in the trust of health professionals that has ensued.61 A society can only begin to insist upon such expectations where it has gained and is proved worthy of the trust of its citizens.62 Existing legislation and ethical guidance is designed to afford protection to

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individuals who participate in research. However, the existence of speciﬁc legislation does not alter the fact that, ﬁrst and foremost, all people, patients and health professionals alike have a moral duty of care and a duty not to harm others. So it is a general moral principle that forms the basis of the duty of care each person has to prevent harm coming to others through his or her acts or omissions, and hence the duty to participate in research. This is particularly apposite with regard to children where there has been the historical reluctance to research on children, even where children will be the direct and sometimes the only beneﬁciaries. As we have argued, the expectation that all children ought to participate in research is well-founded. To expect participation in research is to presume willingness to do what any reasonable, moral person should be prepared to do, at least where the risks of serious harm are small or non-existent. This argument stands independently of the issues associated with consent. Failure to obtain consent, either of the child or their parent, may present a circumstance in which one feels that the expectation of participation remains legitimate, but for pragmatic reasons it would be politic not to insist. The sight of a child dragged kicking and screaming from its parent’s arms is not an image that could conceivably contribute to an argument about good citizenship! Of course, the parent and child may never be approached in certain forms of public health monitoring and epidemiological research. What of the law? Does it uphold the ethical principle by offering a balance between the moral expectation as we describe and the duty to act in the best interests of the child currently receiving care, and the wider obligation to future patients who stand to gain from the research? It must be said that this approach is neither fully reﬂected in current legislation nor in case law. There is some evidence that the courts may be sympathetic to the idea that parents may consent to procedures more beneﬁcial to the community where these are not against the interests of the child, i.e. where risks are minimal.63 This should be encouraged, as should a more robust assessment of children’s capacity to consent to non-therapeutic research on their own behalf. This should be determined on a case-by-case basis taking into account such issues as the level of information given to parents and their children in the decision-making process about any risks involved. Thus, each case must be examined on its merits within a general framework of principles not speciﬁc, restrictive regulations. The approach adopted in the US may be instructive. Here, research on children is allowed where: it poses no greater than minimal risk; where it involves greater than minimal risk but offers direct beneﬁt to the individual research subject; where it involves greater than minimal risk but offers no prospect of direct beneﬁt to the subject but may yield information about their condition and where understanding may be advanced about a serious health problem in children. This last category of research requires speciﬁc approval at federal level

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following advice from a panel of experts.64 Although there will always be disagreement about such notions as ‘minimal risk’, independent scrutiny of proposals from experts in a relatively relaxed framework might be one adopted by RECs in the UK provided clearer guidance is established here. Brazier has also argued that judges should not be the ﬁnal arbiters of acceptable practice.65 She suggests the establishment of a code of practice underpinned with statutory force when consent can be given and by whom, overseen by independent expert scrutiny.66 The Regulations 2004 go some way in this regard in that rigorous scrutiny will continue to be provided over research proposals but relevant experts should be co-opted when appropriate. Where children are concerned, it is arguable that it should be mandatory that a paediatrician and/or other relevant professionals should be called upon to advise RECs.

Conclusion The fact that there are some conditions that only affect children and that a signiﬁcant proportion of drugs prescribed for them are untested on the paediatric population, means that research should be increased urgently. This must be carried out within strictly circumscribed limits to ensure children are not exposed to undue risk. However, safeguards to ensure ethical research should not be so rigorous that they make it impossible to recruit sufﬁcient numbers of children for a study to be feasible, otherwise they will remain in the bind of double jeopardy. We believe the proposals contained in this paper strike an acceptable balance between the appropriate protection and empowerment of children together with the needs of the research community by assuming everyone wishes to make a contribution to the overall welfare of the wider community.

Notes * Our grateful thanks go to D. Longley, Reader in Law, University of Shefﬁeld for comments on an earlier draft of this paper. 1 Edwards, S., 2005. 2 The Times, August 30, 2004, p. 9. 3 Schedule 1, Part 4, para. 10, Medicines for Human Use (Clinical Trials) Regulations 2004. 4 E. Webb (2004). 5 The Times, 21 August 2004. 6 Personal communication on the US and EU position in this section from Professor N. Bishop, Consultant Paediatrician, Shefﬁeld Children’s NHS Trust. 7 Op. cit., at n. 1, where the professional guidelines at n. 14, infra, are discussed.

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Schedule 1, Part 4, paras. 1–8 and Principles 13–15. Ibid. 10 Schedule 1, Part 4, paras. 9–10, Regulations 2004. 11 E.g. World Medical Association Declaration of Helsinki (2000). 12 Schedule 1, Part 4, Principle 16, Regulations 2004. 13 Ibid., para. 11. 14 Declaration of Helsinki, supra at n. 11, British Medical Association (2004), Royal College of Paediatric and Child Health (2000) and the Council for International Organisations of Medical Sciences (2002). 15 Gillick v West Norfolk and Wisbech Area Health Authority [1986] A C 112. 16 Department of Health HSG (91) 5, para. 4. 17 RCPCH, op. cit. at n. 14. 18 Standard Operating Procedures for Research Ethics Committees in the United Kingdom, 2004. 19 Op. cit. at n. 10. 20 Re W (A Minor) (Wardship: Consent to Medical Treatment) [1992] 4 All ER 627, CA. 21 Institute of Medical Ethics ‘Medical Research with Children: Ethics, Law and Practice’ (1986) Bull. No. 14, p. 8 usefully deﬁnes the acceptable risk levels in relation to death, major and minor complications. 22 The European Convention on Human Rights and Biomedicine, Strasbourg 1997 broadly follows this approach: ; Treaty 164. 23 E.g. BMA (2004). 24 [2003] 1 All ER 669. 25 I. Kennedy and A. Grubb, Medical Law, (London: Butterworth, 2000, 1718). 26 Supra at n. 21. 27 Op. cit., at n. 14. 28 Re D [1976] 1 All Er 326 and Re B [1987] 2 All ER 506 but note the decision in Re T(a minor) (wardship: medical treatment) [1997] 1 All ER 906, where the court did defer, unusually, to the mother’s wishes over those of the medical team who considered a liver transplant to be in the child’s best interests. 29 Re Y (Mental Incapacity: Bone Marrow Transplant) [1997] Fam. 110 although concerning an incapacitated adult, a very broad reading was given of best interests so that the beneﬁt of saving her sister’s life, meant that her mother would maintain more positive contact with her. 30 Op. cit. at nn. 4–6. 31 RCPCH, op. cit., at n. 14. 32 Edwards, S., (2005) 1; he compares the Declaration of Helsinki with the professional guidelines set out at n. 14. 33 Declaration of Helsinki, (2000). 34 Feinberg, J. (1992). 35 Sorites or the ‘heap’ problem: the classical philosophical problem of judging when one thing has achieved the transition into another when the transition involves small incremental changes. So at what point does the developing child reach the point at which she deserves the respect due to the adult with full capacity? 36 Op. cit. at n. 10. 37 Ibid., pp. 637–639. 38 Op. cit. at n. 37, pp. 637– 639. 39 Lord Scarman in Gillick v West Norfolk and Wisbech Area Health Authority [1986] A C 112 at 186 and M. Brazier and C. Bridge (1996). 40 Re T [1992] 4 All ER 649. 8 9

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Law Com Report No. 231 Mental Incapacity (London: HMSO, 1995) Part III (1). J. Harris, (1985). 43 Z v. UK [2001] 2 FLR 612. 44 Pretty v. United Kingdom [2002] 2 FCR 97. 45 Belgian Linguistic case, Series B, No. 3 (1967), 24 June 1965, 305–6. 46 D. Feldman, (2002, 144–6). 47 See L. Hagger, (2003) for a more detailed exposition of these points. 48 J.M. Mandler, (1990). 49 C. Elliott, P. Smith and K. McCulloch, (1996). 50 P. Alderson, (1992, 123). 51 Given the retraction from the recognition of children’s autonomous interests in Gillick supra at n. 15 in the subsequent cases of, for example, Re R (A Minor) (Wardship: Consent to Medical Treatment) [1991] 4 All ER 177, CA and Re W (A Minor) (Wardship: Consent to Medical Treatment) [1992] 4 All ER 627, CA. 52 Chadwick R., and Berg, K. (2001). 53 ALSPAC (2002). 54 Chase, D. et al. (1998). 55 Haimes, E., & Whong-Barr, M., (2004a). 56 Haimes, E., & Whong-Barr, M., (2004b). 57 Laurie, G., (2002). 58 Williamson, E. et al. (2004, 147). 59 Op. cit. at n. 56. 60 Harris, J. and Woods, S. (2000). 61 The Report of the Royal Liverpool Children’s Inquiry, Jan 2001 () The report of the public inquiry in to children’s heart surgery at the Bristol Royal Inﬁrmary 1984–1995 (Cm 5207(1)). 62 O’Neill, O. (2002). 63 S v S [1972] AC 24 and A. Bissett-Johnson and P. Ferguson, (1996). 64 Code of Federal Regulations paras. 46–50. 65 Brazier, M., (2003). 66 Ibid. at p. 408. 41 42

References Alderson, P. (1992) ‘In the genes or in the stars’ Journal of Medical Ethics, pp. 119–124. ALSPAC (2002) . Brazier, M. (2003) Medicine, Patients and the Law, London, Penguin. Brazier, M. and Bridge, C. (1996), ‘Coercion or Caring: Analysing Adolescent Autonomy’, Legal Studies, 16, 107. British Medical Association (2004) Medical Ethics Today. The BMA’s handbook of ethics and law, London, BMA. Chadwick, R. and Berg, K. (2001) ‘Solidarity and equity: new ethical framework for genetic databases’, Nature Review Genetics 2, pp. 318–321. Chase, D., Tawn, E., Paker, L., Jonas, P. and Burn, J. (1998) ‘The North Cumbria Community Genetics Project’, Journal of Medical Genetics 35, pp. 413–416. Council for International Organisations of Medical Sciences (2002) International ethical guidelines for biomedical research involving human subjects, Geneva, CIOMS databases: a case study of the North Cumbria Genetics Project’ in R. Tutton & O. Corrigan,

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eds. Genetic Databases: socio-ethical issues in the collection and use of DNA, London: Routledge. Department of Health HSG (91)5. Edwards, S. and McNamee, M.J. (2005) ‘The ethical concerns regarding guidelines for the conduct of clinical research on children’ JME. Elliott, C., Smith, P. & McCulloch, K. (1996) British Ability Scales Second Edition (BAS II). NFER-Nelson: Windsor, U.K. European Convention on Human Rights and Biomedicine (1997) Strasbourg . Feinberg, J. (1992) ‘The Child’s Right to an Open Future’ in Freedom and Fulﬁllment, Princeton University Press, Princeton, pp. 76–98. Feldman, D. (2002) Civil Liberties and Human Rights in England and Wales, Oxford University Press. Hagger, L. (2003) ‘A new perspective on cognitive development in infancy’ American Scientist 78, pp. 236–243. ——— (2003) ‘Some implications of the Human Rights Act 1998 for the medical treatment of children’ Medical Law International 6, pp. 25–5. Haimes, E., & Whong-Barr, M., (2004a) ‘Levels and styles of participation in genetic databases: A case study of the North Cumbria Genetics Project’ in R. Tutton & O. Corrigan, eds. Donating, collecting and exploiting human tissue: Social and ethical dimensions of genetic research, London: Routledge. ——— (2004b) ‘Key issues in genetic epidemiology: lessons from a UK based empirical study.’ TRAMES 8, 105–163. Harris, J. (1985) The Value of Life, Routledge. Harris, J. and Woods, S. (2000) ‘What are the responsibilities of the individual when participating in medical research? in: Doyal, L. and Tobias, J. (eds.) Informed Consent in Medical Research. BMJ Books pp. 286–292. Institute of Medical Ethics (1986) ‘Medical Research with Children: Ethics, Law and Practice’. Kennedy, I. And Grubb, A. (2000) Medical Law, Butterworths, London. Laurie, G. (2002) Genetic Privacy: a challenge to medic-legal norms. Cambridge University Press. Law Commission Report No. 231 (1995) Mental Incapacity London, HMSO. Mandler, J.M. (1990) ‘A new perspective on cognitive development in infancy’ American Scientist 78, pp. 236–243. O’Neill, O. (2002) Autonomy and Trust in Bioethics. Cambridge, Cambridge University Press. Royal College of Paediatric and Child Health (2000) ‘Guidelines for the ethical conduct of medical research involving children’, Archives of Disease in Childhood, 82 pp. 178–82. Standard Operating Procedures for Research Ethics Committees in the United Kingdon (2004). Webb, E. (2004) ‘Discrimination against children’, Archives of Disease in Childhood 89 pp. 804–808. Williamson, E., Goodenough, T., Kent, J. and Ashcroft, R. (2004) ‘Children’s participation in genetic epidemiology: consent and control’ in R. Tutton and O. Corrigan, eds.Genetic Databases: socio-ethical issues in the collection and use of DNA, London, Routledge. World Medical Association Declaration of Helsinki (2000), Ethical principles for medical research involving human subjects, Edinburgh, WMA.

Of Newborns and Nubiles: Some Critical Challenges to Children’s Rights in Africa in the Era of HIV/Aids JULIA SLOTH-NIELSEN Faculty of Law, University of the Western Cape, South Africa

1. The international legal framework within which HIV/Aids issues should be addressed Both the UN Convention on the Rights of the Child (1989) and the regional charter for the protection and promotion of children’s rights, the African Charter on the Rights and Welfare of the Child (1990), are silent on the issue of HIV/Aids directly. Nor is this particularly surprising – both were formulated before the impact of the epidemic began to be felt in the developing world, and before the implications of the disease for children could be fully understood. The most substantive elaboration of principle concerning the issues relevant to HIV/Aids and the rights of the child is contained in the Committee on the Rights of the Child’s General Comment No. 3 (2003) entitled ‘HIV/Aids and the rights of the child’ (CRC/GC/2003/1). The Comment commences with the assertion that initially, children were thought to be only marginally affected by the Aids pandemic, but that it is now apparent that children are at the heart of the problem. The majority of new infections are to be found in adolescents and young people, on the one hand, and, on the other, transmission of the disease to newborns during the birth process means that babies and infants constitute another vulnerable group. More generally, all children can be rendered vulnerable to the effects of HIV/Aids through the loss of parental care-givers. Further, HIV/Aids cannot merely be viewed as a health related issue, as numerous other rights (civil, political and socio-economic) can become compromised due to the impact of HIV/Aids. The General Comment afﬁrms the centrality of the four general principles which inform the interpretation of the Convention on the Rights of the Child, namely, the right to non-discrimination (article 2), the right of the child to have his or her best interests taking account of as a primary consideration (article 3), the right to survival and development (article 6) and the right to have his or her views respected (article 12). This seemingly obvious recantation of the four principal rights in the Convention architecture belies, however, some very much deeper questions. Michael Freeman (Ed.), Children’s Health and Children’s Rights, 73–85. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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What is in the best interest of children in the HIV/Aids environment? Can (and should) some rights be accorded a margin of deference (or assigned primacy) over others in relation to some of the practical dilemmas that arise? Is there not an internal contradiction in asserting on the one hand, the rights to survival and development, and, at the same time, the right to non-discrimination, for example? These and other questions are raised with reference to more substantive examples in the following sections of this article, taking as a starting point the framework further elaborated by General Comment no. 3. The General Comment highlights that although the four Pillars of the Convention are central, a range of other Convention rights may be affected, including the right to special protection and assistance by the state (article 20), the right to health (article 24) and the right to preventive health care, sex education and family planning education and services (article 24(f )). With regard to the application of the right to non-discrimination, the point is made that a particular concern is the existence of gender-based discrimination combined with taboos or negative or judgemental attitudes to sexual activity of girls, as this can limit their access to preventive measures and other services (para 6). That girls are disproportionately affected by the spread of the HIV/Aids epidemic is stressed, and States are encouraged to ‘give careful attention’ to sexuality and life styles of teenagers, and to take steps to prevent early or forced marriage which exacerbate vulnerability to HIV/Aids (para 9). A State’s response to HIV/Aids should, according to the General Comment, be centred on the mutually reinforcing elements of prevention, care, treatment and support in order to maximize effectiveness. Part of the prevention leg involves ensuring children’s access to appropriate sex education and information about sexuality to equip them to protect themselves and others against infection, even in settings where this is not the cultural norm (paras 13 and 14). The educational imperative is stressed further at para 27, where it is stated that ‘reducing HIV/Aids related vulnerability requires ﬁrst and foremost that children, their families and communities be empowered to make informed choices about decisions, practices or policies affecting them in relation to HIV/Aids’. The Committee on the Rights of the Child expresses the view that health services are generally not responsive to the needs of persons aged below 18 years, and in particular, adolescents (para 17). The requirements for enhanced health service delivery suggested include services that are accessible, affordable, conﬁdential, non-judgemental, do not require parental consent, and do not discriminate (para 17). Services should incorporate voluntary counselling and testing, conﬁdential sexual and reproductive health services, free or low cost contraception, condoms and services, as well as HIV-related care and treatment if and when needed, including treatment for the prevention of health problems related to HIV/Aids, such as tuberculosis and other opportunistic infections.

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However, the General Comment requires State Parties to refrain from imposing mandatory HIV/Aids testing in all circumstances and to ensure protection against such testing. Where testing is undertaken on a voluntary basis, the evolving capacity of the child will determine whether the necessary consent is required from the child directly, or from a parent or guardian. Sufﬁcient information must be conveyed prior to testing to ensure that the required consent is adequately informed (para 20). Test results must be kept conﬁdential, in accordance with the child’s right to privacy (enshrined in article 16 of the Convention on the Rights of the Child). The conﬁdential status of HIV/Aids results is explicitly extended to health and social welfare settings, and it is further provided that information on the HIV status of children may not be disclosed to third parties – including parents – without consent (para 21). The General Comment identiﬁes mother-to-child transmission (MTCT) during pregnancy, labour and through breastfeeding as the primary cause of infection in infants and young children. The provision of essential antiretroviral drugs, appropriate antenatal, delivery and post partum care, access to HIV counselling and testing services for pregnant women and their partners, are amongst the recommended steps to be implemented by State Parties. In addition, the provision of counselling on infant feeding options and guidance in selecting the option most suitable to the speciﬁc situation are dealt with. The Committee emphasizes that breastfeeding remains the preferred feeding choice for uninfected women and women who do not know their health status, but recognizes that breastfeeding can increase the risk of HIV transmission signiﬁcantly. However, given that an absence of breastfeeding can expose children to other ills such as malnutrition or infectious disease, the policy position is that replacement feeding in the case of HIV positive mothers should only be advocated where it is affordable, feasible, sustainable and safe (para 24). Perhaps the most crucial characteristic of the General Comment is the formal recognition it accords to the phenomenon of child-headed households within the international law framework (see para 28). The Comment underlines that legal, social and economic protection is required for children living in child-headed households and orphans to ensure that other rights are protected and fulﬁlled. Speciﬁcally, inheritance and property rights need to be afﬁrmed legally and in practice. Continued access to education is regarded as vital, and birth registration constitutes a critical mechanism for ensuring proof of identity to ensure the safeguarding of other rights. The overall philosophy of the approach of the Committee on the Rights of the Child is that ‘orphans are best protected and cared for when efforts are made to enable siblings to remain together, and in the care of relatives or other family members’. Institutional care should play only an interim role, and then only when family based care within the community is not available. All forms of

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institutional care should be considered to be a last resort, and limits should be placed on the length of time that children spend in an institution (para 32). Programmes must support the eventual reintegration of orphaned children – whether they are themselves infected or not – into community life. A subsequent General Comment on Adolescent Health and Development in the context of the Convention on the Rights of the Child (General Comment no. 4 CRC/GC/2003/4), reafﬁrms many of the principles covered in General Comment no. 3. These include obligation to safeguard by law the adolescent’s right to medical treatment without parental consent, the need to respect the adolescent’s rights to privacy and conﬁdentiality of medical information, the obligation to take steps to raise the minimum age of marriage, and the need to provide access to adequate information essential for adolescent health and development. Speciﬁcally mentioned in this regard is access to sexual and reproductive information including family planning and contraception, regardless of parental consent (para 21). States are encouraged to develop measures to change cultural views about adolescent’s need for contraception and the prevention of sexually transmitted diseases, and to address cultural and other taboos surrounding adolescent sexuality (para 23). It is submitted that the norms and principles outlined above raise a number of challenges for both children’s rights practitioners and theorists. In addition, the insistence on recognising and requiring services to address children’s evolving sexuality, whilst no doubt realistic, poses enormous threats to prevailing cultural and religious values in many traditional African settings. The ensuing section will endeavour to begin to explore some of these issues with reference to some speciﬁc issues that arise in the context of HIV/Aids.

2. Recognizing the legitimacy of child-headed households as social units The ﬁrst theoretical dilemma raised here concerns the recognition and protection (including through legal reform) that the General Comment requires to be afforded to child-headed households. Child-headed households are generally regarded as being households with younger children where the main care-giver him or herself is aged below 18 years (Sloth-Nielsen 2004). The main objective of legal recognition is to ensure the provision of social services, adult guidance, and access to social grants (in South Africa, at least) to children being raised in households headed by persons who themselves are aged below 18 years. Protection of property rights and some recognition of the quasi-adult legal status of the (child) care-giver are further goals. In South Africa, for instance, there is already the beginnings of a process of law reform statutorily to deﬁne and recognize child-headed households as fam-

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ily units. The Social Assistance Act 13 of 2004 provides that a grant may now be received by a person of 16 years or older, a shift downwards from the previous minimum age of 18 years. The Act also refers to child-headed households in the deﬁnitions section, although this is currently without real meaning as the actual content and scope of this deﬁnition can only be ascertained by a cross reference to the (as yet incomplete) Children’s Bill 70 of 2003, which is destined to contain a more substantive elaboration. The Children’s Bill, currently before Parliament, is likely to contain further clauses aimed at securing legal protection for children in child-headed households,1 although the nature and scope of the further provisions has been the subject of heated debate. Similar law reform endeavours are underway in Swaziland, Mozambique and Lesotho, although none has reached the stage at which legislation has been tabled in Parliament. However, inasmuch as a children’s rights approach supports treating children as subjects rather than as objects, and advocates a dynamic engagement with concepts such as children’s evolving capacity, agency and ability to inﬂuence and participate in processes associated with their development, it could be contended that this is a far cry from a formal jurisprudential position that endorses the premature award of adult status and responsibility to children and adolescents who themselves are entitled to the beneﬁts of the status of childhood. In the African context, the special vulnerability of children heading households has been described eloquently: Children, especially girls, face more general household duties, care of the sick and of younger children. These tasks and the lack of resources in the household often cause children to drop out of school. Under these circumstances, children may be forced onto the street, into criminal activities or even exploitative forms of child labour . . . in situations of extreme poverty, child headed households are unsustainable. Children ﬁnd their way onto the streets where they become involved in commercial sex work, beg, steal and do menial tasks. (Children in 2001: 88)

In South Africa, available data indicates that because four times more women than men are infected by HIV/Aids, the risk of children losing mothers who generally fulﬁll the primary care-giver role is especially signiﬁcant. In 2002, 150,000 children lost a mother due to HIV/Aids, and this ﬁgure is expected to rise signiﬁcantly over the next half decade as people with existing HIV/Aids infections acquire full blown Aids. (Children’s Institute 2003: 36). Estimates by Unicef in Lesotho indicate that there are 73,000 orphans aged 0–14 years, ie 8.3% of the children in that age group. The HIV/Aids prevalence rate amongst pregnant women aged 15–19 years is 25%, based on 1999 statistics. Today’s 15 year old will have, at present infection rates, a 74% chance of contracting HIV/Aids before the age of 50.2 Similar data prevails elsewhere in sub-Saharan Africa.

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Further, the ideal of alternative kinship care in community settings is rapidly fading, as the capacity of communities to continue to absorb orphaned children decreases. In addition to the risk factors relating to acute marginalisation and involvement in some of the worst forms of child labour outlined above, research has indicated a range of other needs that arise in the context of HIV/Aids and childheaded households. Children frequently need relief from the arduous duties associated with caring for terminally ill parents. They may require bereavement support and psycho-social care. They may have suffered severe discrimination on account of the HIV/Aids status of their primary care-giver, to the point where child and adult are expelled from the extended family circle when the care-giver’s HIV status becomes public. Moral guidance and mentoring from adult quarters after the death of a primary care-giver may be entirely absent. All the children living in the household may experience heightened difﬁculties in accessing available services, such as the acquisition of birth certiﬁcates, and their capacity to negotiate hurdles posed by ofﬁcialdom (e.g. in the education system) is exacerbated by their youth and vulnerability. These less obvious threats to sound growth and development are brought to the fore by an approach which recognizes child-headed households as autonomous family forms, because such an approach proceeds from an assumption that the household can indeed function as such. Second, there may be an inherent conceptual dilemma created by recognizing child-headed households as independent units in society, in that this step can signiﬁcantly undermine the overarching message that the protection of a child rights approach should extend to all children aged below 18, a message successfully encapsulated in the African Charter on the Rights and Welfare of the Child (in article 2).3 The view that childhood should be a golden age, symbolized by innocence, freedom, play and recreation, and characterised by the absence of adult-type responsibility is undoubtedly an idyllic image and one which is obviously mitigated by the reality of poverty, exploitation, hunger, war, and so forth (Human 2000:154). However, this vision surely remains an ideal that lies at the core of efforts progressively to improve access to the protections enshrined in the Convention on the Rights of the Child and related documents.4 The risk exists that dilution of the minimum age for entry into adulthood in one sphere could jeopardise the achievement of uniform norms and principles in others – the minimum age for protections regarding commercial sex work, for example.5 Another danger is that whilst purporting to empower children living in child-headed households, and whilst maintaining that this will increase their access to protective services, formal recognition of their capacity to regulate their own family life may in fact disguise further neglect and degradation. Indeed, inasmuch as the approach of the General Comment is generally that

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families and communities, rather than government actors, lie at the forefront of the ﬁght against HIV/Aids, the point has been made that this approach could provide a ready excuse for States to abdicate responsibility for orphaned children who are subsisting, after a fashion, in a form of family type care in a community setting (Sloth-Nielsen: 2004). Similarly, theoretical (or even legal) acknowledgement of the autonomy of the child-headed household as a functioning societal unit raises the spectre of a State retreat, along the lines of the approach which characterized the ‘hands off’’ relationship between States and the private lives of (conventional) families for much of the previous century. And, in African contexts, where resource constraints prevail and are often adduced by governments attempting to defend inaction and non-delivery, this risk is real. Yet, it cannot be denied that African countries faced with large scale orphanhood, coupled with the prospect of a steadily diminishing community capacity to take on parental functions towards all vulnerable children, are possibly not at liberty to ignore the realities that confronts them in an era characterized by the emergence of child-headed households. This view might encompass, too, that a utopian, purist approach which reserves the title of ‘family units’ only for kinship groups headed by adults is simply a Western construct, especially given the prevalence of such phenomena as early marriage and teenage pregnancy on the continent. It could therefore be contended that recognition (legal and otherwise) of the issue, rather than denying its existence, enables concrete measures to be developed. A good example of this might be in the terrain of inheritance laws, where countries in sub-Saharan Africa are exploring ways of protecting children against dispossession of the family property after the death from HIV/Aids of care-givers, even though, as children, they are not liable to inherit directly under customary law.6 On balance, no view is expressed at to which route (recognition of childheaded households or not) is preferred, and it can be concluded at this point that the issue is worthy of far more extensive debate within child rights circles. Due regard should be had to the inherent tension that exists between the right to autonomy (children are best off growing up in community settings where siblings can be kept together) and the right to protection.

3. Child and adolescent sexual health in the HIV/Aids context A second theoretical conundrum arises in the context of adolescent sexuality, parental consent, and access to concrete reproductive services and technologies. The principled position advocated in the General Comments of the Committee on the Rights of the Child, as explained above, relies on the premise that access to information and services for prevention (such as contraception)

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and to reproductive technologies should be freely available to children and adolescents, without regard to a particular age, and independent of parental consent. Again, this must, from a variety of perspectives, be regarded as controversial. For one, it calls into question the parallel status of protective legislative regulations ﬁxing a minimum age at which children may legally consent to sexual intercourse – generally to be found in sub-Saharan Africa, as elsewhere (Shaffner 2002:214). If pre-teens can freely access contraception and other services in the reproductive health ﬁeld, what does that imply for the intended beneﬁcial protective mantle of minimum age laws? Two, it appears to negate totally the parental role in providing guidance and advice (as elements of the furnishing of consent)7 in children’s evolving sexual lives, as access to contraception should be guaranteed in the absence of parental knowledge. As stated, no speciﬁc age is provided for in this regard,8 nor are the blanket access to contraceptive and other reproductive health services provisions contained in the General Comment apparently linked to the well-known concept of children’s evolving age and maturity, a test which has conventionally been supported by children’s rights authors to determine the threshold for seeking children’s (rather than parents’) consent.9 [However, it is mentioned that HIV counselling and testing services should be provided in a way which pays attention to the evolving capacities of children (para 19), and that it is the child’s evolving capacity that will determine whether children’s or parent’s consent to HIV/Aids testing is required. Access to HIV/Aids testing, I would argue, does not necessarily involve the same considerations as access to contraception might do, for example.] In view of bold position in recognising the full autonomy of children (not only teenagers) in determining their own access to preventive and other reproductive health services, it is submitted that the General Comment could be regarded as breaking new ground at the international level.10 Third, the General Comment extends the above thinking even further in para 21, which provides that State parties must protect the conﬁdentiality of HIV test results consistent with the obligation to protect the right to privacy of children (article 16),11 including within health and social welfare settings, and information on the HIV status of children may not be disclosed to third parties including parents without consent. (emphasis added)

It is self-evident that the underlying reasoning rests on the prevalence of discrimination against persons known to have HIV/Aids and the risk that once so identiﬁed, a child or adolescent may be marginalized or even excluded from his or her family or community setting. Yet the notion that the acquisition of a transmissible and potentially incurable disease by a child may not be revealed to his or her care-givers without the child’s consent (in the context of consid-

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erations such as the proven beneﬁts for delaying the onset of full blown HIV/Aids of improved nutrition and timely responses to opportunistic infections) must be contentious. It not only heralds an approach which may compromise the ability of parents to provide the nurture and support they are required to do; potentially (at a theoretical level) does it not risk demeaning the familial tie between parent and child in the quest to acknowledge the child’s right to self-determination? 12 However, it must also be stated that the countervailing considerations which have inspired the approach taken in the General Comment are well articulated and are undoubtedly valid: ‘. . . children are more likely to use services that are friendly and supportive, provide a range of services and information, are geared to their needs, ensure their opportunity to participate in decisions affecting their health and are accessible, affordable, conﬁdential, non-judgemental, do not require parental consent and do not discriminate.’ (para 17). Nevertheless, seen together with the recognition of child-headed households as independent family units, it appears that recent trends in the HIV/Aids context support a nascent construction of children as autonomous mini-adults, in fundamental contrast to dominant Western conceptions of children as ‘prepeople’, (Mayall 246), that is, incompetent, uninformed, and inadequate. Also, the approach of the General Comment masks the anomalies that may arise where children’s rights are concerned in the HIV/Aids context. Giving full effect to children’s right to privacy could pave the way to compromising children’s rights to adequate parental care. Granting unfettered autonomy rights in the area of reproductive health may undermine a range of protections designed to prevent exploitation and unwise decision-making.

4. HIV/Aids testing and alternative care for infants More practical concerns are raised by the some of the issues related to HIV/Aids testing and access to alternative care for babies and infants. While is it entirely consistent with a general human rights agenda that mandatory testing of all children should be absolutely proscribed, the question that arises is how realistic this is in certain settings. Access to adoption (including intercountry adoption) and foster care services frequently depend on the receiving substitute parents having been furnished with adequate knowledge of a child’s HIV/Aids status, and HIV/Aids testing of available infants is reportedly quite routine in these situations in practice. As a general proposition, practitioners assert that testing thus furthers access to appropriate care and placement (for both HIV positive and HIV negative babies), which is in children’s best interests, as institutional placement may be rendered unnecessary. Would a

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children’s rights approach be completely compromised by relaxing the prohibition on mandatory testing in relation to adoption and foster care procedures? The need for mandatory testing is frequently at issue in social welfare settings, too, since there may be a need in practice to protect uninfected infants (and indeed the care-giving adults themselves) from acquiring HIV/Aids from those who are infected, particularly in the institutional care system. Toddlers and small children play, fall and injure themselves, and engage in normal robust physical contact which can ultimately lead to contact with bodily ﬂuids. The absence of certainty about a child’s HIV/Aids status poses signiﬁcant challenges, and can place uninfected children at serious risk. Yet the General Comment proscribes testing in social welfare institutions.13 Another practical difﬁculty related to consent to testing in the case of infants arose for determination in a South African court in 2003, in the case of Ex Parte Nigel Redman NO (unreported case 03/14083).14 Existing provisions of the Child Care Act 74 of 1983 provide that a child aged over 14 years may grant consent to medical treatment (which has been interpreted to include HIV testing) without parental consent, but for children aged below 14 years, either parental or Ministerial consent must be obtained, unless the matter is urgent, whereupon the medical superintendent of the hospital where the child is being treated may substitute his or her consent for that of the parent or guardian. In this instance, treatment would be narrowly deﬁned to include treatment necessary to preserve the life of the child or to prevent serious injury or disability – i.e., a need urgent enough to warrant dispensing with the parent’s consent. The facts of this case did not reach the level of urgency required to allow the medical superintendent to furnish consent. This case involved a clinical research trial at a public paediatric hospital, in association with an academic institution, which trial involved the provision of anti-retroviral therapy to HIV positive children and their families. The ethics committee of the academic institution approved the study, with the proviso that informed consent be obtained from the legal guardians of all child participants. However, three were maternal orphans, and in one instance, both parents were deceased. Legally, the acquisition of consent was impossible, yet to exclude those children from the ambit of the study would have had the effect of denying from them the beneﬁt of potentially life saving medical treatment. An urgent court order had to be sought in order for the treating doctor to be authorized to proceed with the research and treatment. When further funds were obtained to allow a greater number of children to be included in the study, the same problem arose a second time, necessitating another approach to a court. Commenting on the case, the public interest attorney concerned argued that a fundamentally different approach is required to issues of consent in the context of a catastrophic Aids epidemic and growing orphan population

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(Gerntholtz, L., 2003:13), since legal processes involving such continued applications to courts are ﬁnancially out of reach for most in the context of a developing country. Consent, in the context of newborns and babies in a world of HIV/Aids, can be a barrier to desirable and advantageous services, she implies, rather than serving the protective function originally intended. A ﬁnal example is drawn from emerging practice in the Southern African region.15 This relates to endeavours underway to develop separate registers listing orphans, children living with HIV/Aids, and children rendered vulnerable due to the fact that their parents or care-givers are ill with HIV/Aids (evidently known as vital registration). Clearly inspired by the entirely laudable motive of ensuring that children do not fall through the cracks, as the colloquial term goes, and that those most at risk are identiﬁed so that service provision can be expedited, it cannot be ignored that the future existence of a register of this nature (not to mention the various uses to which it might be put) is arguably in direct conﬂict with the non-discrimination principle which enjoys such a primary status in international children’s rights law. The very act of creating a separate listing of the affected group could be regarded as a discriminatory step, the best interests of the group concerned nothwithstanding.

5. Conclusions Some of the issues I have raised in the substantive parts of this article might suggest a conservative agenda – deny young children access to sexual reproductive services if they do not have parental consent; parents have the right to know the HIV/Aids status of their children. (I do not intend to propose either in quite such stark terms!). Then, again, it might be argued that an alternative extreme represents a rabidly liberal stance – let children form their own families, sanctioned by law if needs be, and allow them near complete autonomy and choice, chronological age notwithstanding. I have tried to show that this approach, too, may not ultimately serve the children’s rights agenda. What this article has attempted, however, is to encourage a process of deeper discussion to assess the (changing?) construction of childhood, as well as emerging tensions between rights, occasioned by the HIV/Aids epidemic in this region. This surely lies at the heart of debates as to the manner in which State’s laws, policies and programmes should respond to the phenomenon, so as to further the best interests of children – qua children.16

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Notes This is based on the suggestion of such provisions in the South African Law Reform Commission’s Report on the Review of the Child Care Act (2002), which contains a draft Bill on which the Children’s Bill that was tabled in Parliament is largely based. 2 Taken from “HIV/Aids in Lesotho” UNICEF September 2003. 3 The applicable provision of the UN Convention on the Rights of the Child is a less rigid benchmark, as it appears to permit treating those who in national law have attained majority whilst aged below 18 differently. See Gose, M., 2002. 4 Such as the two optional protocols to the CRC. 5 Some feminists would assert the right of autonomy of occupation over a ‘straight’ minimum age below which commercial sex work is proscribed. 6 Mozambique and Lesotho provide two examples where such revision of the laws of inheritance are underway. In South Africa, in the recent case of Bhe v The Magistrate, Khayalitsha (CCT 49/03), the Constitutional Court of South Africa struck down the rule of male primogeniture in the customary law of inheritance, holding that it constituted discrimination against girls. At the time of writing the full judgment was not available. 7 Consent is often viewed from the starting point that it is going to be withheld, whereas this statement proceeds from a perspective that sees informed consent as being linked to guided decision-making, assessment of alternatives, and post-decision support. 8 See note 10 below. 9 In the renowned case of Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112 the House of Lords said that parental rights yield to the child’s right to make his own decisions when he reaches a sufﬁcient understanding and intelligence to be capable of making up his own mind on the matter requiring a decision. See further Freeman, M., Removing rights from adolescents in The Moral Status of Children, Martinus Nijhoff Publishers, The Netherlands, 1997. 10 Domestically, South Africa’s Choice on Termination in Pregnancy Act 92 of 1996 permits a minor child to seek and undergo a termination of her pregnancy without the knowledge or consent of her parents or guardian. 11 Referring to the relevant article of the UN Convention on the Rights of the Child. 12 The South African Children’s Bill of 2003 will, if adopted in present form, provide for a child of 12 years or older to be competent to consent to an HIV/Aids test without parental assistance, and to have access to reproductive health services. 13 Based on material gathered and interviews undertaken by the author during the course of an unpublished study conducted in residential institutions in the Western Cape in 2004, commissioned by the Provincial Government of the Western Cape. 14 Discussed in Gerntholtz, L. 15 The country concerned in best left unidentiﬁed. 16 There is an extensive legal revisioning process occurring in the sub-region, with Lesotho, Swaziland and South Africa all concurrently undertaking child law drafting processes. Mozambique has also completed a legal review of child law with the view to drafting comprehensive children’s law. 1

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References Children’s Institute, University of Cape Town, 2003, The situation of children in South Africa. Gerntholtz, L., HIV Testing and treatment, informed consent and AIDS orphans, vol. 4 (3) Economic and Social Rights Review in South Africa 11. Gose, M., 2002, The African Charter on the Rights and Welfare of the Child, Community Law Centre, University of the Western Cape. Human, S., 2000, The Theory of Children’s Rights in C.J. Davel (ed.) Introduction to Child Law in South Africa Juta and Co Cape Town. Mayall, B., The sociology of childhood and children’s rights, vol. 8 (3) International Journal of Children’s Rights 243. Ofﬁce of the Rights of the Child – The Presidency (South Africa), Children in 2001. Sloth-Nielsen, J., Realising the rights of children growing up in child-headed households: A guide to laws, policies and social advocacy (Cape Town: Community Law Centre, University of the Western Cape, 2004). Shaffner, L., An age of reason: paradoxes in the U.S. legal construction of adulthood, vol. 10 (3) International Journal of Children’s Rights 201 at 214. South African Law Reform Commission, Report on the Review of the Child Care Act (2002). UNICEF “HIV/Aids in Lesotho” September 2003.

Rights of the Autistic Child ROSALIND EKMAN LADD Professor of Philosophy Emerita, Wheaton College Visiting Professor of Bioethics, Brown University

Introduction Autism and the related pervasive developmental disorders present ethical issues quite unlike most other typical physical or mental childhood conditions. How can parents give informed consent for treatment when the cause of the disorder is not known, prognosis is extremely difﬁcult and uncertain, the diagnosis covers a wide spectrum of abilities and disabilities, and there is primarily only anecdotal evidence of efﬁcacy of treatment? How can physicians, psychiatrists, and other professionals make recommendations to parents when they lack evidence-based data to support one treatment over another and when there are inherent difﬁculties in designing the research that might provide answers? In addition, there are funding issues complicated by controversy over some of the most commonly used methods: is it medical treatment or special education? To put the issues in terms of children’s rights, we may ask: Does an autistic child have the right to treatment? If so, what kind? Does the autistic child have a right to be left alone and not forced into society’s criteria of what is normal, as some people claim? Does the child have a right not to be subjected to physical punishment, even if it is the only thing that seems to achieve control of selfinjurious behaviour? And ﬁnally, does he or she have a right not to be an experimental subject or, rather, a right to be included in experiments, on the hope that one of them will produce important new knowledge? This paper will address these issues, in an effort to bring attention to the rights of children whose illness or disorder or treatment does not ﬁt into typical patterns. The rights of autistic children has been a neglected topic: a search in the archives of the Journal of Autism and Developmental Disorders, for example, shows only one article on autism and ethics (Gerhardt et al., 1991). It is time, then, to turn a philosophical spotlight on the topic.

Michael Freeman (Ed.), Children’s Health and Children’s Rights, 87–98. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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Description of Autism According to the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM IV), autism is a subtype of a wide group of disorders known as Pervasive Developmental Disorders. The diagnosis of autism is made when a child displays at least 8 of 16 listed symptoms. Common characteristics or symptoms include: marked impairment or total lack of verbal and nonverbal communication, often occurring as a regression from earlier use of language; impaired social interaction, with the child seeming to live in a world of his own and unresponsive to other people; self-stimulating behaviour such as rocking or spinning. Children may be severely affected or high functioning, may be mentally retarded or not. Diagnosis is generally made between ages two and three and the disorder occurs three to four times more often in boys. The incidence of autism and PDD diagnosis is estimated to be from 1 in 166 to 1 in 500. Furthermore, the incidence is increasing at an alarming rate: California reports an increase of 634% between 1987 and 2002 and Denmark reports a 500% increase. Denmark’s count includes only full syndrome autism, so the increase cannot be attributed to the use of an increasingly wider deﬁnition.

Treatment Options and Informed Consent Medical treatment for children requires parental informed consent. Informed consent requires good information, but there are many unknowns about the treatment of autism. Without good outcome data, however, how can parents be said to be informed and give valid consent? Parental consent is compromised in a more important practical sense, as well. The options for treatment for a particular child can be very limited, since the special schools or programmes are labour-intensive, requiring trained staff often on a one-to-one ratio with the children. Needless to say, the programmes are expensive and even with state funding, which often has to be argued for in each case, waiting lists can be long. Programmes in high demand may accept new children only at age 2 or 3, which further limits parents’ choices. Where options do exist, choice among treatments can be a stab in the dark. There are many theories and many programmes that claim to have success at reversing or eliminating the symptoms of autism, but there are no good controlled studies to show that a given treatment works or works over the wide spectrum of children who are said to be autistic. There are no established standards of practice. Parents are at the mercy of whatever programmes may be available in their geographic area or whatever their school district or medical

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insurance will pay for, and may have to rely on word of mouth from other parents, often long distance through the internet. Nor can parents always have conﬁdence in the studies that have been published in the scientiﬁc literature, for they sometimes have turned out to be unreliable. For example, one of the ﬁrst explanations of the cause of autism was published in 1943, attributing it to failure in mother-love or “refrigerator parents.” Later studies, based on a large number of cases, showed no difference in parental warmth and responsiveness between parents of autistic children and parents of non-autistic children in a control group (Kotsopoulis, 2000). More recently there was another example of claim and counter-claim which excited a great deal of interest. In 1998 an article in The Lancet reported a link between immunizations and the onset of autistic symptoms (Wakeﬁeld, 1998), but that result was invalidated in another study in 2002, based on a much larger number of cases (Madsen et al., 2002). Given the absence of good scientiﬁc data, it is tempting to draw conclusions and generalize from one’s own case. A number of parents have claimed to ﬁnd correlations between certain foods and autistic behaviour; a strict diet eliminating these foods, especially gluten and dairy products, is said to lessen or eliminate disruptive behaviours (Seroussi, 2000). While it may be that many autistic children also have food allergies, to draw conclusions from single cases or even a large number of personal testimonies is either an instance of the fallacy of improper generalization or post hoc, propter hoc. The need for scientiﬁc study of causes and correlations remains. The most widely acclaimed method of treating autistic children is the Applied Behavior Analysis (ABA) method developed by Dr. Ivor Lovaas in 1970. It is an intensive programme of discrete trial training and behaviour modiﬁcation, which involves breaking down skills into small steps and then rewarding the child as he develops the skills. Each step is repeated and reinforced many times. ABA involves one-to-one interaction with specially trained teacher-therapists and occupies most of a school day with additional at-home sessions each day with tutors or parents. The best programmes operate on a year-round schedule and include out-of-classroom instruction, as well (Egel in Powers, 2000). Lovaas claims that 47% of the children in his programme achieved “normal” status and in a follow-up study at age 11 1/2, 44% were indistinguishable from the average child (Lovaas 7, 1987; McEachim, Smith, Lovaas, 1993). On the basis of this data, the New York Department of Health recommends ABA as an important element in the treatment of autistic children. However, the Lovaas studies and results are not without their critics. Other professionals object on the grounds that they involved a very small number of children (19) and that the admission criteria Lovaas used selected for

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high-functioning autistic children and rejected those with severe retardation. More importantly, the study did not use a randomized control group, the gold standard of research design. There was a control group in the study, but subjects were assigned to groups depending on parents’ choices and availability of therapists. This may have skewed the results. Currently there are studies underway at 14 locations in the U.S. and Europe, funded by the U.S. National Institute of Mental Health, comparing 150 children being treated with ABA and the same number of children with similar symptoms being treated with some other kinds of treatment (McIntosh, 1999). When these results are in, some of the questions about choice of treatment should be easier to answer. The ABA method has been challenged on other grounds as well. In 2000 in what has come to be known as the Auton case four families who had been denied medical coverage for ABA treatment of their autistic children sued the government of British Columbia on the basis of having been denied necessary medical care. In the initial hearings, the government claimed that the ABA programmes are education, not medical treatment, and further that their effectiveness is undocumented. The parents won their case, the court ﬁnding that Early Intensive Behavioural Intervention (Lovaas’ version of ABA) is a medically necessary service, deﬁning “medically necessary” as whatever cures or ameliorates illness” and that it should be funded for children up to age 6 (Freeman, 2003). The case was then appealed to the British Columbia Court of Appeals in October 2002, which agreed with the lower courrt and extended the time of paid treatment until the physician afﬁrms that it is of no further beneﬁt to the child. The case is not over yet, for in June 2004, the case was appealed once again, this time to the Supreme Court of Canada. At this writing, no decision has been handed down. The case is a critical one in terms of ﬁnancial costs. ABA school and homebased programmes range about $45,000 to $60,000 per year per child for an undetermined number of years, depending on the child’s progress. If indeed some form of ABA becomes standard treatment based on scientifcally valid outcomes research, and if ABA is effective only with intensive, specialized one-on-one early intervention, virtually no individual family will be able to provide treatment for their children. If the ﬁnancial burden falls on society, it will be a great burden. Yet, a strong argument can be made that individuals with disabilities have a right to treatment if treatment exists and that justice in society requires providing greater resources to those who need them to lift them to a level closer to those who are not born with disabilities. Parents of autistic children are often ﬁerce advocates for their children. Yet, they are at a disadvantage in not knowing what to choose for their children until

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there is better and more complete information available about effective treatment methods.

Ethical and Unethical Modes of Treatment Behaviour Modiﬁcation While it would seem to almost everyone that interventions designed to conform an autistic child’s behaviour closer to the norm for all children are a beneﬁt to the child, even this assumption has been challenged. In the testimony in the Auton case, one woman, Michelle Dawson, herself with a childhood diagnosis of autism, argued against requiring funding for ABA. She claimed that some autistics may contribute to society without adopting “normal” behaviour and faulted the courts for not assuming that society should accommodate to autistics (Simmeron, 2004). This is in line with a familiar argument in the disability literature, that it is that society ought to change to accept individuals with differences rather than requiring those individuals to conform to society’s expectations or norms. This argument has merit in many cases, but there are three factors that count against it in relation to autism. First: individuals with autism have difﬁculty in relating to other people and their expectations, and thus they are not as likely to feel social pressure to conform as individuals with other disabilities. The second important factor is that many children with autism do not seem generally happy. The child who loses himself for hours in watching a coin spin may seem quite content, but just as often autistic children demonstrate what we can only interpret as deep frustration or anger or inner turmoil, engaging in serious tantrums many times a day every day, persistent whining or moaning, and for some, extremely serious self-inﬂicted hitting, biting, gauging, to the point of being life-threatening. It may seem acceptable to advise leaving well enough alone for a child with disabilities who ﬁnds happiness in some activities or relationships, as many Down’s Syndrome children do, but leaving the apparently miserable or self-injurious child alone does not seem justiﬁed. Thirdly, given that society is set up for the person of typical ability, it does seem to be in the child’s best interest to teach as many communication skills and other skills in daily living as he or she can manage. The greater the degree that children can understand and relate to the social world, the more opportunities that open up to them which may bring satisfaction and pleasure, for example, travel, games, sports. An argument that many people ﬁnd persuasive is that parents should make choices for children that will leave them an “open future,” that is, that will not unnecessarily close off future choices and opportunities. (Feinberg)

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If further justiﬁcation is needed, we should note that only with some behaviour modiﬁcation can an out-of-control child become controlled enough to make it possible for the family to live with and care for him or her. If a child has a right to family life, or if not a right but at least if it is a beneﬁt or in the child’s best interest, and if some sort of behaviour modiﬁcation is a necessary step to achieving this, then it does seem perfectly justiﬁed. Even if the argument from the child’s own best interest could not be made, say if he is so lacking in social awareness that he would be just as happy in another setting as he is being cared for by his family, there might be good reasons for using behaviour modiﬁcation on the basis of the family’s best interest. However difﬁcult a child’s behaviour may be, families often have very strong committment to keeping him or her at home (Greenfeld, 1978). There is increasing sentiment among theorists that ethical decisions may be made in the best interest of the family unit, even when it may not be the best interest of the individual child. “Exclusive focus on the child does not give enough weight to the child’s family with whom his interests are inextricably bound” (Ross, 1998, p. 43). One father expresses it very poignantly this way: “When do I say ‘I’ve done enough for Esther, now it’s Anna’s turn?’ ” (Gottlieb, 2002). This reasoning seems particularly appropriate for parents and siblings of autistic children, who are called on to make extraordinary efforts to maintain a good family life. Thus we may conclude that however imperfect the available treatments may be, Ms. Dawson’s testimony notwithstanding, the autistic child should not be left alone to let nature take its course. We may go so far as to say that if a family refuses all treatment for their child, that should be grounds for intervention by others. Aversive Techniques Some professionals and some parents, especially those who have children with the most severe symptoms, including seriously self-injurious behaviour, claim that only physical punishment or aversive techniques succeed in protecting the child and others (Israel; Gerhardt, et al., 1991). This gives rise to ethical questions about treatment vs. abuse and the right of autistic children to be as free of physical punishment as average children are. Aversive techniques are generally deﬁned as behaviour modiﬁcation techniques that provide negative, that is, unpleasant, stimuli to the child and may include mild spanks, ﬁnger pinches, ammonia smells, food deprivation, and even weak electrical skin shocks. Common child-rearing advice nowadays generally supports the view that positive reinforcement works better than negative and that negative reinforcement either does not work at all or if it works, it teaches the child to resolve conﬂicts with violent behaviour. Some children’s

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rights advocates argue against all physical punishment on the grounds that it is a form of abuse and wrong in itself (Turner, 2002). Many treatment regimes for autistic children do use only positive reinforcers such as enthusiastic praise or small treats such as potato chips or candy. If these reinforcers do not work and aversives do work, does a utilitarian argument justify the use of what otherwise might be considered inhumane, abusive, and unethical treatment? States that licence educational and treatment centres for children with serious behaviour disorders do pay attention to children’s rights. Some states in the U.S. prohibit the use of aversives. In those states where they are not prohibited, they require strict accounting of the incidence of physical or chemical restraints, physical isolation, and other physical controls or punishments. Schools and treatment centres have Human Rights Committees whose job it is to oversee the use of restraints and aversives. Generally such techniques are to be used only as a last resort and only to prevent harm to self or others. Typically, children have a natural desire to please parents and teachers, are able to model behaviour on peers and adults, respond to positive rewards by conforming behaviour, show empathy toward animals and other children, and at some point can understand the rationale behind behaviour requirements. By contrast, for autistic children who lack these abilities, it seems reasonable that one might need to devise alternative methods in the most severe cases. A separate question is whether or not parents, who do not come under state regulations, should be held to the same standard, i.e. should parents of out-ofcontrol children be allowed a wider range of physical punishments before being accused of child abuse? Parents, especially those not trained in special parenting skills, readily acknowledge a sense of frustration and even anger towards their children, even while intellectually acknowledging that it is not the children’s fault that they act as they do. If physical punishment results from this frustration and anger, it may make the parent feel better for the moment, but probably has no instructive value for the child. This, then, is not the use of aversive techniques in the educational sense, and the utilitarian justiﬁcation does not apply. We may conclude, then, that the use of aversive techniques at the hands of professionals and within a structured and carefully monitored treatment program may be justiﬁed, but parents’ treatment of autistic children should be limited in the same way child abuse would be limited in any other family. However, given the extreme challenges of living with a seriously out-ofcontrol child, holding parents accountable should be accompanied by policies making available not only treatment services for the child, but parent training and support and respite services for the family as well.

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Medication The controversy over the use of medication such as Ritalin to calm the behaviour of ADHD-diagnosed children is well-known. The issue is complicated in the case of autistic children because the behaviour problems are often accompanied by other problems, such as allergies, gastrointestinal disorders, and insomnia. Each of these conditions may call for medications until the child is overwhelmed by a whole barrage of drugs. Also, because until recently most new drugs were not tested on children, physicians and psychiatrists rely on “off-label” use, again introducing a kind of trial and error element about selection and dosage into what should be evidence-based medicine. While the use of medication in itself is not unethical, it is appropriate to call for caution about overprescribing and note that there is a real need for controlled studies to establish appropriate guidelines.

Medical Treatment vs. Education Apart from medication, the most common treatment for autistic children involves training in life skills: responding to others, learning to brush their hair, feed themselves, learning language or communication skills, etc. The line between medical treatment, that is, treatment for a medical condition, and education, albeit very special education, blurs. The paradigm of medical treatment is surgery to repair a defect or medication to cure an illness or to alleviate symptoms, in each case returning the patient to a normal or near-normal state. The so-called medical model attributes all illness and symptoms to physiological origins and looks to biological interventions for treatment. Even for mental illness, the role of medication is increasingly more important and talk therapy less often used. This change has been fuelled as much by insurers preferring the lower cost of drug treatment as by recent advances in medicine. For autistic children, appropriate medication is easily classiﬁed as medically necessary and insurers will pay. But beyond that, the training that has become the lifeline for many autistic children can be classiﬁed as education and thus not medically necessary. Educational services are paid for out of a different pocket, and insofar as government agencies are responsible, they tend to be less generous and more reluctant to spend for the specialized education that parents want for their children. The practical issue may boil down to this: can it be shown that the state will save money in the long run by providing the specialized treatment, considered either as medical or educational, that currently seems most promising? Few parents can afford the whole cost of specialized services, nor provide for the

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welfare of their child as he or she becomes an adult. One can speculate that the child who does not receive services as a child is more likely to require more extensive and expensive care as an adult. Adults who have learned life skills as children may thrive in group homes, even if they never progress to total selfsufﬁciency, whereas children who have not received treatment will need either intensive personal care or may be relegated to an institutional setting that may, indeed, violate their right to humane care. We need good data to make the case for the cost-savings of providing services to children at an early age, whether the services are classiﬁed as medical or educational.

Problems About Research Many of the issues about the rights of autistic children can be resolved only when the various treatment options have been tested according to the standards of evidence-based medicine. Developing a research programme to answer the unanswered questions, however, poses a whole array of ethical issues. Any medical or psychological research with child subjects presents challenges to the ethical researcher because children are presumed incapable of giving informed consent. For participation in research trials that hold promise of being of beneﬁt to the child, i.e. therapeutic research, parents may give proxy consent. The case is different with non-therapeutic research where, according to U.S. guidelines, parental consent is not sufﬁcient. One can imagine examples of non-therapeutic research: researchers whose goals are to discover genetic links to autism or, say, markers in the blood that might predict onset or severity of autistic behaviour and may help in discovering effective treatments, may well need to draw blood samples to compare those of autistic children with non-autistic control groups or may require brain scans to look for special characteristics. These research projects may be well-designed and hold promise of eventually unlocking some of the mysteries about causes and treatment, but no one expects them to be of immediate beneﬁt to the children whose blood is being sampled. Thus, much of the very important research on autism involves clearly non-therapeutic procedures. Some theorists argue that no children should ever be subjects in non-therapeutic research. They cannot give consent (Ramsey, 1970) and they cannot be said to have an obligation to participate where adults do not, so children should not be subject to involuntary altruism (Archard, 2003). Despite these objections, most government policies do allow such research with certain protections in place. One of the protections of children’s rights written into U.S. guidelines requires, in the case of non-therapeutic research, that assent be obtained

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from all minor subjects over the age of 7. This requirement, in turn, requires informing and explaining the research protocol to the child in age-appropriate language and then waiting for his or her voluntary, uncoerced agreement to participate. A second protection of child subjects allows the child to withdraw from the experiment at any time for any reason. In other words, child subjects have complete veto power over their own participation, parental permission notwithstanding, as long as the research is for future or generalizable knowledge and holds out no realistic hope of having therapeutic value for them. How do these protections apply to the autistic child? Can autistic children give valid assent? Can they understand research explanations, including the prospect of being altruistic and doing something that may beneﬁt future children? The answer has to be that some high-functioning autistic children can, but the majority, who have difﬁculty understanding abstract concepts and difﬁculty empathizing with others, will not be able to do so. Some useful research may be so non-invasive and non-threatening that researchers and Internal Review Boards (IRBs) may be willing to overlook the assent requirement. If a researcher wants to observe a child at play or take a video to document typical behaviour or collate data from interventions designed for therapeutic purposes, this would not raise an ethical red ﬂag. However, subjecting the child to additional blood drawing, while not a major intervention, well might be something the child would object to, if he could. Research concerning educational methods does not fall under these regulations. Thus, if parents or teachers try some new methods for training and educating their autistic children, there is no problem. Similarly, if they use a trial and error method to ﬁnd the right combination or dosage of medications, there is no ethical problem since the intent is to ﬁnd something that will beneﬁt that particular child. Regarding the second protection for child subjects, can an autistic child withdraw from an experiment when he or she wants to? It is problematic. For a child exhibiting oppositional behaviour or general withdrawal from social contact, how can a researcher know when she is behaving in her own usual manner and when she is trying to withdraw from the particular research protocol? The protection of allowing child subjects to withdraw appears to be inapplicable in many cases and thus the autistic child loses a right or protection that other children have. Considerations about informed consent and valid assent, then, seem to lead to the conclusion that autistic children should not be used as non-therapeutic research subjects. Without this kind of research, though, the hope for improved treatment comes to a dead end. Is there a way out? Perhaps there is. U.S. guidelines permit two exceptions to the assent requirement. One is for children who cannot give assent. Parents may consent for infants, for example,

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as long as the research poses only minimal risk or no more than minor increase over minimal risk. The second exception is for research that holds promise of yielding knowledge of “vital importance.” The question of whether or not research on causes and treatment of autism is of vital importance is easier to answer. The effect of autism on the children themselves and their families can be devastating and the increase in the population is very signiﬁcant. As this discussion has illustrated, there are many unanswered questions that need to be answered before families and professionals can be conﬁdent that autistic children are getting the most effective treatment. Thus, it does not seem to be an exaggeration to consider even nontherapeutic research to be of vital importance. In that case, parental consent is sufﬁcient for the child’s participation.

Conclusion The lack of good research stands in the way of fulﬁlling the right of autistic children to safe, effective, humane medical treatment and effective methods of education and training designed to maximize the individual child’s potential. It challenges the ethical ideal of parental informed consent and raises questions about the ethics of various treatment modalities currently in use. Beyond that, the lack of good research has implications for the limits that society, in the form of governmental or private insurers, or goverment-funded educational systems, feels justiﬁed in imposing on services for autistic children. The research question, it seems, holds the key to determining how to fulﬁll the rights of the children. There are ethical challenges concerning research design and the use of child subjects, especially in non-therapeutic protocols. But these challenges must be overcome if society is to fuﬁll its obligation to this increasing, vulnerable segment of the population.

References American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Washington, S.C.: American Psychiatric Association. Archard, David William (2003). Children, Families, and the State. Aldershot, Ashgate. Egel, Andrew (2000). “Finding the Right Early Intervention and Educational Programs.” In M. Powers, Children with Autism: A Parents’ Guide. Bethesda, MD: Woodbine House. Feinberg, Joel (1980). “The Child’s Right to an Open Future,” in W. Aiken and H. LaFollette (eds.) Whose Child? Parental Rights, Parental Authority and State Power, Totowa, NJ: Rowman and Littleﬁeld, pp. 124–53.

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Freeman, Sabrina (2003). Science for Sale in the Autism Wars. Langeley, B.C.: SKF Books. Gerhardt, P., D.L. Holmes, M. Allessandri, M. Goodman (1991). “Social Policy on the Use of Aversive Interventions: Empirical, Ethical, and Legal Considerations.” Journal of Autism and Developmental Disorders, Sept. 21 (3), pp. 265–77. Gottlieb, Roger (2002). “The Task of Embodied Love: Moral Problems in Caring for Children with Disabilities,” Hypatia, 17:30, 2002, pp. 225–236. Greenfeld, Josh (1978). A Place for Noah. New York: Holt, Rinehart and Winston. Israel, Matthew. “Follow-up Study of 31 Former Students at Judge Rotenberg Center,” unpublished: . Kotsopoulis, Sotiris (2000). “Uncertainties in aetiology and treatment of infantile autism – Assumptions and evidence,” in Medicine, Health Care and Philosophy Vol. 3, Issue 2, p. 175ff. Lovaass, I (1987). “Behavioral Treatment and Intellectual Functioning in Young Autistic Children,” Journal of Clinical and Consulting Psychology, 55, pp. 3–9. McEachim, J., Smith, T., and Lovass, O. (1993). “Long-term Outcomes for Children with Autism Who Received Early Intensive Behavioral Treatment.” American Journal of Mental Retardation: 97, pp. 359–372. McIntosh, Hugh (1999). www.apa.org/monitor/9/99. Madsen, K.M. et al. (2002). “A population-based study of Measles, Mumps, and Rubella Vaccination and Autism,” in New England Journal of Medicine, 347:1477–82, Nov. 7, 2002. Ramsey, P. (1970). The Patient as Person. New Haven, CT: Yale University Press. Ross, Lainie Friedman (1998). Children, Families, and Health Care Decision-Making, Oxford: Clarendon Press. Seroussi, Karyn (2000). Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery, New York: Simon and Shuster. Simmeron, Lisa (2004). “Summary of Auton Case” www.autismsocietycanada.ca. Turner, Susan (2002). Something to Cry About: An Argument Against Corporal Punishment of Children in Canada. Toronto: Wifrid Laurier University Press. Wakeﬁeld, Andrew (1998). “Ileal-lymphoid-nodular hyperplasia, Non-speciﬁc Colitis, and Pervasive Developmental Disorder in Children.” The Lancet, Feb. 28, 1998.

Caring for Children with Severe Disabilities: Boundaried and Relational Rights JO BRIDGEMAN Sussex Law School, University of Sussex

I have known David all his life. I know when he is happy, when he is sad or when he is in pain. I thought it was disgusting that these doctors did not take that into account. . . . Yes, David does have a different quality of life, but so does everyone. I don’t have the same quality of life as a ﬁlm star jetting round the world. David has never walked, so he doesn’t know what it’s like. Being handicapped and being in pain are different things. . . . Yes, I was angry. I was angry for David because I knew him best and I needed to stick up for him. I needed to give him a voice. (Carol Glass quoted in Day, 2004) We need to take decisions away from the side of the hospital bed. Life and death decisions are a human rights issue not just a medical issue. A fuller and more comprehensive picture will be gained in the context of the individual’s life within the family or wider community. . . . The generally accepted view that the quality of life that a disabled person leads has limited value, needs to be challenged. (Richard Parnell, Research Manager, Scope quoted on David Glass website ) Parents see 24-hour reality of a severely disabled child who has good times and bad times. Hospital staff see the child at a point in time – commonly a low point – and are less aware of the person behind the disability than the parents are. Parenting is about a relationship and the voice of those who have that relationship must be heard. (Brian McGinnis, Special Advisor, Mencap, BBC News Online, Thursday April 22nd 1999)

Introduction The problem of how to treat the terminally ill is as old as life itself. Doctors and nurses have to confront it frequently, but it is never easy. Parents and relatives have to confront it less often and that makes it all the more difﬁcult for them. Judges are occasionally faced with it when terminally ill children are wards of court. It is an awesome responsibility and only made easier for them than for parents to the extent that judges are able to approach it with greater detachment and less emotional involvement. (Re C (a minor) (wardship: medical treatment) [1989] 3 WLR 240, per Lord Donaldson MR, p. 242)

As Lord Donaldson acknowledged in Re C, decisions about the treatment of children with severe disabilities, some but not all of whom are terminally ill, Michael Freeman (Ed.), Children’s Health and Children’s Rights, 99–119. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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are extremely difﬁcult for all concerned – parents, relatives, doctors, nurses and judges – however emotionally involved. In the immediate period following the birth of a child with severe disabilities or confronted with a diagnosis of severe disability following an accident, parents will be dependant upon professionals from a range of disciplines for information, advice, guidance and support whilst they come to terms with the situation and its meaning for the future of their child and family: whilst their responsibility for making decisions about the treatment of their child commences immediately. Inevitably, some parents will ﬁnd their situation impossible to cope with and be unable to take an active part in caring for their child.1 Other parents become experts in their child’s medical condition, their caring needs and experience of life. Where the child’s condition permits them to be cared for at home parents have ongoing contact with community health services and, in times of crisis, with hospital services. The general principles of law and the principles developed in the cases concerning decisions about the treatment of children with severe disabilities set the parameters within which professionals work and the advice they give to parents who are confronted with the responsibility for a child with very special medical, nursing and caring needs. The focus of this article is the recent ECHR judgment in the case of Glass v UK (Glass v United Kingdom [2004] 1 FLR 1019) – a landmark decision for the impact of Article 8 of the European Convention on Human Rights and Fundamental Freedoms on healthcare law demonstrating the importance of rights in the protection of this particularly vulnerable group of children. The judgment of the Court is to be welcomed for the clarity it brings to the role of parents, professionals and the court in relation to the medical treatment of dependent children – that decisions are made by parents, not healthcare professionals, and in the event of a disagreement, by the court. The judgment further clariﬁes that children have the same rights in relation to healthcare decision-making as those enjoyed by adults; that is, the right to privacy giving protection from non-consensual interference with the body, exercised during childhood on their behalf by their parents. However, this conception of rights, centred upon respect for the autonomy and self-determination of the individual, is a narrow conception which fails to engage with other rights, such as those arising from relationships (Kiss, 1997, p. 5). That is, a conception of rights based upon individualism, separation and non-interference rather than one which ‘creates, fosters and protects valued relationships’ (Minow and Lyndon Shanley, 1997, p. 95). What remains left out of the account is an appreciation of the child as an individual situated within a relationship with a mother who cared and her view of her child’s best interests, his quality of life, gained as she provided 24 hour care through ‘good times and bad times’. The ECHR judgment in Glass v UK prompts consideration of the parameters, set by English law, within which professionals work and the role of parents with the responsibility for a child

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with severe disabilities. As occurred in the case of David Glass, the law has the potential to create conﬂict between professionals and parents when it should create a framework which supports and encourages them to work together, each showing due respect for the expertise of the other, in the joint enterprise of caring for the child. This is particularly important given that the vast majority of decisions about children with severe disabilities are made in the wards, not in the courtroom. Professional understanding of what the law expects and permits of them is thus central to the future care of children with severe disabilities.

Children with Severe Disabilities My concern in this article is the care of children with severe disabilities. That the approach which the courts take in making decisions about children with severe disabilities was ﬁrst addressed in a case concerning a baby with Down’s Syndrome serves to demonstrate how our understandings of ’severe disability’ are historically speciﬁc (and, it should also be noted, culturally and socially speciﬁc) (Asch, 1998). In 1989, the Court of Appeal gave consent to surgery to remove a blockage in her intestine in the absence of evidence that baby Alexandra’s life was ‘demonstrably going to be so awful that in effect the child must be condemned to die’, rather that ‘the life of this child is still so imponderable that it would be wrong for her to be condemned to die.’2 Today, Down’s Syndrome is recognised as a chromosomal disorder causing some physical abnormalities and learning difﬁculties the extent of which cannot be determined at birth and, as with the development of any child, at least in part dependant upon the support and opportunities provided (Down’s Syndrome Association, ). Current medical and social understanding would demand the conclusion that life with Down’s Syndrome is not ’so intolerable’ that consent should be withheld for ordinary treatment (Campbell, 1989). Neither would good medical practice support the provision of ‘nursing care only’ and administration of sedatives to a baby born with Down’s Syndrome as in R v Arthur.3 Although there is evidence in the intervening period of, if not discriminatory, ‘less favoured’, treatment of children with Down’s Syndrome whose parents were denied details of all the treatment options for their heart conditions (Kmietowicz, 2001). The children whose treatment and lives are under consideration include those born with congenital disabilities or with disabilities resulting from prematurity,4 oxygen deprivation at birth or resulting from an accident. Advances in medical science and technology make possible the survival of babies for much longer with much more serious problems than before, raising legal and ethical issues about the provision of medical treatment and care and social issues about the

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responsibilities of society to vulnerable, dependant children and those who take care of them. Whilst parents of children with severe disabilities may become very skilled themselves in meeting the medical and nursing needs of their child, the complex needs of their child leaves parents dependant upon professionals to provide expert help – although they may not always agree with the judgement of the professional upon whom they rely (Feder, 2002). Caring for children is demanding work. Parents caring for a child with disabilities do so with either the knowledge of their shortened life expectancy and extended dependency or the additional concern about who will care if their dependant child outlives them (Davison, 1995). Securing what their child needs may involve careful negotiation with service providers (Read, 2000). Although services may be unavailable, inadequate or unaffordable placing enormous demands – practical, emotional and ﬁnancial – upon the family (Centre for Policy Studies, 2004). Research by Mencap of parents of children with profound and multiple learning disabilities found there to be a chasm between the services which were needed and those which were available. Of the 76 families interviewed, 48% received no support from outside the family and 78% either no support or less than 2 hours support a day although 60% were providing basic care or educational/ therapeutic care for in excess of 18 hours a day, leaving them with six hours of, frequently disturbed, sleep (Mencap, 2001). The story of David Glass is a story of a loving mother, a supportive family and the battles which they had to ﬁght on behalf of a child with severe disabilities. David was born in 1986, a fourth child to his mother, Carol Glass. David has severe physical and mental disabilities (including cerebral palsy, hydrocephalus, epilepsy, curvature of the spine and a dislocated hip, visual impairment and limited cognitive function) and is cared for at home by his mother with the help of his sisters and aunts. At the age of 12, David suffered complications following a tonsillectomy causing scepticaemia and recurrent respiratory tract infections. After a number of admissions to hospital, his condition had deteriorated to the point where doctors treating him at St Mary’s Hospital in Portsmouth believed he was dying, that it was not appropriate to provide intensive care and that morphine should be administered to alleviate pain and suffering. His mother, Carol Glass, disagreed with the assessment that he was dying and her solicitor wrote a letter to the hospital expressing her view that morphine should not be administered to David. David was re-admitted the following month to the care of a different consultant. Diamorphine was administered despite his mother’s refusal of consent and a Do Not Resuscitate Order (DNR) put on his notes without her knowledge. In the opinion of the doctors, David became more restful; in his mother’s, the diamorphine depressed his breathing. The doctors agreed to reduce the diamorphine on condition that

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there were no attempts at resuscitation. Family members, however, proceeded to resuscitate him through singing, talking and blowing raspberries. As doctors intervened in an attempt to stop them, a ﬁght broke out between family members and the doctors whilst his mother resuscitated him. David’s condition improved and he was discharged later that night. The Director of the Trust wrote to his mother informing her that the hospital would only be able to provide palliative care for David in the future and if she wished for more active care David should be taken to hospital in Southampton. His mother believed that the medical assessment/treatment was a judgement about the quality of David’s life – that the doctors thought he had a low quality of life and consequently was not worth continued treatment. An assessment she unreservedly rejected.5 These events led to an array of proceedings brought by both David’s mother and the hospital. Carol Glass sought judicial review of the decision of the hospital (R v Portsmouth Hospitals NHS Trust, ex parte Glass, 22 April 1999, Scott Baker J, ). Scott Baker J held that the decision was not susceptible to review as it related to past events which would not arise again, it would be difﬁcult to frame a declaration which did not limit doctors in providing appropriate treatment for any future situation and if there was a disagreement between doctors and his mother in the future it would be determined according to the best interests of the child. Permission to appeal was refused, Lord Woolf MR emphasising that where agreement between doctors and parents is not possible the court should decide in the best interests of the child (R v Portsmouth Hospitals NHS Trust, ex parte Glass [1999] 2 FLR 905). The actions of the doctors were subject to investigation by the General Medical Council which concluded that they amounted to neither serious professional misconduct nor seriously deﬁcient performance. Carol Glass complained to the police but the Crown Prosecution Service concluded that there was insufﬁcient evidence to bring criminal proceedings against the doctors and that it was inadvisable to prosecute the doctors for attempted murder, conspiracy to murder or offences contrary to the Offences Against the Person Act 1861. Whilst the actions of the doctors thus appeared to have been vindicated, the family members – two aunts and an uncle – who had been involved in the ﬁght were prosecuted and convicted of offences against the person. Having failed to secure consideration of the merits of her complaints in English Law, Carol Glass took her case to the European Court of Human Rights which found there to have been a breach of David’s Article 8 rights. One of the extremely worrying aspects of the facts surrounding this case was the certainty of the treating doctors that their conduct had behind it the full force of the law permitting them to decide about David’s medical treatment overriding the wishes (refusal of consent) of his mother who had experience and knowledge of her son’s condition gained through her attentiveness to him

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as she cared for him. The ECHR judgment details extracts from David’s medical notes which testify to the conﬁdence of the doctors in their ability to treat according to their assessment of his best interests. Dr Walker recorded, I have told [Carol Glass] that we can give morphine to alleviate distress even vs. their wishes (and we can – I am assured by the Ofﬁcial Solicitor that no judge has ever overturned a doctors’ decision to withdraw treatment/alleviate symptoms) but we wouldn’t without telling them. (Glass v United Kingdom [2004] 1 FLR 1019, para. 14)

Dr Hallett wrote in David’s notes: ‘In the event of total disagreement we should be obliged to go to the Courts to provide support for decision [to use morphine]. Mother says she does not understand this’ (Glass v United Kingdom [2004] 1 FLR 1019, para. 16, emphasis added.) In other words, that court approval to act against his mother’s wishes was necessary but would be forthcoming. The meeting between family members and the Chief Executive at which the family were told that diamorphine would be administered was conducted in the presence of police. When Carol Glass then asserted that if the hospital was correct and David was dying, she wished to take him home: A police ofﬁcer in attendance advised her that if she attempted to remove him, she would be arrested. The hospital also indicated that unless the family members present allowed the doctors to commence diamorphine the police would remove them also. (Glass v United Kingdom [2004] 1 FLR 1019, para. 24).

The European Court of Human Rights commented, with implicit criticism, upon the use of the police to provide the doctors with ‘back up’ in putting their decision about treatment into effect: [T]he doctors and ofﬁcials used the limited time available to them in order to try to impose their views on [Carol Glass]. It [the European Court of Human Rights] observes in this connection that the Trust was able to secure the presence of a police ofﬁcer to oversee the negotiations with the second applicant but, surprisingly, did not give consideration to making a High Court application even though “the best interests procedure can be involved at short notice” (see the decision of Mr Justice Scott Baker in the High Court proceedings). (Glass v United Kingdom [2004] 1 FLR 1019, para. 81)

There is no question that the doctors were acting in what they genuinely believed were David’s best interests. However, in their judgements about his care and medical treatment they failed to respect his mother’s knowledge of her son’s condition, quality of life and ability to withstand treatment gained in twelve years of taking care of him. Night and Day. Good days and bad. Despite having taken responsibility for caring for her son, in her words ‘knowing him best’ as a child beyond his disability, Carol Glass’s views were ignored and steps taken to treat him as a dying patient. The doctors’ conﬁdence that the law

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permitted them to treat David according to their judgement ignoring his mother’s opinion led to conﬂict between them, situated on opposing sides in the judgment of his best interests. This interpretation of the law created a situation where those caring for David became adversaries in their caring, losing sight of their shared endeavour. Before addressing the response of the ECHR, it is necessary to explore the question whether the doctors were properly advised as to their legal position.

The Principles of Law The best interests principle is employed for determination of treatment decisions across a range of situations including the medical treatment of incompetent adults (F v West Berkshire Health Authority [1990] 2 AC 1), sterilisation of adults with learning difﬁculties (Re SL (adult patient: medical treatment) [2000] 2 FLR 452) and decisions at the end of life (Airedale NHS Trust v Bland [1993] AC 789). Assessment of the best interests of the child remains a central determining principle in decisions about the treatment, non-treatment and withdrawal of treatment from children with severe disabilities. In Re J Lord Donaldson MR referring back to the case of baby Alexandra, Re B (above), declined to treat ‘Templeman LJ’s use of the words “demonstrably so awful” or Dunn LJ’s use of the word “intolerable” as providing a quasi-statutory yardstick’ whilst accepting that the court was required to perform a balancing exercise (Re J (A Minor) (Wardship: Medical Treatment) [1991] 2 WLR 140, per Lord Donaldson MR, p. 149). From Lord Donaldson MR’s judgment we can derive the following principles: 1. ‘the starting point is not what might have been, but what is’; 2. there is a presumption in favour of a course of action which will prolong life; 3. it is necessary to consider the pain and suffering and quality of life if life is prolonged and the pain and suffering caused by the treatment; 4. from the point of view of patient.6 In the same case, Taylor LJ repeated Dunn LJ’s use of ‘intolerability’ as a guiding principle. Life, from the perspective of the child, must be intolerable before treatment is withheld: I consider that the correct approach is for the court to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afﬂicted as to be intolerable to that child. I say ‘to that child’ because the test should not be whether the life would be intolerable to the decider. The test must be whether the child in question, if capable of exercising sound judgment, would consider the life intolerable. . . . It takes

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account of the strong instinct to preserve one’s life even in circumstances which an outsider, not himself at risk of death, might consider unacceptable. The circumstances to be considered would, in appropriate cases, include the degree of existing disability and any additional suffering or aggravation of the disability which the treatment itself would superimpose. In an accident case, as opposed to one involving disablement from birth, the child’s pre-accident quality of life and its perception of what has been lost may also be factors relevant to whether the residual life would be intolerable to that child. (Re J (A Minor) (Wardship: Medical Treatment) [1991] 2 WLR 140, per Taylor LJ, p. 158)

Thus, a decision about the treatment, non-treatment or withholding of treatment from a child with severe disabilities requires assessment of the quality of life of the child, or in Taylor LJ’s judgment ‘whether life would be intolerable’, from the perspective of the child. However, the age or disabilities of the child, or both, will mean that the child is unable to provide an account of the quality or tolerability of his or her life as experienced. Consequently, the child is dependent upon those caring for him or her to make judgements on their behalf. This demands consideration of whether it is ethically acceptable for one to judge the quality of life of another; to decide whether from the other’s perspective life is intolerable.

Quality of Life In the conjoined twins case, Re A (Re A (children) (conjoined twins: surgical separation) [2001] 2 WLR 480), Ward LJ considered the question whether it was ethically and legally appropriate to assess the quality of life of another. Looking back to previous cases, Ward LJ considered that the court in Re J (above) and himself in Re C (Re C (a minor) (wardship: medical treatment) [1989] 3 WLR 240) had been engaged in a process of assessing the worthwhileness of treatment because respect for the sanctity of life permits treatment to be withdrawn or withheld only where it, the treatment, is not worthwhile. In reaching this conclusion about the previous cases and the approach to be adopted in the case before him, Ward LJ adopted John Keown’s analysis of vitalism, sanctity of life and quality of life in his article which responded to the case of Tony Bland (Airedale NHS Trust v Bland [1993] AC 789), ‘Restoring Intellectual Shape to the Law After Bland’ (Keown, 1997). In this article, John Keown argued that respect for the sanctity of life prohibits the intentional ending of life by either act or omission whilst permitting both the administration of treatment to relieve pain which has the effect of shortening life (double effect) and withholding treatment because it is not worthwhile ‘either because it offers no reasonable hope of beneﬁt or because, even though it does, the expected beneﬁt would be outweighed by burdens which the treatment would impose’ (Keown, 1997, p. 485). He argued that it is ethically and legally

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acceptable to give consideration to the patient’s condition in order to assess the worthwhileness of treatment. But that the courts should not, in his view, make quality of life judgements which involve assessment of the ‘worthwhileness of the patient’s life’ (Keown, 1997, pp. 486–7). Applying this in Re A, Ward LJ had ‘regard to the actual condition of each twin and hence the actual balance sheet of advantage and disadvantage which ﬂows from the performance or the non-performance of the proposed treatment. Here it is legitimate, as John Keown demonstrates, and as the cases show, to bear in mind the actual quality of life each child enjoys and may be able to enjoy.’ (Re A (children) (conjoined twins: surgical separation) [2001] 2 WLR 480, para. 10). Whereas, quoting Keown, ‘[f]rom the standpoint of the sanctity doctrine, a central objection to the Quality of life philosophy is that it denies the ineliminable value of each patient and engages in discriminatory judgements, posited on fundamentally arbitrary criteria such as physical or mental disability, about whose lives are “worthwhile” and whose are not. The arbitrariness is highlighted when it is asked which disabilities, and to which degree, are supposed to make life not worth living?’ (Re A (children) (conjoined twins: surgical separation) [2001] 2 WLR 480, para 7.4 quoting Keown, 1997, p. 487). John Keown’s analysis of vitalism, sanctity and quality of life rightly highlights the importance of not making arbitrary or discriminatory judgements in making decisions about treatment, non-treatment or withholding of treatment. However, as recognised in the quotation from Ward LJ’s judgment above, the sanctity of life doctrine does involve assessment of quality of life as an inherent part of assessment of the worthwhileness of treatment. As John Harris argued, in his response to the conjoined twins case, this is a ‘distinction without a difference’. Medical treatment is not an end in itself and decisions about treatment are dependant upon the contribution it will make to the quality of life (Harris, 2001). But, with a focus upon the beneﬁts and burdens of medical treatment, primacy is given, as the decisions in the cases show, to medical opinion. Decisions about treatment, non-treatment or withdrawal of treatment are not just decisions about treatment, they are decisions about life. Judgements about the quality of life of the child cannot be avoided but, as Keown rightly points out, these must be neither prejudiced nor capricious. They must be arrived at with careful consideration of the quality or tolerability of life of the individual child from the perspective of the child. Our lives have meaning to us through interaction, our relationships, our experiences as well as the ‘ineliminable value’ of each individual self. Decisions should not be based solely upon an objective assessment of the beneﬁts and burdens of the medical treatment by detached professionals who may only have intermittent responsibility for the child dependant upon their care in episodes of crisis but must be informed by accounts of those with knowledge of the individual child dependant upon them for their daily care (Newson, 1978). As Hedley J recognised

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in his judgment about the future treatment and care of Charlotte Wyatt, ‘[t]hose who have cared for a disabled child often have different perceptions of “quality of life” and “intolerability” to those who have not’ (Portsmouth NHS Trust v Wyatt & Others [2004] EWHC 2247, para. 30). The particular input from those who have taken the responsibility of caring is to see the child not as a medical problem, as a disability which cannot be remedied, but to appreciate the child as a person beyond the disability providing a very different understanding of their condition and the quality of their life to that of the medical professionals who treat them in times of crisis. The response of Carol Glass to the treatment of her son shows the love she has for him, the appreciation she has for him as a person and her understanding of the value of his life to him gained through her experiences of taking care of him.

Tolerable Lives and Professional Judgement This understanding, that parents who have experience of caring for a child with severe disabilities may have a very different perspective of the child’s quality or tolerability of life from others, including as Adrienne Asch identiﬁes healthcare professionals, highlights the importance of parents and professionals working together to decide what is best for the child (Asch, 1998). In Re J, Lord Donaldson MR characterised the relationship between parents and professionals as a ‘partnership’ (Re J (a minor) (wardship: medical treatment) [1991] 2 WLR 140, per Lord Donaldson MR, p. 143). However, Lord Donaldson MR appeared to consider the doctors to be the dominant partners in the relationship who must decide in consultation with the parents and, if possible, agree with them on the appropriate course of action taking time to explain to the parents the treatment options available. Two years later in Re J, Lord Donaldson MR was unable to imagine any situation in which the court would require a doctor to treat contrary to their clinical opinion (Re J (A Minor) (Child in Care: Medical Treatment) [1992] 3 WLR 507, per Lord Donaldson MR, p. 516). This view was re-iterated in a case in 1996 in which the doctors and parents were agreed that the best interests of C were that artiﬁcial ventilation be withdrawn, sedation administered and loving care provided for what remained of her life. In this case, Sir Stephen Brown P went as far as to say that decisions about treatment were taken by doctors and the purpose of reference to court was to ‘share responsibility’: The courts do not instruct doctors how they should perform their clinical and professional duties. However, the courts are ready to assist with the taking of responsibility in cases of grave anxiety such as this case. (In re C (a Baby) [1996] 2 FLR 43)

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In many of the few reported cases which preceded the treatment of David Glass, this was the function of recourse to the court: sharing responsibility by seeking an independent adjudication upon the course of action considered to be in the best interests of the child by those involved in his or her care. The position noted by Dr Walker in 1998, that ‘no judge had ever overturned a doctor’s decision to withdraw treatment/alleviate symptoms’ was consistent with the views expressed in those cases but it was a partial account of the law which failed to address the differences between those cases and David Glass’s situation. It could have been noted that there were no reported cases in which a parent who had been the primary care provider of the child was so adamant that the judgement of the doctors about their child’s condition and quality of life was wrong. Acting upon the advice they had been given, the doctors failed to undertake a thorough assessment of the quality or tolerability of life from the perspective of the child and to share with his mother responsibility for the decision about David’s treatment. However, a case soon followed which supported the interpretation of the law upon which Dr Walker relied. This was despite the caveats which by this time had been added by Lord Woolf when refusing permission to appeal in David’s judicial review case. In his judgment, Lord Woolf accepted the principle of non-interference by the courts in areas of clinical judgment in the treatment of patients where this can be avoided; and the refusal of the courts to dictate appropriate treatment to a medical practitioner subject to the power of the court to decide in the child’s best interests taking fully into account the attitude of medical practitioners (R v Portsmouth Hospitals NHS Trust, ex parte Glass [1999] 2 FLR 905). In July 2000, the court was asked to decide about the treatment of ID whose parents had a very different understanding of his quality of life from that of the doctors (A National Health Service Trust v D [2000] 2 FLR 677). At the time of the application to the court, ID was 19 months old. He had been born prematurely, had neurological handicaps and severe developmental delay, problems with a number of organs in addition to severe, chronic, irreversible and worsening lung disease. From the age of 8 months, ID had been cared for at home by his parents with the support of community services and hospital visits to deal with particular problems. His parents had worked closely with the health professionals identifying when changes in his condition meant that professional help was required. A fever had led to acute chronic respiratory and cardiac failure and the consultant paediatrician thought that ID was dying and therefore should not be admitted to paediatric intensive care. Attempts were made to transfer ID to paediatric intensive care (the hospital he was in did not have a unit) but consultants in the three hospitals contacted agreed that he was not suitable for intensive care. Yet, on that occasion intensive care proved not to be necessary, ID was treated successfully with drugs and he returned home. The application was for a declaration that in the event

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of a future respiratory or cardiac failure or arrest it would be lawful to withhold resuscitation and to provide palliative care only. ID was terminally ill and the issue was whether he had reached the point where further intervention to save his life in the event of an arrest was no longer in his best interests. The paediatricians provided the court with their clinical assessment of ID’s worsening lung disease but told the court that they had not seen the improvements in his development noted by his parents. In his report Dr P, consultant in paediatric intensive care, ‘stated that the family’s description of I’s development appears at odds with what has been documented by the medical staff, saying that he could ﬁnd no record of I having head control, visual ﬁxation and following, sitting, speaking words or reaching for an object’ (A National Health Service Trust v D [2000] 2 FLR 677, p. 683). Dr P wrote his report with the beneﬁt of the hospital records and clinical notes and a clinical examination of ID conducted four days after he was admitted to hospital with a fever. In contrast the evidence of the paediatric therapist, occupational therapist, home visitor, lead nurse in neo-natal home care and speech and language therapist supported his parents’ view that he had made progress. The speech and language therapist ‘spoke of I becoming more alert and responsive to the environment around him and that he greeted familiar people with recognition. He follows with his eyes people and toys which interest him. He is beginning to show signs of some vocabulary with a hand and arm movement to indicate “bye bye”. He has a delightful smile and can indicate pleasure and displeasure.’ (A National Health Service Trust v D [2000] 2 FLR 677, p. 684). His parents considered the application premature pointing to his current health and the developmental progress which they considered he had made. They also emphasised that ID was able to recognise them, he demonstrated his pleasure at being with them and there was a bond between them. They considered that the doctors were not, as Re J required, assessing ID’s quality of life as he experienced it but from a medical perspective drawing on their own non-disabled, adult experience. His parents accepted that in the event of readmission (at the time of the application he had recovered from the crisis and they were caring for him at home) they would consider all the circumstances including the doctors’ opinions about the advisability of ventilation. Likewise, the paediatrician had told the court that she would assess ID’s condition in the event of admission to determine whether ventilation was appropriate. His parents had taken responsibility for the care of their son. Despite their understanding of his quality of life gained through their experiences of caring for him and supported by the evidence of other professionals, the decision about his future treatment and his life were handed over to the clinicians who would care for him when the next crisis arose. The declaration handed decisions about ID’s future treatment to the paediatrician permitting treatment to be withheld according to her clinical judgement and contrary to his parents’ caring judgement.

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Where parents provide long-term care to their child with the assistance of professionals at moments of crisis, their experiences of their child as an individual gained through the care they give uniquely places them to provide insights into the tolerability of life as experienced by their child. Their daily care provides them with an understanding of their child’s quality of life which contrasts with the perception of the professionals who focus upon the disability of the child whom they treat in times of crisis.7 As Carol Glass said: What the doctor couldn’t understand was that David is not a handicapped child. He is a child with handicaps. It got to the stage where it was out of my hands and the doctors seemed to think his life was not worth saving. But I knew David, and I knew he wasn’t dying. (Carol Glass quoted in Day, 2004)

This knowledge, experience and attentiveness may lead parents to conclude that their child’s life is intolerable to them as did the parents of Thomas Creedon. Born with brain damage, Thomas was blind, deaf, had cerebral palsy and epilepsy. His mother, Fiona, described her ‘immense despair’ as a parent caring for her son and consequently having to watch him suffer as he lived ‘the most awful existence imaginable’ (Fiona Creedon quoted in Toolis, 1996). Failure on the part of professionals or judges to take proper account of their views is to ignore the enormous contribution to the life of their child through the care they give and the knowledge they have gained of their child as an individual. Central to the case of Glass v UK was the question where responsibility lies for decisions about the treatment of young children.

Rights of Children with Severe Disabilities The Human Rights Act 1998 has had a limited impact upon the law regulating the provision of treatment for physical illness in England and Wales. That the ﬁrst challenge to English healthcare law after the Human Rights Act 1998 came into force in October 2000 was in relation to death – and the speciﬁc question as to whether the law relating to the withdrawal of treatment from patients in a persistent vegetative state was compatible with the Human Rights Act – was no surprise (NHS Trust A v M; NHS Trust B v H [2001] 2 WLR 942). Further consideration has followed in matters of death in the well-known case of Dianne Pretty (R (on the application of Pretty) v DPP [2001] 3 WLR 1598; Pretty v United Kingdom [2002] FLR 45) and issues surrounding the creation of life (Leeds Teaching Hospital NHS Trust v A and others [2003] 1 FLR 1091).8 All with very little disruption to existing principles of law. David and Carol Glass alleged that the actions of the hospital amounted to a breach of Articles 2 (right to life), 6 (right of access to court), 8 (private and family life), 13 (right to effective remedy), and 14 (not to be discriminated against in the

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enjoyment of Convention rights) of the European Convention on Human Rights and Fundamental Freedoms. The complaint that the actions of the hospital amounted to a breach of their Article 8 rights was held admissible, with the remainder rejected as manifestly unfounded (ECHR, Decision as to the Admissibility of Application no. 61827/00 by David and Carol Glass against the United Kingdom, 18 March 2003). In Pretty the ECHR had stated that ‘private life’ is a ‘broad term not susceptible to exhaustive deﬁnition’ including self-determination as ‘the notion of personal autonomy is an important principle underlying the interpretation of its guarantees’ (Pretty v United Kingdom [2002] FLR 45, para. 61). In Glass v UK, the European Court of Human Rights held that the administration of diamorphine to David against the continued opposition of his mother (as his proxy) amounted to an interference with his right to respect for his private life9 and speciﬁcally his right to physical integrity (Glass v United Kingdom [2004] 1 FLR 1019, para. 70).10 Administering diamorphine against his mother’s wishes without seeking consent from the court was not necessary in a democratic society and amounted to a breach of David’s Article 8 right. The ECHR noted that the doctors had recorded in their notes previously that his mother was opposed to the administration of morphine and that recourse to the courts might be necessary. Their failure to do so contributed to their perception that they were, in October, faced with an emergency. Even so, an application to court could have been made when consent to administration of diamorphine was refused. Instead, the doctors proceeded to treat according to their judgement overriding that of his mother (Glass v United Kingdom [2004] 1 FLR 1019, paras. 80–83). In their failure to respect the refusal of consent of David’s mother as his legal proxy (or seek consent from the court), the actions of the hospital staff amounted to a breach of his Article 8 rights. Consequently, the view of the ECHR was that English law which places with parents the responsibility for making decisions about the healthcare of their child, with involvement of the court in cases of disagreement, is compatible with the Convention. To the extent that the doctors felt that, upon the advice they had been given, they were able to proceed in the face of his mother’s refusal, without any reference to the court, any misunderstanding about English Law has been clariﬁed. However, in reaching this conclusion the ECHR adopted an atomistic concept of rights affording the bodily boundaries of the separate, autonomous individual protection from non-consensual interference. As a child, David’s personal integrity was protected through his mother in whom parental responsibility was vested. This conclusion is clearly important for extending to children – to vulnerable, dependant children – the same protection from harm and abuse in the form of non-consensual treatment as is enjoyed by adults (Kiss, 1997, p. 7). But this is a narrow conception of rights which fails to reﬂect the

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complex reality of the inevitable dependencies involved: the dependency of a child with severe disabilities upon his or her parents, parental dependency upon healthcare professionals and the dependency of the state upon the care provided by parents to their child. Whilst it does amount to a recognition of a dependant child as a rights bearing individual with interests worthy of protection and the responsibility of parent for child, it leaves out of consideration his mother’s love, care and connection and the knowledge of his quality of life gained as she cared for him. Martha Minow and Mary Lyndon Shanley argue that a relational concept of rights would embrace the individual as both separate and as situated within a web of relationships of care, attachments and interdependency and understand the family as a unit determined both by the individuals of which it is comprised and by the existing social, political and historical context (Minow and Shanley, 1997, pp. 100–101). This conceptualisation of rights enables us to understand children as both individuals with rights to be protected and as dependant upon the love and care of others. Furthermore, a relational concept of rights would embrace the realities of caring for children with severe disabilities and a wider range of factors relevant to their best interests. Children, including those with severe disabilities such as David Glass, are entrusted to the care of their parents with the greatest responsibility often falling, as with Carol Glass, upon their mothers with support from their families and (some, often minimal) support from the state. That responsibility and the knowledge, experience and appreciation of the individual which goes with it needs to be recognised if the rights of the child cared for are to be given proper respect. A relational concept of rights would focus upon providing support for and fostering relationships amongst those involved in caring for children. Further, a relational concept of rights would confront the way in which attitudes, the social environment and public policy impact upon the lived reality of life with disability exposing their hitherto hidden impact (Asch, 1998, p. 78). Whilst a boundaried conception of rights protecting from non-interference led to the conclusion that David’s Article 8 rights had been interfered with and hence it was not necessary to address whether this mother’s rights had likewise, a relational concept of rights demands consideration of the rights of family members caring for and taking care of the child. A failure to address whether Carol Glass’s right to family life was interfered with by the actions of the hospital which dismissed her views and excluded her from decisions about the care of her child is a further and compounding failure to recognise her responsibility of caring. The consequence is that the ECHR requires English Courts to respect the negative right of protecting the boundaries of children’s bodies from interference and not the positive right arising from relationships of love, care and responsibility integral to the quality of their lives.

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Responsible and Caring Decision-Making In a short, separate opinion Judge Casadevall noted that time appeared to have vindicated Carol Glass’s objection to the medical assessment: ‘Beyond any speculation as to what would have been the outcome of an application to the High Court for authorisation to pursue the treatment proposed by the doctors . . ., the facts have shown – nearly six years later and to date – that, in the particular circumstances of the present case, maternal instinct has had more weight than medical opinion.’ (Glass v United Kingdom [2004] 1 FLR 1019, separate opinion, Judge Casadevall, para. 2). David’s mother had a clear view, from her experience of caring for him 24 hours a day since birth that he had a quality of life which justiﬁed treatment. Likewise, baby ID’s mother had a very different understanding of the quality of his life as he experienced it than did the doctors who provided medical care in moments of crisis. Whilst Carol Glass and the parents of ID were of the opinion that their child’s experience of life was of value to them, parents who take care of their child will not always press for treatment to continue. As noted above, the parents of Thomas Creedon thought that their son’s life was intolerable to him. Parents have reached the decision, because they care, that their child should receive no further treatment. Other parents will not be so certain about the best interests of their child: the mother in Re C could not cope ‘with the present dilemma’;11 Baby J’s parents were described by Lord Donaldson MR as being in an ‘agonising dilemma’;12 in the next case, Baby J’s mother supported the view of the local authority that ventilation should be provided whereas his father did not know what was best for their son.13 If weight is placed upon the experience of those who care, what does this mean for the child whose parents are unable to cope with being actively involved in caring for their child or the child whose condition is so severe that the parents are unable to do much for him or her?14 Inevitably dependant all young children, and more so when they have severe disabilities, have someone caring for them and someone with responsibility for making decisions about their care. Careful decision-making about whether the child’s quality of life is tolerable to them will proceed with recognition of the child as a individual, attentiveness to them and responsiveness to their needs. As Hedley J stated in his judgment about the future treatment and care of Charlotte Wyatt he had ’seen not just a physical being but a body, mind and spirit expressed in a human personality of unique worth.’ (Portsmouth NHS Trust v Wyatt & Others [2004] EWHC 2247, para. 39). The paediatrician who reported to the court in Re C (Re C (a minor) (wardship: medical treatment) [1989] 3 WLR 240) and whose report was given effect to by the order of the court appreciated that judgements about the best interests of the child and assessment of the quality of her life had to involve the insights of those who cared for her. C, a baby girl, at time of the application 16 weeks old had been born prematurely

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with congenital hydrocephalus and poorly formed brain structure. She had already undergone an operation to insert a shunt to prevent the build up of ﬂuid and the court had to decide upon future treatment. The paediatrician’s report noted that despite ‘receiving outstandingly devoted care’, C appeared unhappy and unless administered with a sedative cried in what appeared to be pain. C lay quietly until handled when she responded with an irritated cry which could sometimes be quietened by stroking her face. In his assessment, C was blind and probably deaf and, because she had made no progress despite the high standard of care, her prognosis appeared ‘hopeless’. However, in making any decisions about her future medical treatment and care ‘the opinions of the local nurses and carers should be taken into account for they know her well, show great love for her, and have a feeling for her needs that an outsider cannot have.’ (Re C (a minor) (wardship: medical treatment) [1989] 3 WLR 240, p. 245). This paediatrician recognised that the decision whether the life of a child with severe disabilities is tolerable cannot be based upon medical assessment alone but must involve the knowledge of those who take care of and care for the child attentive to his or her needs, coping abilities and happiness. An atomistic approach to rights gives protection to the child’s body from non-consensual interference but in entrusting decisions to the child’s ‘legal proxy’ makes no enquiries into the quality of the caring relationship. A relational concept of rights would involve a more complex process seeking not only to protect the individual but also examining the caring relationships and the caring arrangements. This would involve recognition of the varied circumstances in which children with disabilities are cared for and confront the impact of the care provided upon their quality of life. There would also have to be acknowledgment of the impact of attitudes, public policy and social provision upon the quality of the child’s life in responding to the question whether society is meeting its responsibilities to children with severe disabilities.

Individuals in Caring Relationships The ECHR judgment in Glass v UK provides an important acknowledgement that children with severe disabilities are individuals with rights which must be respected although it approached the rights of the child who lacked the competence to make decisions about medical treatment through an atomistic model of rights protective of the body of the separate autonomous individual from non-consensual interference. Affording the same rights to children as extended to adults, something which English Law can stand accused of having failed to do on an issue earlier addressed by the ECHR, the smacking of children.15 In her response to the ECHR judgment, Barbara Hewson questioned whether a court asked to consent to administration of diamorphine or give an order to

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continue life saving treatment, would favour a mother’s view over the doctors’ (Hewson, 2004). Decisions of English courts since have continued to demonstrate a tendency to be convinced by the medical evidence in preference to parental opinion (Portsmouth NHS Trust v Wyatt & Others [2004] EWHC 2247; Luke Winston-Jones, October 2004 (unreported)). A linear model of parental responsibility for the child replaced with judicial responsibility for the child in the event of a disagreement fails to acknowledge the web of relationships in which the child is situated and the importance of healthcare professionals and parents working together in caring for and making decisions about the care of the child. A relational concept of rights provides a richer conceptualisation of rights addressing not only the minimum protections extended to children but further how we – parents, professionals and society – best meet our caring responsibilities to children. It requires understanding of the child as both an individual and as situated within a web of relationships such that the insights, knowledge and experiences of both parent and professional are valued in reaching decisions about care. Furthermore, it underscores the value of the contribution of both parties in the partnership informing a judgment about the best interests and quality of life of the child from the child’s point of view: the detached, objective medical expertise of the professionals and the emotionally attached, partial, personal experience of parents. An appreciation that doctors and parents are not on opposing sides rather they have different perspectives on the best interests of the child both of which are necessary for a proper determination requires them to work together to achieve a better understanding of their respective positions. It appreciates the importance of the family, or those caring for the child, to the child’s quality of life, lived in relations with others and not in isolation. And demands consideration of the context of caring to the quality of life of the child, recognising the contribution of those who take the responsibility of caring and the responsibility of the state to vulnerable, dependant children.

Notes Templeman LJ referred to the ‘shock’ of the ‘caring’ parents in Re B upon discovering that their child had Down’s Syndrome such that with ‘great sorrow’ they had refused their consent to the intestinal surgery in the ‘genuine belie[f ]’ that it was in her best interests, In Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421. B was made a ward of court upon the refusal of her parents to consent to the surgery. Although she was later returned to their care, see Freeman, 1997, p. 171. 2 In Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421, per Templeman LJ, p. 1424. Giving her the life expectancy of a person with Down’s Syndrome. Without the surgery she would have died within a matter of days. Dunn LJ pointed out that the court could not determine that her life would be intolerable because it was not possible to determine her prognosis until she reached the age of about two. 1

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3 R v Arthur, 5 November 1981 (). Dr Arthur was prosecuted for attempted murder as it was not possible to establish that the baby died as a consequence of the acts/omission of the doctor. The jury found him not guilty. 4 7% of births in the UK are before 37 weeks gestation. The problems which may beset premature infants include respiratory difﬁculties which may require oxygen support or artiﬁcial ventilation, result in rupture of the lung or chronic lung disease. Premature babies are also at risk of brain damage due to bleeding, heart problems, feeding difﬁculties, inﬂammation and perforation of the bowel and at risk of serious infection, (Morley, 1991, p. 6). A study reported on BBC Panorama of 1,200 babies born alive at less than 26 weeks gestation found that 40% had moderate to severe cognitive development impairment at the age of 6, Miracle Baby Grows Up, 22 September 2004. 5 For personal accounts from Carol Glass see Day, 2004; Hardy, 2004; English, 2004 and David Glass’s website . 6 Re J (A Minor) (Wardship: Medical Treatment) [1991] 2 WLR 140, per Lord Donaldson MR, pp. 147–149. Ward LJ in Re A (children) (conjoined twins: surgical separation) [2001] 2 WLR 480, para. 7.4, doubted that this remains good law following the rejection of substituted judgement in Airedale NHS Trust v Bland [1993] AC 789 but did not examine the issue. Furthermore, what is required here is not determination of what the patient would have wanted (substituted judgement) but assessment of quality of life from the perspective of the child living with the disability. 7 Adrienne Asch argues that clinicians need to confront their own ambivalences about people with disabilities and be informed about living with disabilities by people who have the experience and, I would argue, their families, (Asch, 1998). 8 Although this case falls into the area where healthcare law and family law overlap. Mr and Mrs A underwent infertility treatment involving ICSI (intracytoplasmic sperm injection) in which Mrs A’s eggs were to be fertilised with Mr A’s sperm and any embryos used for their treatment (not the treatment of others or research). There was an error on the part of the clinic so that Mr B’s sperm was used to fertilise Mrs A’s eggs. Mr A sought a declaration that he was the legal father of the twins. This was refused since he was not the legal father under s 28 of the Human Fertilisation and Embryology Act 1990. Although Mr and Mrs A’s rights to respect for family life were infringed this was justiﬁed under Article 8(2) as the infringement was proportionate to protect the welfare and interests of the twins given the domestic family law remedies available. Likewise with the twins. 9 A conclusion predicted by A.R. Maclean, ‘The Human Rights Act 1998 and the Individual’s Right to Treatment’ (2000) 4 Medical Law International 245. 10 As would be the administration of medical treatment contrary to the refusal of a mentally competent adult patient, Pretty v United Kingdom [2002] FLR 45, para. 63. The court did not consider it necessary to address the issue of whether his mother’s Article 8 rights were interfered with. Nor did the majority ﬁnd it necessary to determine whether putting a DNR on his notes without his mother’s knowledge was an interference with David’s Article 8 rights. 11 Re C (a minor) (wardship: medical treatment) [1989] 3 WLR 240 and at the time of the hearing could not be contacted. C’s father accepted the medical advice. 12 Demonstrating less understanding of the difﬁcult position they were in Balcombe L.J. said of them: ‘I should mention the position of J’s parents. J’s mother has many problems and cannot cope on her own. J’s father has a better comprehension of what is here at stake. The parents have at times been prepared to accept the doctors’ recommendations, as indorsed by the judge, but at other times have followed the line taken by the Ofﬁcial Solicitor. Before us the parents’ counsel said (on the instructions of the father who was present in court) that the father wants J to have any chances there may be. This is a wholly

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understandable attitude, but not one which is of direct assistance to this court in the decision we now have to make.’ Re J (A Minor) (Wardship: Medical Treatment) [1991] 2 WLR 140, pp. 152–153. 13 Re J (A Minor) (Child in Care: Medical Treatment) [1992] 3 WLR 507. The judgment does not consider the views of the foster parents caring for J. 14 As in re C (a Baby) [1996] 2 FLR 43. Although C’s parents had ‘faced the position bravely’ agreeing with the medical opinion. 15 In A v UK [1998] 2 FLR 959. Despite much debate and support for a complete ban on the smacking of children and following from a consultation paper (DoH, 2000) s 58 of the Children Act 2004 only goes so far as to limit the justiﬁcation of reasonable punishment of children, in both criminal and civil law, to batteries which do not cause actual bodily harm.

References Asch, A. (1998) ‘Distracted by Disability’, Cambridge Quarterly of Healthcare Ethics, 7 pp. 77–87. Campbell, A.G.M. (1989) ‘Some ethical issues in neonatal care’ in Dunstan, G.R. and Shinebourne, E.A. (eds.) Doctors’ Decisions: Ethical Conﬂicts in Medical Practice, Oxford, OUP. Centre for Policy Studies (2004) People, Not Budgets: Valuing Disabled Children. Day, E. (14 March 2004) ‘Do Not Resuscitate – and don’t bother consulting the family’, The Sunday Telegraph. Davison, J. (6 August 1995) ‘Live or let die?’, The Sunday Times. DoH, (2000) Protecting Children, Supporting Parents: A Consultation Document on the Physical Punishment of Children. English, R. (10 March 2004) ‘A Mother’s Right to Decide’, The Daily Mail. Feder, E.K. (2002) ‘Doctor’s Orders: Parents and Intersexed Children’ in Kittay, E.F. and Feder, E.K. (eds.), The Subject of Care: Feminist Perspectives on Dependency, Lanham, Boulder, NY and Oxford, Rowman & Littleﬁeld Publishers Inc. Freeman, M. (1997) ‘Do Children Have the Right Not to Be Born?’ in The Moral Status of Children: Essays on the Rights of the Child, The Hague, Martinus Nijhoff Publishers. Hardy, R. (13 March 2004) ‘A Most Extraordinary Mother’, The Daily Mail. Harris, J. (2001) ‘Human Beings, Persons and Conjoined Twins: An Ethical Analysis of the Judgment in Re A’, Medical Law Review, 9(3) pp. 221–236. Hewson, B. (2004) ‘When maternal instinct outweighs medical opinion’ 154 NLJ522–523. Keown, J. (1997) ‘Restoring Intellectual Shape to the Law After Bland’, 113 LQR 481–503. Kiss, E. (1997) ‘Alchemy or Fool’s Gold? Assessing Feminist Doubts About Rights’ in Lyndon Shanley, M. and Narayan, U. (eds.) Reconstructing Political Theory: Feminist Perspectives, Cambridge, Polity Press. Kmietowicz, Z. (2001) ‘Down’s children received “less favourable” hospital treatment’ 322 BMJ 815. Maclean, A.R. (2000) ‘The Human Rights Act 1998 and the Individual’s Right to Treatment’ 4 Medical Law International. Mencap (2001) No ordinary life: The support needs of families caring for children and adults with profound and multiple disabilities. Minow, M. and Lyndon Shanley, M. (1997) ‘Revisioning the Family: Relational Rights and

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Responsibilities’ in Lyndon Shanley, M. and Narayan, U. (eds.) Reconstructing Political Theory: Feminist Perspectives, Cambridge, Polity Press. Morley, C. (1991) ‘Without Their Consent? Working with Very Premature Babies’ in Brazier, M. and Lobjoit, M. (eds.) Protecting the Vulnerable: autonomy and consent in health care, London, Routledge: London. Newson, E. (1978) ‘Unreasonable Care: The Establishment of Selfhood’, in Vesey, G. (ed.) Human Values, England, Harvester Press. Read, J. (2000) Disability, the Family and Society: Listening to Mothers, Buckingham, Open University Press. Toolis, K. (3 February 1996) ‘A Death for Thomas’, The Guardian.

Adolescent Gender Identity and the Courts MELINDA JONES Independent human rights scholar & consultant, former Director of the Australian Human Rights Centre, based in Melbourne, Australia [email protected].

Adolescence is a time of dramatic change, where children are growing rapidly and are searching for their identities. ‘Becoming’ rather than ‘being’ is an apt description of this period of life. Emotions run high; change is ongoing. Experimentation and risk-taking are common occurrences. Adolescents have a heightened awareness of their body image and a preoccupation with the physical changes to their bodies. They have an increased interest in sexuality and an important element of adolescent development is gender identity. While this has relatively rarely been seen as aspects of the right to health, issues of sexual health and well-being have played a signiﬁcant role in deﬁning the rights of the child. The entitlement of a child to decision-making power has been clariﬁed in the context of medical treatment. The standard approach to establishing where the parents’ responsibility ends, and where the child’s right to control over his/her own bodies begins, is to establish whether the child is ‘Gillick competent’. (Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112). When the child is aware of the nature and the consequences of a course of action, it is the child’s decision which counts. This landmark ruling was made by the English House of Lords, which found that a 15 year old had the capacity to seek contraceptive advice, and to decide to take the contraceptive pill, without the need for parental consent. The test is functional rather than statusbased. It is not determined by the speciﬁc age or stage of a child, but by the competency of the particular individual at the time of asserting the right. As such, the Gillick test ﬁts with the dynamic developmental model of children’s rights (Jones & Marks, 1994), and with those who consider that rights emerge with the child (Campbell, 1992; Freeman, 1983; Eekelaar, 1986). The Australian case of Marion (Secretary, Department of Health and Community Services v JWB and SMB (1992) 175 CLR 218 – known as Marion’s Case) could be seen as diluting ‘parental rights’ or as assuring that appropriate decision-making takes place where the child is not Gillick competent. The case involved a 13 year old girl with a signiﬁcant intellectual disability. The parents sought court authorization to sterilize their daughter. The High Court found that Marion was not Gillick competent, and suggested that Michael Freeman (Ed.), Children’s Health and Children’s Rights, 121–148 . © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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where what was at stake was a non-therapeutic invasive procedure, no child would be likely to meet the standard. However, these are not matters which the parents can simply decide on behalf of the child. The High Court made it clear that in decisions of this nature, a court must grant permission to carry out any medical treatment. Because of Marion’s subjective position, it was unnecessary to consider how to ensure that, consistent with Article 12 of the Convention on the Rights of the Child; the view of the child was appropriately taken into account. This article focuses on two recent Australian decisions where a court was called upon to authorize invasive medical procedures (Re A (1993) 16 Fam LR 715; Re Alex [2004] FamCA 297). Both cases concern young people who were extremely distressed about their gender identity, and had applied for permission to undergo sexual reassignment. These cases provide contrasting pictures in terms of the decision-making process and therefore with the extent to which the outcomes are well-grounded. Both cases raise issues regarding the rights of the child, the child’s right to consent and the role of the courts in medical treatment applications. Because there are no binding rules or guidelines for the courts to apply in special medical treatment decisions, there is a great difference in the way the respective courts make their judgments. The cases demonstrate that a ﬁrmer basis in values and process is required. The wide discretion available to judges needs to be reined in, and speciﬁc criteria for decisionmaking needs to be established. The risk to the denial of the child’s right to health is too great to be subjected to the whims and predisposition of unguided judges.

1. The Gender Re-Assignment Cases a) Re A (1993) 16 Fam LR 715 ‘A’ was born with ambiguous genitalia and an inter-sexed condition known as congenital adrenal hyperplasia. This disorder is the result of the over-production of androgens (male sex hormones) in the adrenal glands of the foetus, which in a female foetus causes masculinization of the genitalia. In A’s case, although the child was born with normal female fertility, the degree of masculinization at birth meant that she had a clitoris exactly like a male penis, and the labia were fused together in such a way that they gave the external appearance of an empty scrotum.1 As a result there was some initial confusion as to the child’s gender. The birth certiﬁcate recorded the birth of a boy, with a male name, but the child was, until the time of the hearing, known by a female name. A sufﬁcient number of children are inter-sexed for American texts to list this as a common childhood ailment (Ford, 2000). In cases such as A’s, where chil-

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dren are diagnosed with congenital adrenal hyperplasia, it is standard practice to raise the child as a female. Medical treatment consists of surgical genital reconstruction and cortisone hormone treatment to replace the absent hormones and to prevent any further masculinity. As this treatment is highly invasive and the surgery primarily cosmetic, there is a question as to whether the decision to consent to the treatment lies with the parents or it is a matter which should be adjudicated by a court. A number of commentators consider the surgery of inter-sexed infants sufﬁciently contentious to be a Western form of female genital mutilation – a practice outlawed in its traditional manifestation. (Ford, 2000; Cole, 2003; Briffa, 2003) Instead of seeing gender on a continuum from male to female, with a wide variety of alternative valid experiences, gender is seen as being forced into binary categories of the sort which dominate Western intellectual thought. Further, there is research indicating that there is a high incidence of making the wrong choice at birth (Briffa, 2003, 15), which results in traumatic decisions to redo what was undone. A’s case would certainly have been different had the parents allowed the child to determine his or her own gender at an appropriate age. As A’s parents were aware, the treatment of congenital adrenal hyperplasia by hormones is a life-long process, for without this intervention the adrenal glands would continue to produce male androgens. While A’s parents accepted the medical advice, and hormone treatment commenced within a week of A’s birth, they did not ensure that A was given the required hormone treatment. Instead, they attended the Endocrine Clinic relatively infrequently and only complied with the treatment programme approximately a third of the necessary times. The result was that A became progressively more masculine in appearance, and her clitoris had regrown to a considerable degree. She also experienced what she described as painful erections. Further, she found herself sexually attracted to women. These factors had a profound effect on A’s mental development, such that by the age of 13 she wished to be a boy. She sought medical advice and became determined to undergo gender-reassignment surgery. In order to transform A from female to male, a number of operations were envisioned. The ﬁrst involved sterilisation – the total removal of healthy female internal genitalia including the ovaries, tubes and uterus. A further 2 or 3 operations would be required to reconstruct the external genitalia, to give the physical appearance of a man. This was a complex multi-stage process, and no guarantee could be given that A would be able to void while standing or that the appearance would result in normal male genitalia. On top of this, A desired to undergo bilateral mastectomies. The process would take place over two years during much of which A would be recovering from the surgery. Because gender-reassignment surgery is highly invasive, irreversible, major surgery and not a medical necessity, the doctors involved requested court

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approval before they would proceed. A and her mother applied to the Family Court of Australia for consent to undertake the medical treatment. This was ultimately approved by the Court. b) Re Alex [2004] FamCA 297 Like A, Alex approached the court with respect to gender re-assignment. However, his situation was quite different from A’s. Although both his chromosomes and his external genitalia were unequivocally female, Alex suffers from a condition known as gender dysphoria or gender identity disorder, previously referred to as transsexualism (Vitale, 2001, 124).2 This condition arises when the brain sex of the person conﬂicts with the other means of gender identiﬁcation (Gooren, 2000; Zhou J.-N. et al., 1997). This was accepted in the Australian Full Court of the Family Court, which held that . . . the weight of medical opinion generally agrees that in the instance of a transsexual person, that individual is born with a brain that recognises him or herself as a member of the sex opposite to that whose physiological indicia he or she bears. The expert evidence before his Honour, which he accepted, was that this was probably of biological origin within the brain. (In Re Kevin (Validity of marriage of transsexual) (No 2) (2003) FLC ¶93–127 para 56)

In these rare cases, a person feels entirely disembodied. They have a distinct, profound and longstanding belief that their bodies do not belong to them, and they experience deep trauma and pain at the reality of their gender classiﬁcation. Gender dysphoria usually involves extreme emotional and behavioural difﬁculties: “In the course of psychosexual development, the young person ‘experiences their phenotypic sex as incongruous with his or her own sense of gender identity’, and adolescents with this condition often experience intense distress.” (Spriggs, 2004, 319) As a young child, Alex had assumed himself to be a boy, and had expected to grow a penis in the fullness of time.3 He was distressed when he ﬁrst saw his mother naked and realised that her adult appearance corresponded to his own. Alex had been brought up by his father, to whom he was very close. When the father died, Alex was sent from where he had lived in Greece, to his mother in Australia. The mother quickly rejected Alex, and at the time of the application he was living with his aunt. Alex experienced a severe case of gender identity disorder – his desire to live as a male and become male in appearance was longstanding, and he went to great lengths to conceal his female body. For example, at school he was so determined to avoid using the girls’ toilets that he wore nappies to school and avoided drinking liquid to reduce his need to urinate. Similarly, he refused to attend a camp where he would be expected to sleep in the girls’ quarters, until it was arranged that he could sleep in one of the single rooms available for children with disabilities. Prior to the application to the

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Court, Alex had experienced major depression, had suicidal ideation, and displayed a range of behaviour problems (including self-harming behaviours) which diminished as he gained recognition of the male status so desired. The proposed course of gender re-assignment treatment Alex requested was not as dramatic as that requested for A, although it is nonetheless controversial (Spriggs, 2004). It does not involve surgery, although this option would remain open to Alex, should he still desire it once he reached the age of majority. What was sought was authorization for a staged process, involving both reversible and irreversible treatment. The ﬁrst stage involved the continuous administration of the contraceptive pill. This would delay the development of female secondary sexual characteristics, avoiding menses and breast growth. Both these aspects of development were repulsive to Alex and would be dangerous to his mental health were they not prevented. The treatment involved is entirely reversible, so that there was little risk of a wrong decision being made. The second stage of the gender re-assignment treatment sought involved hormone therapy which would result in the masculinisation of his voice, muscle growth, increase in facial and body hair, and the growth of the clitoris. The hormonal treatment would also have masculine behavioural effects and its impact would be primarily irreversible. The ﬁnal stage of the process would be gender re-assignment surgery, but that was not a matter contemplated by the application. Although the treatment proposed involved signiﬁcant medical intervention in Alex’s life, while he remained a child he would remain a sexually normal female and retain normal female fertility. As such, the Court’s decision was to allow the staged approach. The decision was seen as a package: the ﬁrst stage could commence immediately; the second stage could commence when Alex reached his sixteenth birthday, if at this time he maintained his desire to become a boy. Throughout both stages Alex was to receive psychiatric counselling to support him through the process. It was felt that the consequences of not approving the application far exceeded any risk involved in making an afﬁrmative decision, and that allowing the procedure was consistent with the best interests of the child.

2. Issues Arising from the Cases Given the seriousness of the issues relating to gender identity and the degree of bodily intrusion involved in gender reassignment, it is important that the optimal outcome is achieved in cases such as these. The degree of difﬁculty of undergoing the procedures, and the real likelihood that gender re-assignment will result in discrimination, ensures that decisions to proceed with treatment will never be taken lightly (Gooren L., 2000; Cole J., 2003; Briffa, 2003).

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However, from a physical perspective, the medical treatment sought in these cases is not dictated by medical necessity. If there is no urgency in acting, a fundamental question is whether the decision to undertake gender re-assignment could wait until the adolescents reached adulthood, when these procedures would be legally unproblematic. I now turn to the three primary issues arising from the cases. The ﬁrst issue is the relationship between the proposed treatment and the rights of mature children. The second issue is the question of who may consent to medical treatment when the patient is a minor. The third issue is the question of the appropriateness of the courts being involved in medical decision-making. These issues lead us to inquire about the basis of decision-making – not the question of who should decide, but the process of decision-making and the factors to be taken into account. a) The rights of the child Asserting that children have rights involves the claim that children are entitled to be treated with equal concern and equal respect and without discrimination, at the same time as recognizing their vulnerability and their place within the family. While rights have often been described as trump cards (Dworkin, 1977), where there is a winning hand, the development of children’s rights has given rise to a relational view of rights (Jones M. & Marks L.A.B., 2001; Minow M., 1990; Olsen F., 1992). On this account, children, by virtue of being rights-bearers, are included in the conversation involving the exercise of power, and are entitled to participate in decisions affecting them. Recognising children as rights-bearers involves according them respect proportional to their age, maturity and understanding (Jones M. & Marks L.A.B., 1994; Jones M. & Marks L.A.B., 2001). Parents have responsibility for the well-being of their children, and this means that they must nurture their independence and decision-making capacity such that they are appropriately prepared for adulthood. The Convention on the Rights of the Child has given legal effect to the rights of the child.4 Children are deﬁned as those of under the age of 18, and the rights applicable to children are both substantive and procedural. Three articles of the Convention are potentially of relevance to the issues involved in the cases discussed. These are Article 3, dealing with the best interests of the child; Article 12, relating to the child’s wishes; and Article 8, concerning the right to identity. 1. The best interests of the child Article 3(1) provides that “the best interests of the child shall be a primary consideration” in all matters concerning children (Alston P., 1994). Article 3 requires that whenever children are players or participants, whether this be in

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the family, in the education system, at recreation, or within the criminal justice system, decisions which affect the child can only be taken after a consideration of the child’s position. It is necessary to establish which outcome will be in the best interests of the child, and to take that matter into serious consideration in the decision making process. The application of the best interest principle is discussed below. 2. The wishes of the child and the Role of a Child Representative Another provision of the Convention on the Rights of the Child of signiﬁcance in these cases is Article 12, which provides that children have the right to be heard, both socially and in judicial and administrative proceedings. However, while children who are capable of forming views of their own have the right to express those views freely in all matters concerning them, the weight given to their wishes is dependant on the age and maturity of the individual. In both cases under consideration, the children were given scope to present their perspective on the treatment sought, and in each case they were anxious to be allowed to proceed with gender re-assignment. Each child was heard respectfully by the judge. In Alex, Chief Justice Nicholson met with Alex in private in order to appreciate fully the child’s perspective on the application, and respected his wish that the conversation be conﬁdential (para 43). It is unclear how A’s voice was heard during the hearing, although Mushin J reports that A requesting “Just make me back into a boy, just like I was when I was born”. In accord with each child’s wishes, each Court referred to the young applicant as ‘he’. This was indicative of the respect accorded the child in these cases, but may have unduly inﬂuenced the outcome of the cases. It would have been quite undermining had the Court accepted the chosen gender identity and then refused to allow them treatment to conﬁrm that gender. To have done this prior to the outcome of the hearings raises a serious issue for the Courts. Article 12 envisages the possibility that a child’s right to be heard may be discharged through the appointment of a representative or another appropriate body. In cases such as those under consideration, it may be an advantage for the child to be separately represented in the proceedings. (A separate representative does not, in common law, take instructions from the child or simply reﬂect the stated wishes of the child: Family Law Council, 1989; Human Rights & Equal Opportunity Commission, 1989; Australian Law Reform Commission, 2004). Although part of the task of a separate representative is to ensure that the opinion of the child is sought, the separate representative has the task of helping with the collection of evidence to present to the court an independent view of what is in the child’s best interest. In A’s case there was no separate representative involved, although were this legally required it would have solved a signiﬁcant problem that the court confronted. This

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problem is that in many medical treatment cases there is no natural contradictor, and so the application in A’s case was effectively an ex parte application. Justice Mushin commented about the difﬁculty this posed: A difﬁculty which I have faced in this matter has been that I have not had the beneﬁt of anybody to put the contrary view to the court. It is clear that A has very strong wishes in this regard and the application is supported [by] the Public Advocate. While it is reasonable to infer that the apparent non-existence of a person to argue against the granting of the relief sought by the mother leads to the conclusion that the case for the relief is strong, I must comment that it would have been most helpful to hear a contrary argument put (16 Fam LR 715 at 721).

In an adversary judicial system such as Australia’s, the courts depend on the material presented by the opposing parties. Where there is no opposing party, the only means of obtaining information additional to that presented, is to adopt a more inquisitorial style of decision-making. Chief Justice Nicholson solved the problem in Alex by allowing the Court to operate less formally than usual, and by playing an investigative role in the proceedings (para 43).5 The effect was that the hearing . . . often took the form of an orderly discussion between witnesses and legal representatives (including, sometimes, instructing solicitors) and myself . . . [the beneﬁt of which included] hearing witnesses engage in a dialogue in respect of each other’s evidence. (para 43)

Further, in Alex, Chief Justice Nicholson appointed a Child Representative at the ﬁrst occasion that the matter was before him, and the Child Representative subpoenaed evidence and arranged for the preparation of a Family Report. The Human Rights & Equal Opportunity Commission was also given leave to intervene in the case. The hearing process was modiﬁed in a manner which “enhanced the depth and richness of the evidence, and thereby better served the aim of an outcome which will be in Alex’s best interests”. (para 41) While the hearing process adopted by the Court in Alex is clearly within the power of the Family Court, it is not mandated or even formally recommended that hearings be conducted in this manner. Despite the obvious beneﬁts, in particular with respect to the evidence presented and the potential quality of the outcome, the choice as to how to manage the case is almost arbitrary. If the best interests of the child are to be properly understood, it would seem essential that an independent representative is appointed to ascertain the child’s views and to ensure that there is a full range of evidence relating to the child’s position. 3. The right to identity The third right of potential relevance to these cases is the right to an identity, provided for by Article 8 of the Convention on the Rights of the Child. Article 8 obliges states parties to the Convention to “undertake to respect the

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right of the child to preserve his or her identity, including nationality, name and family relations”. The right to identity includes nationality, name and family relations, which suggests that other aspects of identity may also be protected by the Convention. It is at least arguable that the gender identity of the child is included within the terms of Article 8 and that that aspect of the child’s identity must be respected. Having said this, however, it does not necessarily follow that respect for gender identity requires the authorization of any particular medical treatment proposed, even if that treatment is consistent with the child’s sense of personhood. This matter was raised in Re Alex, by the Human Rights & Equal Opportunity Commission which intervened in the case. Chief Justice Nicholson agreed with the submission as a matter of general principle, and considered that the issue of the right to identity weighed in favour of authorization of the procedure (paras 220–224). b) Consent to medical treatment Doctors and medical professionals are protected from charges of assault and battery by the doctrine of informed consent. In common law, the position of a competent adult is rarely problematic. As long as the consent is voluntarily given on the basis of information about the risks of the procedure, medical practitioners are protected from suit even if the outcome of the procedure is less than ideal.6 The doctrine of consent recognises the adult’s right to self-determination and autonomy, ensuring that adults have the right to be free of unwanted bodily contact and to decide whether such contact should occur. The position of children, and of adults deemed to be incompetent, is far more complex. 1. The ability of the child to consent to medical treatment Medical treatment decision-making is one context in which the idea of children having rights has become meaningful. This was made clear in the highly approved decision of the English House of Lords, Gillick (Gillick v West Norfolk and Wisbech Area Health Authority [1986] AC 112) in which it was held that once a child has a “sufﬁcient understanding and intelligence to enable . . . her to understand fully what is proposed” (Marion’s case (1992) 175 CLR 218, 237) the decision is hers to make. Decision-making capacity does not depend on the age of the child, but on subjective features of the child in respect to the particular treatment proposed. Independent of age, ability or disability, a child may be Gillick competent for some purposes, and be able to consent to speciﬁc medical treatment, but not be Gillick competent with respect to other medical procedures. Medical practitioners are required to make an assessment of the child’s competency, and to respect the child’s rights to conﬁdentiality and privacy once

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they have given their consent. This is important because there are many situations in which the child will not want to involve his or her parents, and will only seek advice if they can be assured of conﬁdentiality (Davis & Mykitiuk, 2001). For example, it is crucial that children can approach medical practitioners for matters involving contraceptive advice and other issues related to sexuality and reproductive rights. Many children would only seek help in these areas if they were conﬁdent that their inquiries would remain conﬁdential. Ignorance with respect to these matters can put an adolescent at risk – early pregnancy and the contracting of sexually transmitted diseases pose a great threat to adolescent health (Davis & Mykitiuk, 2001; United Nations, 2003). Gilllick has been criticised for requiring a higher standard of insight on the part of children than the law imposes on adults (Enright, 2003). It has also been undermined in fact, in cases involving the right to refuse medical treatment (NSW Law Reform Commission, 2004; Bunney, 1997; Mendelson, 1996; Freeman, this volume).7 However, it remains the basis on which we can best understand the concept of children’s rights, and it nonetheless remains the legal authority on medical treatment. The Gillick standard accords with international law, reﬂects experience and psychology and is respectful of the emerging rights of the child (Marion’s case). The role of the court in the situation where a child is found to be Gillick competent was not at issue in either Re A or Re Alex. In both cases, the children were acknowledged to be troubled mature minors, and both were held to lack Gillick competence. In A’s case, Mushin J. commented: A understands the problem and, in general terms, the way in which it is proposed that such problem be resolved and further, the child has expressed a desire that such resolution take place. However, I am not satisﬁed that A has sufﬁcient capacity and maturity to fully appreciate all aspects of the matter and to assess objectively the various options available to him. (16 Fam LR 715, 720)

In Re Alex, Chief Justice Nicholson commented: In my view, the evidence does not establish that Alex has the capacity to decide for himself whether to consent to the proposed treatment. It is one thing for a child or young person to have a general understanding of what is proposed and its effect but it is quite another to conclude that he/she has sufﬁcient maturity to fully understand the grave nature and effects of the proposed treatment (para 168) . . . It seems to me that there is a considerable difference between a child or young person deciding to use contraceptives as in Gillick and a child or young person determining upon a course that will “change” his/her sex. It is highly questionable whether a 13 year old could ever be regarded as having the capacity for the latter, and this situation may well continue until the young person reaches maturity. ([2004] FamCA 297, para 173)

Once it is found that the child him or herself is unable to consent to the medical treatment at present, the question of whether the particular child will ever

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have the capacity to consent, raised in Gillick & Marion, needs to be considered. The implication of this question is that if there is the possibility that the child could decide to undertake the proposed treatment at a later date, the matter should be left until the child was able personally to consent. The idea that the possibility of future consent should result in a ﬁnding against a current application has been reiterated in a number of cases, but I can ﬁnd no case in which the decision has turned on this point.8 It may be, therefore, what is colloquially known as ‘a furphy’ – a distraction from the real issues. Nonetheless, when dealing with major invasive surgery in the absence of the child’s consent, leaving the matter until either the child reaches majority or until they become Gillick competent, may be the most respectful decision. Mushin J. commented in A’s case that I had nevertheless considered the possibility of rejecting the application on the basis that it is only another three and a half years until A attains 18 years and at that stage it would be open to him to make his own decision. (16 Fam LR 715, 722)

An applicant must present a strong case explaining why the medical treatment should proceed rather than wait. My own research into the position of people with inter-sex conditions suggested that there may be good reasons to authorise immediately the dramatic surgery proposed.9 However there is no evidence that Mushin J. had access to any information about inter-sexed people. He provided no reasons in his judgment as to why the matter couldn’t wait, beyond an untested psychologist’s views.10 The judgment presents no discussion about whether a less invasive option could be considered.11 Given that it was too late to prevent the onset of secondary female characteristics, it may be that the danger of waiting until majority would be slight. A appears to be quite naïve, and he seems to think that once the process is authorised it will be smooth sailing.12 Bearing in mind that what was being sought was a number of major operations over an extended period of time, it is worrying that the judge did not consider other courses of action. For example, in the context of transgender people, there is a good deal of evidence that their anxiety, suicidal ideation and depression are alleviated simply by a programme of action being put into place (Vitale, 2001, pp. 127–8). Further, transgender people are expected to pass the ‘real life’ test, living as their chosen gender for at least a year, before proceeding to surgery. It could be argued that a staged programme, which acknowledged A’s preferred gender but left gender re-assignment surgery until adulthood, could have been adopted. As noted above, such a staged process was authorised in Re Alex. Although Alex would become competent to consent to surgery at some time in the future, there were good reasons why the process should begin while Alex was a child. Unlike the decision-making process in Re A, Nicholson CJ carefully considered alternative ways of dealing with Alex’s gender identity issues. He

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found that “[t]he prognosis for behavioural intervention to change Alex’s selfimage and behaviour is poor” (para 206) and that . . . if treatment is not permitted there is consistent concern that Alex will revert to unhappiness, behavioural difﬁculties at home and self-harming behaviour. Socially, he will be signiﬁcantly ill at ease with body and self-image during his period of adolescent development until he is competent to make his own treatment decision. Transition into a male public identity will be more difﬁcult than if it occurs at the commencement of secondary school. (para 209)

Intervention to prevent the development of secondary female characteristics in this case was both reversible and timely. The irreversible second stage of treatment authorized is far less invasive than the intense medical intervention authorized in Re A. Yet in Re Alex the Court only allowed the treatment on the basis that the hormone treatment is accompanied by ongoing psychological and psychiatric support. The importance of such support was noted in Re A, but it was not ordered even though there was a real chance that A would not accept the support (16 Fam LR 715, 723). 2. When the child cannot consent There are some matters about which it would seem that children can never be found Gillick competent.13 These include cases involving life and death decisions, and a class of procedures which are major and irreversible, and which have signiﬁcant consequences. Because of the risk of the wrong decision being made, or because there is potential for conﬂict of interest between the parents and the child, the courts have held that not only is the child unable to consent, but neither do the parents have authority to consent (Marion’s Case at 250; P v P (1994) 181 CLR 583). In such cases, the common law now considers that applications must be made to courts or other competent authorities before any medical treatment commences. Gender re-assignment involves major irreversible processes, where the stakes in the decision are high. The courts in each of the cases under consideration considered that medical procedures leading to gender re-assignment to fall into this exceptional category and that the court alone had jurisdiction to consent. To come to this conclusion courts need to establish, ﬁrst the basis of their power to make decisions of this nature, and secondly, that the procedure was appropriately classiﬁed as a special medical procedure. On the ﬁrst point, the common law courts rely on the inherent power of superior courts to look after the well-being of the weak and those in need of protection. Known as parens patriae, the welfare power was originally developed to protect property rights, but has more recently been used as the source of power to decide medical cases. Although it is not a superior court, the parens patriae jurisdiction is vested in the Family Court of Australia through provisions of the Family Law Act (Cth).14

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The second jurisdictional issue involves a determination of whether the major irreversible medical treatment requires court authorisation. The law in this area was developed in the context of the sterilisation of intellectually disabled young women. It was acknowledged that not every sterilisation would require an application to the court. If the medical procedure was carried out in response to a medical need such as to repair damage or deal with disease, the decision would be an ordinary medical one and come within the power of parents (Marion’s Case, 229–236; 253). The difﬁculty is drawing the line between the two classes of procedures. The test developed attempts to distinguish therapeutic from non-therapeutic procedures.15 Although sterilising women with intellectual disabilities had been ‘medicalised’ (Marion’s Case, 250–252), it often had more to do with social, cultural or political perspectives on the rights and entitlements of people with disabilities. The Australian High Court in Marion’s case commented: We hesitate to use the expression ‘therapeutic’ and ‘non-therapeutic’, because of their uncertainty. But it is necessary to make the distinction, however unclear the dividing line may be. (Marion’s Case, 250)

One means of drawing the line between therapeutic and non-therapeutic treatment is to apply the ‘but for’ test.16 In sterilisation cases this test works well – if the procedure would not be undertaken ‘but for’ the intellectual disability, it is automatically suspect. Decisions to sterilise intellectually disabled people could easily be motivated by eugenic considerations, to protect the person from the consequences of sexual abuse, for contraceptive purposes and for the purposes of menstrual management (Family Law Council, 1994). The interests of the carer could conﬂict with the interest of the person to be sterilised. As a result, the risk of a wrong decision was high and the consequences of a wrong decision would be serious. While the ‘but for’ test could alert both medical practitioners and courts to the dangers of the sterilisation, and it is a valuable indicator of discrimination against people with disabilities, it is unhelpful in the cases under consideration. This is because without the particular disabilities or conditions leading to the application for gender re-assignment, there would be no imaginable reason for undergoing the treatment. It seems to me that not only is the but for test unhelpful, but the therapeutic/non-therapeutic distinction doesn’t hold at all. Other than the sterilization cases, where the applications are based on perceived social rather than medical need, the only cases where the distinction makes sense are those involving organ or tissue transplant. In the circumstances where the donor is a child, the procedure to facilitate the transplant is clearly not therapeutic for the child.17 However in Michael’s case, the application was regarding the performance of cardiac surgery on an 11-year-old boy where parental consent was refused. The procedure was clearly therapeutic in the context of congenital

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heart disease (Re Michael (1994) FLC ¶92–471 and Re Michael (No 2) (1994) FLC ¶92–486). Similarly it is unclear that the procedures in Re A and in Re Alex are non-therapeutic. Although both A and Alex had medically recognized conditions, and the applications were with respect to the treatment of their conditions, the judges claimed that the decisions before them concerned non-therapeutic procedures. In A’s case, Mushin J discusses the distinction, then comments: With respect to the present case, it might be argued that the sterilisation is a “byproduct of surgery appropriately carried out to treat some malfunction or disease”. . . . The proposed medical treatment will require invasive, irreversible and major surgery. In addition . . . it is abundantly clear that court authorisation is required in the present case “ﬁrst, because of the signiﬁcant risk of making the wrong decision, either as to a child’s present or future capacity to consent or about what are the best interests of a child who cannot consent, and secondly, because the consequences of a wrong decision are particularly grave”. There will not only be biological, but also social and psychological consequences of the proposed intervention. (6 Fam LR 715, 720)

As such, Mushin J is relying on the general category of cases which need to be divided into classes of therapeutic and non-therapeutic, while implying rather than arguing that A’s case falls into the latter class. However, the complex, invasive medical treatment is only proposed as a means of treating A’s inter-sexed condition. In Alex’s case, Nicholson CJ devoted a number of pages to his argument that the proposed procedure is non-therapeutic. Although the judgment is based on a treatment plan to rectify Alex’s gender dysphoria, Nicholson claims: The current state of knowledge would not, in my view, enable a ﬁnding that the treatment would clearly be for a “malfunction” or “disease” and thereby not within the jurisdiction of this Court as explained by the majority in Marion’s case. To my mind, their Honours were seeking in that case to distinguish medical treatment which seeks to address disease in or malfunctioning of organs. In the context of sterilisation for example, they would seem to have had in mind a malignant cancer of the reproductive system which required an intervention that was medically indicated for directly referable health reasons. The present case does not lend itself to such a comparison (para 195).

There is a fundamental contradiction in these cases. At the threshold, the case must involve non-therapeutic medical treatment if the court is to have jurisdiction to make the decision. If a therapeutic treatment is sought, it is within the parent’s decision-making power if the child is not Gillick competent. However, for the sort of treatment applied for in Re A or in Re Alex to be authorized, it must be proportionate to the child’s interests. It is difﬁcult to imagine that major, invasive irreversible surgery such as gender re-assignment surgery could ever be considered appropriate unless it was found to be a reasonable

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response to the problem it was intended to solve. Therefore, in order to authorize the medical treatment, the courts would have to ﬁnd that the procedure was therapeutic (that is, is a medical response to a medical problem). I do not want to suggest that these are not the types of cases requiring independent decision-making. On the contrary, experimental or unusual situations involving major irreversible medical processes performed on children require the sort of careful and measured judgment provided by external bodies such as courts. This allows for heightened accountability, and protects both the parents and the medical practitioners. Most importantly, it protects the child from abuse in the name of medicine. However, a new way of articulating the class of cases which fall into the category of procedures requiring court authorisation must be found. c) The process of decision-making Once is it conﬁrmed that the court is the appropriate decision-maker, the question arises as to the grounds on which the decision should be made. 1. The best interests of the child In all cases involving parens patriae jurisdiction, the governing principle of decision-making is the best interests of the child. However the concept of ‘best interests’ is too vague a standard to provide guidance to decision-makers (Wolfson, 1992; Parker, 1994). Virtually any outcome could be defended as consistent with the best interests of the child. Deciding what is best for a child poses a question no less ultimate than the purposes and values of life itself. Should the judge primarily be concerned with the child’s happiness or with the child’s spiritual and religious training? Should the judge be concerned with the economic productivity of the child when he grows up? . . . [I]f the judge looks to society at large, he ﬁnds neither a clear consensus as to the best child rearing strategies nor an appropriate hierarchy of ultimate values. (Mnookin, 1975, 260)

There have been many calls for guidelines, particularly given the serious nature of the decisions under consideration (Brady et al., 2000; Fellowes, 2000). Brennan CJ commented in P v P that: the diversity of values and circumstances which would affect decisions to make sterilisation orders precludes any realistic expectation that decisions would not be made according to the idiosyncratic opinion of individual judges. ((1994) 120 ALR 545, 569)

This would be equally true of judges hearing gender re-assignment cases. Guidelines have been developed by the courts speciﬁcally in the context of medical decision-making, beyond those speciﬁc to sterilisation cases18

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(Nicholson et al., 2001; Family Law Council of Australia, 1994). In Re Jane (1998) 12 Fam LR 662, Marion (No 2) (1992) 17 Fam LR 336 and again in Re Alex (para 201ff ), Nicholson CJ articulated a set of factors relevant to determining the best interests of the child. The factors include: (i) The particular condition of the child or young person which requires the procedure or treatment (ii) The nature of the procedure or treatment proposed (iii) The reasons for which it is proposed that the procedure or treatment be carried out (iv) The alternative courses of treatment that are available in relation to that condition (v) The desirability of and effect of authorising the procedure for treatment proposed rather than available alternatives (vi) The physical effects on the child or young person and the psychological and social implications for the child or young person of authorising the proposed procedure or treatment or not authorising the proposed procedure or treatment (vii) The nature and degree of any risk to the child or young person of authorising the proposed procedure or treatment or not authorising the proposed procedure or treatment (viii) The views (if any) expressed by the guardian(s) of the child or young person, a person who is entitled to the custody of the child or young person, a person who is responsible for the daily care and control of the child or young person, and the child or young person himself, to the proposed procedure or treatment and to any alternative procedure or treatment. A further principle, which may be a matter of best interests or be a limitation of the best interests principle, is that all invasive procedures that have the effect of threatening the bodily integrity of the individual and may undermine their human rights should only ever be authorized as a last resort (the majority in Marion, 259–260; Nicholson CJ in Marion (No 2) (1992) 17 Fam LR 336, 350). This means that not only must alternative processes have been investigated, but they must also have been implemented and found to fail to resolve the problem. 2. Decision-making in the Courts The different decision-making processes in Re A and Re Alex, and the unsatisfactory nature of the decision in Re A, become apparent when the best interests of the child are assessed in the light of the factors developed by Nicholson CJ.

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(i) The particular condition of the child or young person which requires the procedure or treatment Re A: A has an inter-sex condition. Of the three means of identifying gender, it would seem that the chromosomes are female, the brain sex male, and the genitalia ambiguous. As an infant A was subjected to genital surgery, and as a child she partially complied with the process of hormone treatment to deal with the masculinisation. The current position is that A desperately wants to be a boy and assumes that highly invasive medical procedures are required. Because this was insufﬁciently discussed, we do not know if there is an alternative explanation for A’s current situation. Other than physical complaints, which are the direct result of the failure to comply with the medical process begun in childhood, it was noted that A was sexually attracted to girls. The possibility that A is a lesbian was not raised. Millbank has argued that this is consistent with the picture of A presented and would suggest that surgical intervention is totally inappropriate (Millbank, 1995). Re Alex: Alex’s situation is more straightforward. Alex’s genitalia and chromosomes are female. His brain sex is male. He has gender dysphoria, and has had a long-standing gender identity crisis. No other description of the problem ﬁts the facts. Over a period of time, Alex’s sense of his body had led to serious behaviour problems. It was conﬁrmed in the judgment that Alex’s problems relate to gender not sexuality (para 205). (ii) The nature of the procedure or treatment proposed Re A: It is essential that the exact nature of what is requested is understood. In A’s case, the proposed treatment involved a number of major operations requiring anaesthetic. The procedures would be conducted over much of A’s remaining childhood, and could be expected to take A out of school on numerous occasions. The medical characterization of the treatment plan is (a) bilateral mastectomies; (b) hysterectomy and oophorectomy; (c) unfolding of the clitoris to increase its length and to relieve pain caused by erections; (d) closure of the labia to create the appearance of a scrotum; (e) the insertion of prosthetic testes; and (f) such further or other necessary and consequential procedures to give effect to the treatment of the child. Re Alex: Much less is being proposed in Alex’s case. There is no request for surgical intervention. Rather, it is proposed that Alex be prescribed the contraceptive pill to suppress the development of secondary female characteristics, and hormonal treatment when he reaches 16 to develop male characteristics. The ﬁrst process is reversible should the decision transpire to be wrong. The second part of the process is irreversible. The hormone treatment is to be accompanied by on-going psychological and psychiatric support.

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(iii) The reasons for which it is proposed that the procedure or treatment be carried out Re A: The reason why the procedure is proposed for A is that it is expected to resolve gender ambiguity and the psychiatric effects of this being unresolved. No evidence was presented about how the desire to become male had affected A, beyond recent expression of suicidal thoughts. We do not know how deepseated the desire to become male was. We do not know if, independent of the proposed treatment, A had attempted to live as a boy. We do not know if A had refused to attend school wearing the girl’s uniform or if A had become distressed whenever the assumption of female gender was made. Behaviour of this sort was part of Alex’s story. The proposed procedure for A is so invasive that one would have expected that evidence about the need for treatment would present an extreme situation. Re Alex: The reason why the procedure is proposed for Alex is because it is the recommended response to profound gender dysphoria, which will be more easily managed if Alex does not have to deal with menstruation and the development of breasts. Alex’s problems were evident in a range of behaviours which indicated that Alex found the state of his body intolerable. The timing of the application also recommended that the procedure should be allowed. An immediate decision would make the transition from female to male considerably simpler if the process were to commence before Alex entered high school. (iv) The alternative courses of treatment that are available in relation to that condition Re A: Although Mushin J comments that “alternative and less invasive procedures have failed and there is now . . . no other procedure or treatment which will provide the desired outcome” (16 Fam LR 715, 721–2), there is no discussion in the judgment of what alternatives there may be, what happened when they were pursued, and why they failed. Before authorising such dramatic measures as allowed in Re A, one would hope that consideration was given to this point. Re Alex: In Alex’s case, the only alternative suggested was behavioural intervention, the prognosis for which was considered to be poor. Alex was already receiving counselling, and the professional’s all agreed that the stage treatment was the only alternative solution. Attempts to ‘cure’ people of gender dysphoria through counselling have proved highly unsatisfactory (Downs & Whittle, 2000). (v) The desirability of and effect of authorising the procedure for treatment proposed rather than available alternatives Re A: Mushin J simply asserts that this is the most desirable outcome for A, given that this is what A wants and expects. He does cite the psychologists treating A in support of the decision, but these views are not tested against those

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of other experts or the consideration of any other course of action. Although A was said to be suicidal about the current state of play, this may be a result of depression or other mental illness, albeit related to the inter-sexed condition which no-one, especially an adolescent with all the typical confusion about emerging sexuality, would cope with easily. If this were the case, it is possible that antidepressant or other drugs may have a positive role in treating A. Re Alex: Nicholson C.J. works through the expert opinions and the opinions of those involved in treating Alex. He is persuaded by the weight of evidence that authorising the procedure will help Alex’s socialization into his chosen gender identity and that it will counter-act Alex’s self-harming and suicidal behaviour. The fact that this is consistent with Alex’s wishes is also signiﬁcant. (vi) The physical effects on the child or young person and the psychological and social implications for the child or young person of authorising the proposed procedure or treatment or not authorising the proposed procedure or treatment Re A: One alternative is always to refuse to authorize the procedure. Mushin J, however, was very concerned not to upset A, who believed that the Court would allow the process. Strikingly absent from the decision is any discussion of the psychological and social implications of allowing the procedure. There is no mention of the impact of frequent hospitalization, of the pain and risk of surgery, of the time A will not spend at school, or of the effect the procedure will have on A’s social life over the years it will take for the process to be completed. The medical opinion that there is no guarantee that the operations will result in normal-looking male genitals or in the ability to urinate standing, did not even elicit comment from the judge. The psychological risks of not proceeding are referred to, but these are not balanced against the risks which always accompany surgery. There is no evidence that A even considered the problems incumbent in the treatment, or that s/he was aware that there may be unintended side-effects or consequences. The effect of not authorising the proposed treatment played a greater part in the decision. Mushin J was “satisﬁed that A’s sense of social and biological identity and self esteem depend to a very large extent upon the performance of the procedure the subject of this application” (16 Fam LR 715, 721). A would be “devastated” if the treatment was not authorised. Exactly the effect of this is unclear. It may be that with appropriate counselling A could come to terms with the need to wait till s/he was old enough to make a decision with requiring the court’s consent. The risk of waiting was not a risk that Mushin J was prepared to take. Re Alex: Nicholson C.J., on the other hand, was conﬁdent that Alex understood the risks and side effects of the proposed treatment and that care was taken with respect to the social consequences of Alex becoming male. Given

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what was involved in the application, hormonal treatment rather than surgery, the risks of the procedure were relatively low. However, the Court accepted that the consequences of not authorising the treatment were serious behavioural issues at home and school, distress with body and poor self-image and selfharming behaviour. The extreme behavioural problems Alex had experienced in the past were only alleviated by the sense of relief that something was happening to resolve the problem. Further, studies have shown that the earlier gender-reassignment is commenced, the greater the chance of a favourable outcome (Downs & Whittle, 2000, 199). Downs & Whittle even believe that failure to treat could give rise to an action for negligence (Downs & Whittle, 2000, 202). (vii) The nature and degree of any risk to the child or young person of authorising the proposed procedure or treatment or not authorising the proposed procedure or treatment Re A: The risks attendant to the complex invasive programme of treatment sought to be authorized in A’s case must be considerable, yet they are not discussed or considered in the judgment. There was no consideration of the fact that A may change her mind about her gender re-assignment, and how A would cope in that case. Given the non-compliance with the original medical regime, which is attributable to A’s parents rather than A, it is nonetheless a real possibility that the surgical process would become too much for a child to cope with, and that A would seek to withdraw. In particular, the evidence presented suggests that on-going counselling will be essential to the success of the treatment. Yet there was no consideration of whether this should have been made a condition of approval of the treatment plan. In fact, I would go further and suggest that signiﬁcant psychological and social counselling should have been ordered before any surgery could take place. Further, both the child and the family will need on-going support, and the risk of this not being mandated is a risk to the possibility of the success of the treatment. Re Alex: Apart from the physical risks attendant on the procedure, it was clear on the facts that there would be negative consequences for Alex’s education, residential arrangements and social developmental if authorisation of the proposed treatment were refused. Further, Alex was aware that the staged approach to treatment would mean that should he change his mind about the gender re-assignment, the risks were minimal prior to commencing the second stage at age 16. After that time Alex would have to live with the irreversible effects of the treatment, even if he decided not to proceed with surgery or changed his mind about his gender.

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(viii) The views (if any) expressed by the guardian(s) of the child or young person, a person who is entitled to the custody of the child or young person, a person who is responsible for the daily care and control of the child or young person, and the child or young person himself, to the proposed procedure or treatment and to any alternative procedure or treatment. Re A: All the parties expressed the view that the proposed treatment should be authorized. Because there was no contradictor of these views, about which Mushin J. expressed regret, he gave considerable weight to the opinions of A and her mother. Although A’s father was not involved in the application, Mushin J. was satisﬁed that he agreed with the proposal for medical treatment. The Public Advocate of Victoria, whose role in the proceedings is unclear, also supported the application. Re Alex: In Alex’s case, all parties including Alex supported the proposed treatment. Alex’s mother was estranged from her child and was not involved in the application. Even if she had opposed court authorization, her opinion would carry little weight given her lack of involvement in Alex’s life. Alex’s wishes were realistic and based on a level of understanding about the nature of the treatment proposed. Beyond the factors listed above, there are a number of other factors which I consider to be important in order to protect the right to health of the child or young person. These are: (i) Is the treatment proposed the treatment of last resort Re A: Although there was no serious consideration of any other alternatives, Mushin J. concluded that the six invasive medical processes proposed to be undertaken were treatment of last resort. Re Alex: This is not speciﬁed in Alex’s case, but it is clear on the evidence that the procedure under consideration constituted a treatment of last resort. (ii) The nature of the evidence & the trial Re A: A signiﬁcant problem is A’s case was the scant evidence on which the ﬁndings were made. The only hint of the best interests being applied as a basis for decision-making, comes at the end of the judgment, when Mushin J comments that A would be extremely disappointed if the procedure was not authorized and that if the procedure was delayed until A reached majority there is “a high probability that vast irrevocable damage will have already been done” (16 Fam LR 715, 721). No independent experts were called in support of this ﬁnding and no information about similar cases was presented. The case was presented in an adversarial manner, which limited the judge’s capacity to play a broader role in the proceedings. I am troubled by A’s case, primarily because I do not believe that the evidence presented was sufﬁcient to allow such major invasive treatment

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to be undertaken. In civil cases the standard of proof is the balance of probabilities, and so the combined force of the medical evidence, which was more hesitant than Mushin J saw it to be, and the views of the parties, were together considered sufﬁcient to tip the balance in favour of authorizing the procedure. Judges of the Family Court have the power to appoint a Children’s Representative and to commission the representative to investigate the strength of the child’s wishes and to provide objective evidence relating to the matter under consideration. Unfortunately this did not occur. Re Alex: The decision in Re Alex stands in stark contrast to the decision in Re A. Although what was being sought was controversial, the treatment proposed in Alex’s case is far less invasive than that proposed in Re A. Yet Nicholson CJ gave the matter careful consideration. First, Nicholson CJ held himself to a high standard of evidence: I must be ﬁrmly satisﬁed upon clear and convincing evidence that the proposed treatment is in Alex’s best interests . . . [by] applying the standard established by Briginshaw v Briginshaw (1938) 60 CLR 336. (para 4)

The principle established by Briginshaw v Briginshaw (1938) 60 CLR 336 was stated by Dixon J. (as he was at the time): Except upon criminal cases to be proved by the prosecution, it is enough that the afﬁrmative of an allegation is made out to the reasonable satisfaction of the tribunal. But reasonable satisfaction is not a state of mind that is attained or established independently of the nature and consequence of the fact or facts to be proved. The seriousness of an allegation made, the inherent unlikelihood of an occurrence of a given description, or the gravity of the consequences ﬂowing from a particular ﬁnding are considerations which must affect the answer to the question whether the issue has been proved to the reasonable satisfaction of the tribunal. In such matters “reasonable satisfaction” should not be produced by inexact proofs, indeﬁnite testimony, or indirect inferences. . . . It is often said that such an issue as fraud must be proved ‘clearly’, ‘unequivocally’, ‘strictly’ or ‘with certainty’ . . . This . . . means that the nature of the issue necessarily affects the process by which reasonable satisfaction is obtained. Briginshaw v Briginshaw (1938) 60 CLR 336 at 361

The seriousness of the consequences of the applications for both A and Alex is such that it will affect the fundamental human rights of the child. The evidence in Re Alex was of this standard; the evidence in Re A was not. I believe that Re Alex has precedental value to the effect that the evidence presented in medical treatment decisions must meet the Briginshaw standard. In order to discharge the required standard of proof, Nicholson J allowed the Human Rights & Equal Opportunity Commission to intervene in the proceedings, appointed a Children’s Representative to prepare a report both about Alex and about the procedure contemplated by the application, and had a psychologist on the staff of the Family Court prepare a report. There was an array of

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independent expert medical witnesses with senior professional qualiﬁcations including a consultant psychiatrist who is a specialist in child and adolescent psychiatry, a consultant child and adolescent psychiatrist who also an academic, the Head of the Department of Paediatric and Adolescent Gynaecology and the principal of Alex’s primary school. Further, the court procedure was non-adversarial, which allowed for ‘depth and richness’ in the examination of the evidence. This provided the reader with conﬁdence that the issues for Alex were taken extremely seriously and that no medical treatment which offended Alex’s human rights would be allowed. Beyond the proposed medical treatment being authorized, Nicholson C.J. made a number of ancillary orders to protect the best interests of the child. These orders included the right for Alex’s public identity documentation to record his gender as male, the liberty for any party to re-list the matter and the continuing appointment of the Child Representative as a contact point for Alex as the treatment progresses. In other words, Nicholson C.J. took a broad perspective on the impact of authorizing the treatment, and acted to protect the full range of Alex’s human rights affected by the gender-reassignment process. (iii) Financial Issues Although questions of distributive justice rarely are raised in the context of individual rights, it is not meaningful to accord a right to a child unless one is prepared to facilitate that right, at least on equal terms with adults. In the context of the rights of the child to consent to medical treatment in Australia, discussion must include the ability of children to access the national health scheme, Medicare. (NSW Law Reform Commission, 2004) The costs of the procedures proposed in Re A and that requested Re Alex are high, and one factor that should be taken into account is whether this has been considered and whether it is realistic to authorize the procedures. In Re A no account was taken of the costs of the surgery proposed and whether the state should bear that cost. In Re Alex, Nicholson C.J. considered it signiﬁcant that the ﬁnancial costs of the treatment had been thought through, and that money was available to complete the transition by surgery should Alex decide on this course as an adult (para 221). If there is any doubt at all about whether the Court should allow a child to proceed with expensive medical treatment, the ﬁnancial implications of the decision may be a good reason to delay the decision until the time the child is able to consent, whether this be as a minor or when the age of majority is attained.

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3. Conclusion These cases deal with extremely difﬁcult issues. In all situations the road to establishing the best interests of the child is bumpy. Adolescent health issues are fraught with danger, as the young person is going through a tumultuous time of life and may feel passionate about one course of action which can almost arbitrarily be replaced with an alternative passion. Ensuring the medical treatment decisions are consistent with the right to health, as well as respectful of the other rights of the child, requires measured analysis of the facts presented. Having a court involved in decision-making should add value to the decision to be made. While courts do not have medical expertise, they are experienced at assessing information in a way that parents are not trained to do. Where highly invasive major irreversible medical procedures are concerned, there are great advantages in involving an external disinterested, independent decision-maker. Removed from the emotion of the application, a judge can weigh up evidence and bring to light issues of which the parties were not aware. The decision-making can be measured, and the full implications for the child examined. In medical treatment cases where courts are called upon, the risk of serious abuse of a child’s fundamental human right to bodily integrity is high. As such, a heightened accountability is required.

Notes As per the Director of the Department of Endocrinology provided for the Court and reproduced in the judgment of at 716. 2 Psychologist Anne Vitale comments that the condition would be better referred to as ‘Gender Expression Deprivation Anxiety Disorder’ because: In the DSM III-R (1987) people suffering from gender dysphoria were referred to as “Transsexuals.” When the DSM was updated in 1994, the term “Transsexual” was replaced with “Gender Identity Disorder.” This is not an improvement. The term Gender Identity Disorder implies that one’s physiological sex is correct and that one’s inner sense of gender is disordered or wrong. It is clear that this is not how gender dysphoric individuals perceive their condition. This is evident both in psychologists’ inability to change a person’s sense of gender with therapy and the ready preference of many of these individuals to undergo physical sex reassignment. 3 All information about Alex is derived from the judgment of Chief Justice Nicholson of the Family Court of Australia. 4 The extent to which the Convention is legally enforceable depends on whether a state has a monist concept of law, in which ratifying conventions has the immediate effect of incorporating them into the law of the land, or the dualist incorporation approach, in which international law must be incorporated into law by a further act of the state. In Australia, for example, international law must be incorporated into legislation for it to have domestic effect. It has been held that the Family Law Reform Act had that effect for parts 1

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of Convention on the Rights of the Child: B & B v Minister for Immigration and Multiculturalism and Ethnic Affairs (2003) 173 FLR 360. 5 Moderations to the normal hearing process included: the judge indicating the sort of evidence required; having the hearing in a private conference room around a table, rather than in a court; allowing the presentation of evidence to vary from written to oral; allowing a discussion rather than a sequential process of examination and cross-examination; having more than one hearing date to allow for the search for additional evidence; and the making of transcripts available during the course of the trial. 6 In Rogers v Whitaker (1992) 175 CLR 479 the High Court of Australia held that the standard of care is based on disclosure of the risks which a reasonable person, in the patient’s position, would attach signiﬁcance to it, or if the medical practitioner is, or should reasonably be, aware that the particular patient would be likely to attach signiﬁcance to it. 7 See Re W (A Minor) [1993] Fam 64; Re S (A Minor) (Refusal of Medical Treatment) [1995] 1 FCR 604; Re C (Detention: Medical Treatment) [1997] 2 FLR 180; Re B (A Minor) (Treatment and Secure Accommodation) [1997] 1 FCR 618; and Re M (Child: refusal of medical treatment) [1999] 2 FCR 577. 8 In the context of sterilizing women with intellectual disabilities the Australian High Court held that there was no reason in principle why a person with an intellectual disability would not be able to consent to procedures like sterilisation. Further, the possibility of protection from being sterilised on the basis of potential future capacity would have the effect of averting the cases where women discover that they have been sterilised only when they want to begin a family. See Marion’s Case at 232 & 329. 9 Nothing I have come across deals directly with the problem of an inter-sexed adolescent desiring to undergo gender re-assignment surgery. However, it would seem to me that the evidence of errors in determining the gender of inter-sexed people, and the clear identity crisis A is experiencing, place A in a position similar to a transgender individual. 10 Mushin J comments: “I am very conscious of the evidence that if I require A to wait until he turns 18 there is a very high probability that vast irrevocable damage will have already been done, thereby causing the delay to work against his best interests”: 16 Fam LR 715 at 721. 11 Although Mushin J asserts that “alternative and less invasive procedures have failed” he cites no evidence in support of the claim: 16 Fam LR 715 at 721–2. 12 Mushin J comments: “To his credit the psychologist expressed the view that A’s expectations that everything will be, effectively, rosy if I accede to this application are probably idealistic and that there are still very considerable problems ahead. The psychiatrist wrote in her report that were I to accede to this application A will need very signiﬁcant emotional and psychological support before, during and after any medical procedures. It is not simply a matter of having the operations.” 16 Fam LR 715 at 722. 13 Chief Justice Nicholson left open t he question of whether there remained a role for the Court if the child was found to be Gillick competent: Re Alex at para 173. He did not accept the submission made by the Human Rights & Equal Opportunity Commission that in this situation, the jurisdiction of the court is ousted: Australia, Human Rights & Equal Opportunity Commission Intervention in Re Alex at 1.3(a) & 2.8 available at: . 14 This was conﬁrmed by the High Court in Marion at 255–6 and in P v P (1994) 181 CLR 583. See also the discussion of the Full Family Court in B and B and Minister for Immigration and Ethnic Affairs (2003) FLC ¶93–141 pars 210–247 and in Re GWW and CMW (1997) FLC ¶92–748 at 84, 106– 9, per Hannon J.

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15 This distinction was used as a test in the Canadian case of Re Eve [1986] 2 SCR 388. In Re Jane, Nicholson C.J. adopted this distinction, arguing that therapeutic aims and procedures involve the treatment of some malfunction or disease while non-therapeutic procedures “performed as a matter of routine for religious or social purposes” Fam LR 690 at FLC 760. 16 The application of the ‘but for’ test was proposed by both the Family Law Council & the Human Rights & Equal Opportunity Commission. However the courts have tended to dismiss this test as too blunt an instrument: see P v P (1995) 19 Fam LR 1 at 23. 17 It could well be argued that the distinction is unnecessary because the procedure is in the interest of a third party rather than the child, so establishing that donation could possibly be in the child’s best interest would be difﬁcult. See for example Re GWW and CMW. (1997) FLC ¶92–748. 18 The Family Law Council recommended that if the sterilization is wanted for four reasons, then sterilisation could never be authorized. These reasons are when sterilization is desired for eugenic reasons, for purely contraceptive purposes, in order to conceal or avoid the consequences of sexual abuse, and if menstruation is yet to commence. Sterilization can only be authorized for a person under the age of 18 if the procedure is necessary to save life or to prevent serious damage to the person’s physical or psychological health. The factors to consider in determining whether there is serious damage to a person’s physical or psychological health include the feasibility of less permanent means of contraception, an evaluation of the person’s response to training in menstrual management if this is the problem and the best interests of the child. Sterilisation is only to be authorized as a last resort.

References Alston, P. (1994) The Best Interests of the Child (1994) Oxford, Clarendon Press. Australian Law Reform Commission (2004) Submission to the Attorney-General’s Department Issues Paper on Non-Therapeutic Sterilisation of Minors with a DecisionMaking Disability. Briffa, A. (2003) Discrimination against People affected by Intersex Conditions Report on behalf of Androgen Insensitivity Syndrome Support Group Australia (AISSGA). Submission to the Chief Minister and the Department of Justice & Community Safety of the Australian Capital Territory . Bunney, L. (1997) “The capacity of competent minors to consent to and refuse medical treatment” Journal of Law and Medicine 5, pp. 52–64. Campbell, T.D. (1992) “The Rights of the Minor: as Person, as Child, as Juvenile, as Future Adult” in Alston, P., Parker, S. & Seymour, J. Children’s Rights and the Law Oxford, Clarendon Press. Cole, J. (2003) “Legal Issues on the Treatment of Children with Intersex Conditions” AIGSA Website . Davis, V.J. & Mykitiuk, R. (2001) “The Rights of the Adolescent: The Mature Minor” Journal of the Society of Obstetricians and Gynecologists of Canada 23, pp. 343–345. Downs, C. & Whittle, S. (2000) “Seeking a Gendered Adolescence: Legal and Ethical Problems of Puberty Suppression among Adolescents with Gender Dysphoria” in Heinze, E. (ed.) Children’s Rights: Of Innocence and Autonomy, Massachusetts, Dartmouth. Dworkin, R. (1977) Taking Rights Seriously, London, Duckworth.

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Eekelaar, J. (1986) “The Emergence of Children’s Rights”, Oxford Journal of Legal Studies 6, 161–182. Enright, M. (2003) “Mature” Minors & the Medical Law; Safety First? Cork Online Law Review VII [2003] 1 . Family Law Council (2004) Canberra Practice Direction 2004/9, <www.familycourt. gov.au/>. Family Law Council of Australia (1994) Sterilisation and Other Medical Procedures on Children. Fellowes, M. (2000) “Australia’s Recommendations for the Sterilisation of the Mentally Incapacitated Minor – A More Rigorous Approach?” Web Journal of Current Legal Issues [2000] 2 . Ford, K.K. (2000) “ ‘First Do No Harm’ – The Fiction of Parental Consent to GenderNormalising Surgery on Intersexed Infants” Yale Law & Policy Review 19, pp. 469–488. Freeman, M.D.A. (1983) The Rights and Wrongs of Children London, Frances Pinter. Gooren, L. (2000) “Interview on Gender Dysphoria” ABC Radio National, The Health Report . Human Rights & Equal Opportunity Commission (1989) Submission intervening in P v P at the Full Court of the Family Court of Australia No SY 4034. Jones, M. & Marks, L.A.B. (1994) “The Dynamic Developmental Model of Emerging Rights in Children” International Journal of Children’s Rights 2, pp. 265–291. ——— (2001) “Mediating Rights: Parents, Children & the State” in Jones, M. & Marks, L.A.B. (eds.) Children on the Agenda: The Rights of Australia’s Children, Sydney, Prospect Press. Mendelson, D. (1996) “Historical evolution and modern implications of concepts of consent to, and refusal of, medical treatment in the law of trespass” Journal of Legal Medicine 17, pp. 1–71. Millbank, J. (1995) “When is a Girl a Boy? Re A (a child)” Australian Journal of Family Law 9, pp. 173–181. Minow, M. (1990) Making All the Difference: Inclusion, Exclusion and American Law, New York, Cornell University Press. Mnookin, R.H. (1975) ‘Child custody adjudication: Judicial functions in the face of indeterminacy’. Law and Contemporary Problems 39, pp. 226–293. Nicholson, A., Harrison, M., & Sandor, D. (2001) “The Role of the Family Court in Medical Procedure Cases” in Jones, M. & Marks, L.A.B. Children on the Agenda, Sydney, Prospect. NSW Law Reform Commission (2004) Issues Paper 24 Minors’ Consent to Medical Treatment. Olsen, F. (1992) “Children’s Rights: Some Feminist Approaches to the United Nations Convention on the Rights of the Child.” in Alston, P., Parker, S. & Seymour, J. Children’s Rights and the Law, Oxford, Clarendon Press. Parker, S. (1994) “The Best Interests of the Child – Principles and Problems” in P. Alston (ed.) The Best Interests of the Child, Oxford, Clarendon Press. Spriggs, M.P. (2004) “Ethics and the Proposed Treatment for a 13-year-old with Atypical Gender Identity” Medical Journal of Australia, 181 (6), pp. 319–321. United Nations Committee on the Rights of the Child, (2003) General Comment 4 “Adolescent Health & Development in the context of the Convention on the Rights of the Child” CRC/GC/2003/4. Vitale, A. (2001) “Notes on Gender Role Transition: The Gender Variant Phenomenon – A

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Developmental Review” Gender and Psychoanalysis, An Interdisciplinary Journal, 6 (2), pp. 121–141. Wolfson, S. (1992) “Children’s Rights: The Theoretical Underpinning of the ‘Best Interests of the Child’ ” in Freeman, M. & Veerman, P. The Ideologies of Children’s Rights, Dordrecht, Martinus Nijhoff. Zhou, J.-N., Hofman, M.A., Gooren, L.J., Swaab, D.F. (1997) “A Sex Difference in the Human Brain and its Relation to Transsexuality” International Journal of Transgenderism 1, pp. 1–5. .

Anorexia Nervosa and its Moral Foundations1 SIMONA GIORDANO Lecturer in Bioethics at the Institute of Medicine, Law and Bioethics, University of Manchester

Anorexia: case history Ninety pounds. Finishing the mufﬁn I had for lunch, I sit in the corner of the couch with a blanket covering my body. My dad walks past to the kitchen without noticing me. This happens frequently; he just doesn’t see me. A cool wind blows past stuck with it a scent of emotion. My body cannot get comfortable on the seat, with my bones so cold and poking my skin. I’m lost, hidden in my own off-world. Everything is okay in my off-world; it is warm and comforting. Dinner time. Again? I’m not hungry. I lay in bed, trying to sleep. Tossing and turning, curling up into a fetal ball, I cannot get warm. My legs and arms fall asleep therefore I stretch myself out on my back. I lay there with my hands resting in the slope between my hips and stomach, my arms tight to my side. Each breath, and heartbeat, is slow and mucky. I quickly get up to run to the resort for the third time. Breakfast. I can’t eat now, too nervous. I step on the scale, naked and shivering. Eighty-nine pounds. Not too bad, still have that stomach though! Walking the long path to the building I pant and feel exhausted, wanting to sleep right there on the sidewalk, if only it were warm. I glance in the three-way mirror. I can see my back, my ribs and spine all looking back at me. My butt sagging. I look close to the mirror, my skin translucent. There are purple circles around my eyes. I’ve lost more than half my hair. What’s happened? I can’t eat without staring at the food. I pick it apart, and push it around my plate. I can’t keep up with all the rules I have for myself. I constantly break them anyway. I’m horrid even to myself. I did this, I deserve the punishment. It’s all my fault. How [the hell] will I tell my parents? I sit on the cold hard metal medical bed with a sheet of paper covering it, rehearsing over and over what I’ll say to the doctor. A woman comes in to Michael Freeman (Ed.), Children’s Health and Children’s Rights, 149–160. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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weigh me and take my blood pressure. One hundred pounds. “When was your last period?” She asked. “Eight months ago.” She proceeded to ask if I had been pregnant or sick. “God, you’re not throwing up are you?” Of course not, that never worked. I sit and wait more for the doctor, rehearsing again what I’d tell her, feeling quite defeated by the comments of the previous woman. Finally she comes and tells me, yes, it’s Anorexia Nervosa.

Introduction This is one of the innumerable stories published every day in the web and in the media. Eating disorders, a rarity about 30 years ago, have now become an epidemic (Gordon, 1991, p. 39), and everyone in our society has or has had a relative, or a school mate, or a friend, or a daughter, with anorexia or bulimia.2 In common discourse, eating disorders are often seen as the result of the pressure to be thin, operated by the media. Magazines and the media would propose/impose an unnatural model of beauty and young women would fall in the trap of eating disorders in the effort to emulate their favourite top models. In this paper I will argue that eating disorders are not the products of fashion, but of some moral values that are strongly embodied in the western culture. In other words, it is not fashion that shapes our bodies, but morality.

Eating disorders: an epidemic that affects many children About 1% of young women are diagnosed as having anorexia, and about 17% of college-aged women are diagnosed as having bulimia. Of these, between 30 and 80% have had a history of anorexia. (DSM-IV TR, 2000, 307.1; 370.51). The statistics obviously only refer to people who seek help and who meet the diagnostic criteria. However, there are a number of “silent sufferers”, who will never seek professional help and who will consequently not appear in clinical estimates, and there are people who have eating disorders or a difﬁcult relationship with their body and with eating, but who do not meet the diagnostic criteria. If these are taken into consideration, the numbers rise enormously. According to the Eating Disorders Association, 1.15 million people currently suffer from eating disorders in the UK . Childline Support (see ), active in the UK helps up to 1,300 children with eating disorders every year. Eating disorders might affect anyone, including women up to the menopause. However, according to the International Classiﬁcation of Diseases, the

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disorder “occurs most commonly in adolescent girls and young women, but adolescent boys and young men may also be affected, as may children approaching puberty . . .” (ICD-10, 1992, F 50). Other authoritative studies conﬁrm that eating disorders mainly occur during adolescence (Bruch, 1974, pp. 262, 264) (Ward and Gowers, 2003, pp. 103–20, 115). Sufferers are mainly women between 16 and 19 years old (Selvini Palazzoli et al., 1998, p. 20). The disorder is often found in secondary schools, colleges and campuses (Faccio, 1999, p. 30). Some of the most relevant and controversial legal cases in the UK concern minors (Re W [1993] Fam 64; Re C [1997] 2 FLR 180, thought by no means all do). Anorexia is by far the most lethal among psychiatric disorders. Mortality associated with the disorder is up to 20% (Grifﬁths and Russel, 1998, p. 127). Most deaths result from suicide. This gives an idea of the unbearable suffering that people with eating disorders experience. Eating disorders are a complex syndrome and their causes are not fully understood. This makes it extremely difﬁcult to help someone in the grip of an eating disorder.

One common explanation: the role of the media In common discourse, anorexia and bulimia are often regarded as the effect of the pressure operated by the media to be thin. The media would suggest that there is an equation between thinness and beauty, and that in order to be beautiful, especially as a woman, you need to be thin (or very thin). People, in particular young women, would start dieting, and being reinforced by the positive remarks of their peers, would continue to diet up to the point where they become unable to control themselves and they would become anorexic. A similar argument has been proposed in medical settings. The British Medical Association, in a report entitled Eating Disorders, body image and the media (British Medical Association, 2000), suggested that [t]he media play a signiﬁcant role in the causation of eating disorders, where they can ‘trigger’ the illness in vulnerable individuals, by suggesting that being ‘thin’ means being successful.

The British Medical Association feared that some forms of advertising may be contributing to an increase in the incidence and prevalence of anorexia nervosa .

Indeed, magazines are replete with very thin and super-thin models, and it is sometimes difﬁcult to differentiate between a model and an anorexic, as the images below testify.

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Picture of a model

Picture of an anorexic Although the fashion might have an impact on people’s perception of themselves, the relationship between fashion and media on the one hand, and eating disorders on the other, is not a causal one: “the media are responsible for eating disorders”; “anorexia is a product of contemporary fashion”. Instead both fashion and people with eating disorders express a common phenomenon: the preference for thinness. In other words, fashion and the media are not a cause but an effect. The real causes for eating disorders, as we shall see, are found in morality. After the British Medical Association published its report on anorexia, the director of a magazine complained that the blame for their use of super-thin models should not lie with them. He pointed out that the reason why they use skinny models is that they are what the general public want to see. People generally buy more the magazines where skeleton-like bodies are pictured. The supply satisﬁes the demand! (The Guardian, May 31, 2000, <www.guardian. co.uk/Archive/Article/0,4273,4023818,00.html>. If it is true that both magazines and anorexia are an expression of the widespread taste for thinness or extreme thinness, we should ask: why do people in our society like these women? What is attractive in thinness? Before we answer this question, we need to discredit a common (but partly false) belief.

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The ancient myth of thinness Many people mistakenly believe that the mania of thinness is a recent phenomenon. The mania of thinness has instead obsessed western women for a long time. Medical books of the 1800s indicate that women of that time dreaded fat. Beauty manuals and magazines of the time present fat as an element that spoils the beauty of forms and female grace. Fat around the waist was considered as the most abhorrent. Hence the use of tight lacing and corsets, which control and castigate female fat and which allow the woman to display a “wasp-waist”. Although it was known that tight laces and corsets might be detrimental to health, a slender waist was imperative and the practice of tightening females’ stomachs was commonplace. There is also evidence that girls and women used methods to control their body weight, such as drinking vinegar and lemon juice, which were thought to help to lose weight (Krugovoy Silver, 2003, p. 53). An interesting parallel should be drawn here between these practices and those employed by people with eating disorders, who typically use laxatives and diuretics as an aid to diet, in order to lose weight or maintain underweight. In both cases the woman has to castigate herself in order to conform to the ideal of female grace and beauty. An overview of Victorian literature also shows the link between female beauty and thinness/lightness. [T]he prototypical heroine of nineteenth-century ﬁction . . . almost inevitably displays a tiny appetite: Dickens’s Little Dorrit, Eliot’s Dorothea Brook, and Brontë’s Jane Eyre are only three of the most well-known heroines deﬁned in part by their light, pale bodies. In Ruth, Elizabeth Gaskell establishes her fallen heroine’s fundamental innocence and passionlessness with repeated allusions to her slimness, her ‘little ﬁgure’, and ‘beautiful lithe ﬁgure’ (Krugovoy Silver, 2003, p. 10).

The preference for a thin female body persists through the 20th Century. Studies of “Miss America” and of the magazine Playboy since the 1960s have registered decreased weight and decreased curves through the 60s and 70s. During the 70s the “tubular” androgynous body was imperative (Gordon, 1991, p. 78). Why has Western society for a long time attached high aesthetic value to thin, super-thin or otherwise “castigated” women?3 The answer to this question is to be found in a particular conception of the human person and in a morality that is closely related to that conception. The conception of the human person I am referring to is the idea that persons are a composite of body and mind (or reason or spirit) as two ontologically separated entities. This metaphysics may be regarded as one of the essential foundations of eating disorders.

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Dualistic conception of the human person: origins Most people seem to assume that human beings have a body and a mind (otherwise called reason, soul, spirit, intellect). The dichotomy of mind and body probably originated in ancient Greece, with Orphism (Reale and Antiseri, 1984, vol. I). Orpheus was a Greek (probably legendary) poet. According to Orphism, the soul is a demon (da¤mvu), a divine principle that fell into the body because of an original sin. The soul is immortal and reincarnates in different bodies, until the rituals and practices of the “Orphic life” put an end to the cycle of reincarnations (metempsychosis) and the soul is set free. Orphism, in contrast with original Greek naturalism, for the ﬁrst time presented physical life as something that needs to be transcended. This had a major impact on the whole Greek culture, including philosophy and science. This stream of thought is found in the School of Pythagoras, in Empedocles, in Plato (Reale and Antiseri, 1984, p. 112) and in Aristotle (Aristotle, 1986, iii 4, 429a9–10; cf. iii 3, 428a5; iii 9, 432b26; iii 12, 434b3) (Reale and Antiseri, 1984, pp. 17–20; p. 406). The metaphysical distinction was clearly accepted in Christianity, in the various interpretation of Christian theology (such as the Patristic doctrines and the Scholastic philosophy) and in the whole medieval western philosophy and theology. Many modern philosophers (remarkable in this sense are the speculations by Descartes and Kant) adopted this view. And also in literature we ﬁnd examples of this dualistic conception of the human person. Emily Dickinson, for example, wrote: I do not care for the body, I love the timid soul, the blushing, shrinking soul; it hides, for it is afraid, and the bold obtrusive body . . . (Letter No 39) (Johnson, 1958, p. 103). [W]ho cares for a body whose tenant is ill at ease? Give me the aching body, and the spirit glad and serene, for if the gem shines on, forget the mouldering casket (Letter No 54) (Johnson, 1958, p. 140) (Giordano, 2002).

This dichotomous conception of the human being is still widely accepted. Philosophers like Peter Singer (Singer, 1995), John Harris (Harris, 1992), Derek Parﬁt (Parﬁt, 1976, pp. 143–63), H. Tristram Engelhardt (Engelhardt, 1996), argue that the human being in its “complete” or “higher” form, must possess “mental” capacities – self-awareness, and so on, and that beings that do not possess the “mental” capacities are not “persons”. Having a body is not enough: it is the mind (or reason, or rationality) that gives us our special status. The deﬁnition of death which is currently accepted in US and in Europe, “brain death” (= cortex + brain stem), (Department of Health, 1998; Re A

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[2002] 3 Med LR 303) reﬂect the same concept: what we consider as a “person” must have “mental” capacities. That we have “a reason” or “a mind” seems so self-evident to many that often little justiﬁcation is offered (Ryle, 1978, pp. 13–14). I will not discuss here whether or not this philosophical argument is valid. The important aspect, the one that has major impact on eating disorders, is that this metaphysics is not merely descriptive, but normative. The next section will show how this metaphysics contributes to the articulation of a certain moral framework which is determinant to eating disorders. The “baseness” of the body and eating disorders In the mind-body split, the body is generally regarded as either “insigniﬁcant” or “inferior” or both. This ideology is one of the determinants of eating disorders. Within an ethic that demands the submission of the “physical”, it is obvious that control over one of the most pressing physiological impulses, hunger, is praised. Fasting has been associated (and is still associated) with ideas of control over the chaotic passions of the body, and the person who is able to exert control over hunger has often been presented as an example of moral integrity (Bruch, 1974, p. 25) (Weber, 1976, p. 166) (MacSween, 1995, p. 211). Moreover, fasting has been associated (and is still associated) with the idea of purity. Fasting is “detox”; this of course means that eating is a form of pollution. Fasting “cleanses up” the organism. Being empty of food is being clean. By simply navigating on the web, one ﬁnds countless advertisements that offer fasting as a form of puriﬁcation, both physical and spiritual. The advertisements invariably suggest a connection between emptiness (freedom from food), cleanness, freedom from diseases and purity (where purity is both physical and spiritual). In the following advertisement, for example, fasting is presented as a panacea for every cell. Detoxiﬁcation is a normal body process of eliminating or neutralizing toxins through the colon, liver, kidneys, lungs, lymph and skin. Fasting is the world’s most ancient and natural healing mechanism. Fasting triggers a truly wondrous cleansing process that reaches right down to each and every cell and tissue in the body

Another website, advertising another wellness centre, contains a number of case studies on the beneﬁts of fasting. Tim allegedly underwent 49 days fasting, (31 days on pure water; 18 on restricted coconut water and pure water). The following is an extract from his testimonial:

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I won’t relate exactly what happened to me. Nothing that I expected to happen, happened; the things I least expected to happen, did. If you hear my stories, you might expect the same things to happen to you. I can tell you of my tongue’s coat changing and parting like the red sea, moles falling off, grey hairs vanishing, warts disappearing, knees and entire leg bones straightening, eyesight going wild then improving, a little toenail appearing for the ﬁrst time in my life, . . . And who knows what miracles occurred in my kidneys, my spleen, my prostate, etc., etc.? . . . Generally though, I am amazed at the overall rejuvenation that has occurred. My hair and eyes are shining. My brain feels like it is being fed properly (for the ﬁrst time) – in essence, I am substantially cleverer. I am calmer. I am happier. I am wiser. My skin is as taught as rubber. I sat next to a super-handsome 19 year old Olympic triathelete in the plane home and the stewardess asked if we were brothers as “we looked so alike”. (I just had to tell you that.) Tim

These advertisements reveal a mixture of different elements, some of which may help understanding of eating disorders. Through fasting the person achieves “purity” (physical, spiritual or both). “Puriﬁcation” from food is good at all levels: is good for the body (cure of diseases; purity from the pollution of food) and good for the spirit (“My brain feels like it is being fed properly (for the ﬁrst time) – in essence, I am substantially cleverer. I am calmer. I am happier. I am wiser”). Control of the body is “will power”, physical spiritual catharsis, demonstration of virtue and moral character. We may look at eating disorders in the light of this. Control of food intake is central to eating disorders, together with compensatory practices, such as self-induced vomiting, abuse of laxatives and diuretics. Interestingly, these are also called “cathartic” practices. These are practices through which the person puriﬁes herself from food. The eating disordered person has accepted the idea that being empty from food is being “clean”, an idea which is not spread by fashion, but which has its origins in metaphysics and morality. Control of body impulses and needs is a way in which the person afﬁrms her moral purity: she puriﬁes herself and also afﬁrms her moral character – she is able to control her body with her will.4, 5 Saying that the eating disordered person wants to be thin and to emulate top models is a disgraceful minimisation of the motives and background of anorexic behaviour. At the basis of the admiration for a thin body, or an empty body there are moral values: self-control, perfectionism, purity, intellectual achievement, will power and hard work, a cluster of values with a long history (Duker and Slade, 2003, pp. 108–110; pp. 121–22; p. 130) (Vandereycken and Van Deth, 1994, chapters 2 and 11) (Lawrence, 1984, pp. 32–35) (Bruch, 1974 p. 25). This is why the more people with eating disorders become emaciated, frail and vulnerable, the more they go on fasting, the more powerful, cleansed, pure they feel.

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As Duker and Slade report: There are three underlying characteristics that are particularly marked in any sufferer. These are an intense morality, an extreme sensitivity, particularly to the needs and feelings of others, and a profound sense of worthlessness . . . they are completely rule-bound . . . They apply their moral rules to food, to eating, to exercising as to everything else in their life . . . sufferers typically adhere very strongly to a cluster of values that centre on hard work, self control, personal responsibility, high standards of achievement, deferred gratiﬁcation, not receiving rewards that have not been earned, not receiving where this is not deserved . . . these values and aspirations can be applied to food and body regulation as effectively as they can be applied to work, educational achievements, career success, personal relationships and of course sports, where encouragement for these values to be extended to body regulation is explicit . . . Anorexics, bulimics, all those striving to get their body ‘into shape’ . . . are people who place very high value on control . . . it is the continuity between the sufferers’ moral attitude and that of their social group or culture that again explains why the condition can be lethal (my emphases) (Duker and Slade, 2003, pp. 108–110).

The values that “shape” eating disorders reﬂect widely accepted views of the human person and moral virtue. Many people, including anorexics, believe that there is something moral in the capacity to control this chaotic and dangerous accessory that is our body, and something immoral in the incapacity to control it. In a context that denigrates the body, fatness as abundance of body – as “corpulence” (from the Latin corpus = body + ulentus = abounding in) cannot be considered “beautiful” – because it is not acceptable. Fatness is not simply ugly (likewise, it is not simply “unhealthy” or “bad for you”): fat it is depreciable as the synonymous of corporeal vices, indolence, weakness, moral collapse (MacSween, 1995, pp. 249–50). Why women? It may be asked why this morality affects women, rather than men, at least in this particular way. If the morality is one and for all, why do mostly women develop eating disorders? The idea that eating disorders are a “female” problem is partly misleading. The population of male sufferers is increasing (Andersen, 2002, pp. 188–92) (Fichter and Krenn, 2003, pp. 369–83), and dynamics akin to anorexia inform male behaviour in a number of other areas, ranging from sports (a classic example is the body-builder) to work activities. People who believe that achieving is proof of adequacy (Duker and Slade, 2003, p. 132) will adopt behaviours that resemble the ﬁght for control operated by the anorexic. This ﬁght may be operated at work (ﬁght for intellectual-social achievements), in the gym (ﬁght for bigger muscles) or at the dinner table (control of food intake), but with similar dynamics. There may be a number of social factors that might explain why women

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become anorexic, in response to certain moral values, whereas men become, for example, obsessive body builders or obsessive workers. These social factors are related to gender stereotypes, which for example link the value of men with strength and the value of women to frailty and a-corporeality. In order to understand the different response in females and males we should analyse gender stereotypes that have crystallised in this particular society. Although such analysis goes beyond the scope of this paper, the metaphysics outlined above, with its normative functions, can in part explain anorexia, and provides a better explanation than the one that refers to the media.

Conclusions In common discourse, anorexia is often viewed as a response to the pressure to be thin operated by the media. I have argued that the (omni) presence of ultra-thin models does not explain the disorder. It rather shows that in our society (western society) we are attracted to thinness. This raises the question as to why we are attracted to thinness. Many people believe that this attraction to thinness is a contemporary phenomenon. I have shown that dread of fat was common in previous eras and that the strait jacket of diet has for a long time been considered as an imperative for women. The attraction to thinness is not a phenomenon merely linked to “fashion”. Thinness becomes valuable in a determined socio-cultural context, for what it symbolises. In the socio-cultural context of the Western world, it symbolises the submission of the body to the mind. Within a context that praises the submission of the body, with its impulses and needs, it is clear that the control of one of the most pressing physical needs, the need to eat, is considered as one of the highest expression of moral rectitude. Being thin is thus not merely beautiful: it is valuable. Thinness indicates the transcendence of the body. It is the emblem of the person’s self-control and discipline. Concomitant denigration of fat reﬂects the low conception of the body, which is invariably found in all eras in western culture. The claim that anorexia nervosa is an effect of the negative inﬂuence operated by the media is thus a disgraceful minimisation of the complex psychological, social and cultural backgrounds that inform the sufferers’ behaviour. The ﬁght against fat is a ﬁght for control, a crusade for moral afﬁrmation, for integrity and perfection. The media are a scapegoat, I believe, which we are rather inclined to blame because, otherwise, we are bound to question ordinary ideas of what type of beings we are, and to accept that there is something poten-

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tially very dangerous and even lethal in ordinary concepts of personhood and related moral values.

Notes An earlier version of this paper was presented at the FAB/IAB World Congress of Bioethics, Sydney, November 2004. 2 Binge eating and obesity may also be regarded as eating disorders. I will for the sake of convenience refer to anorexia and bulimia, but what is said is valid for the preoccupation with thinness, whether or not the person becomes emaciated as a result of that preoccupation. 3 One could argue that thinness is preferable to fatness because it shows the forms of the female body, which fat would instead cover. However, the extreme thinness that characterises anorexia and contemporary models does not reveal, but instead obscures, female forms. To the same extent as very fat bodies are similar to one another (so that individual forms are masked by fat), extremely thin bodies are similar to one another (the forms are eliminated). 4 I am not claiming that this process is fully conscious, and that anorexics fast because they think, at a conscious level, that this will make them morally virtuous. What I am arguing is that the preference for a thin or super-thin body (and hence anorexia) makes sense if one considers this particular moral background and the metaphysics of the human person which underlies and supports it. The level of awareness that anorexics may have of the importance of this philosophical and moral background in the articulation of their behaviour is a different issue, and something that may be better established in clinical settings. 5 One may also object that anorexics’ thinking is impaired by food deprivation and therefore they cannot be acting out of reasons. Whereas it is true that food deprivation may impair mental functioning, the issue still arises as to why people start fasting in the ﬁrst instance and get to a stage of food deprivation that compromises thinking and reasoning, and the arguments of this paper offer some elements for reﬂection as to the reasons why people adopt harmful and apparently unintelligible eating behaviours. 1

References Andersen, E.A. (2002) ‘Eating Disorders in Males’ in Fairburn, G.C. and Brownell, K.D. (eds.) Eating Disorders and Obesity, London, The Guilford Press. Aristotle (1986) De Anima (On the Soul), Harmondsworth, Penguin. ——— (1998) Metaphysics, London, Penguin. British Medical Association (2000) Eating Disorders, Body Image & The Media, London, BMJ. Bruch, H. (1974) Eating Disorders: Obesity Anorexia Nervosa and the Person Within, London, Routledge and Kegan Paul. Department of Health. A Code of Practice for the Diagnosis of Brain Stem Death. London: Department of Health, 1998. DSM-IV-TR (2000) Diagnostic and Statistical Manual of Mental Disorders. Text Revision. Washington DC, American Psychiatric Association.

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Duker, M. and Slade, R. (2003) Anorexia Nervosa and Bulimia: how to help, BuckinghamPhiladelphia, Open University Press. Engelhardt, H.T. (1996) The Foundation of Bioethics, New York-Oxford, Oxford University Press. Faccio, E. (1999) Il Disturbo Alimentare, Modelli Ricerche e Terapie, Roma, Carocci. Fichter, M. and Krenn, H. (2003) ‘Eating disorders in males’ in Treasure, J. Schmidt, U. and Van Furth, E. (eds.) Handbook of Eating Disorders, Chichester, Wiley. Giordano, S. (2002) ‘Qu’un soufﬂe de vent . . .’, Medical Humanities, 28(1) pp. 3–8. Gordon, R. (1991) Anoressia e Bulimia, Anatomia di un’Epidemia Sociale, Milano, Raffaello Cortina. Original English version (1990) Anorexia and Bulimia, Anatomy of a Social Epidemic, Oxford, Blackwell. Grifﬁths, R. and Russel, J. (1998) ‘Compulsory treatment for anorexia nervosa patients’ in Beumont, P.J.V. and Vandereycken, W. (eds.) Treating Eating Disorders: ethical, legal and personal issues, New York, New York University Press. Harris, J. (1992) The Value of Life, London, Routledge. ICD-10 (1992) International Classiﬁcation of Diseases ICD-10, Geneva, World Health Organisation. Johnson, T.H. (1958) The Letters of Emily Dickinson, Cambridge, Harvard University Press. Krugovoy Silver, A. (2003) Victorian Literature and the Anorexic Body, Cambridge, Cambridge University Press. Lawrence, M. (1984) The Anorexic Experience, London, The Women’s Press. MacSween, M. (1995) Anorexic Bodies: a Feminist and Social Perspective, London, Routledge. Selvini Palazzoli, M., Cirillo, S. Selvini, M., Sorrentino, A.M. (1998) Ragazze Anoressiche e Bulimiche, la Terapia Familiare, Milano, Raffaello Cortina Editore. Parﬁt, D. (1976) ‘Personal Identity’ in Glover, J. (ed.) The Philosophy of Mind, Oxford, Oxford University Press. Reale, G. and Antiseri, D. (1984) Il Pensiero Occidentale dale Origini a Oggi, RomaMilano, La Scuola. Ryle, G. (1978) The Concept of Mind, London, Penguin, ﬁrst published in 1949. Singer, P. (1995) Rethinking Life and Death, Oxford, Oxford University Press. Vandereycken, W. and Van Deth, R. (1994) From Fasting Saints to Anorexic Girls, the History of Self-Starvation, London, Athlone Press. Ward, A. and Gowers, S. (2003) ‘Attachment and Childhood Development’ in Treasure, J. Schmidt, U. and Van Furth, E. (eds.) Handbook of Eating Disorders, Chichester, Wiley. Weber, M. (1976) The Protestant Ethic and the Spirit of Capitalism, London, George Allen & Unwin.

Short Changed? The Law and Ethics of Male Circumcision MARIE FOX AND MICHAEL THOMSON Law School, Keele University

Introduction Routine neonatal male circumcision has generally failed to excite medico-legal attention. Notwithstanding recent debates in the ethical literature, notably in special issues or symposia in the Journal of Medical Ethics (2004, 30) and American Journal of Bioethics (2003, 3), the law has yet to engage seriously with this issue. In a forthcoming contribution to an emerging medico-legal debate we have suggested that neglect of this issue is partly attributable to the way in which routine infant male circumcision (and its attendant effects and risks) is typically characterised in opposition to female circumcision for rhetorical and political reasons (Fox and Thomson, 2005). The result is that, while female circumcision is constructed as morally and legally unacceptable within a civilised society, male circumcision is characterised as a standard and benign medical practice. In this article our focus turns to the related failure to engage in a full cost/beneﬁt analysis of the practice and the harm it causes to boy children. This article starts by outlining, brieﬂy, how routine male circumcision has come to be debated in contemporary ethical, professional and (the limited) legal literature. Particular attention is devoted to the privileging of parental choice, notwithstanding documented medical risks and the absence of conclusive evidence of medical beneﬁt. We suggest that the medico-legal failure to take seriously the risks involved is understandable if we recognise that the concept of harm is inherently ﬂuid and that pain (particularly where it is experienced by infants) is often incapable of articulation. This insight means that it is crucial to address the ways in which speciﬁc harms are contextualised. We explore this process of constructing harm through a consideration of the law’s response to circumcision in the leading case of Brown and in the Law Commission’s recommendations on circumcision in its report Consent in the Criminal Law. By problematising the legal reasoning in these English legal texts we seek to contest legal orthodoxy which construes the decision to circumcise a male infant as a legitimate parental decision. We also suggest that this prevailing legal consensus is largely a product of the way in which the practice has historically emerged. Thus we trace a brief Michael Freeman (Ed.), Children’s Health and Children’s Rights, 161–181. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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history of neonatal male circumcision, focusing on the early justiﬁcations for the procedure and interrogating the types of harm that were constructed or imagined in these justiﬁcations. In these medical histories, the emphasis is placed on harms risked by not circumcising rather than the risks inherent in the procedure. Importantly, such justiﬁcations are based on matters of hygiene coupled with the control of disease, madness and masturbation. Although clearly spurious, as we shall highlight, echoes of these justiﬁcations recur in current debates and continue to carry potent symbolic resonance. Our contention is that in order to effect a shift in attitudes to the practice, the early justiﬁcations need to be articulated and challenged, and this has to be coupled with an emphasis on the real risks of the procedure. Before continuing, it is important to qualify what bodies we are talking of. In this paper our primary concern is with Anglo-American bodies. More speciﬁcally, we focus on the neonatal body subjected to this procedure for social (rather than legitimate medical) reasons.1 Other European/industrialised nations do not share the same history of routine neonatal circumcision2 (although Canada and Australia too have historically had high rates of neonatal circumcision (Waldeck, 2002; Queensland Law Reform Commission, 1993)). As well as geographical speciﬁcity, there is also a chronology to note, since the shared history of routine circumcision in these countries has not endured. Thus, based on Army records, it has been estimated that before World War II 50% of working class and 85% of upper class men in England were circumcised (Gollaher, 1994: 25; see also Gairdner, 1949). Whilst US rates remain high, in the UK the numbers, though signiﬁcant, are now comparatively small. Estimates suggest that approximately 30,000 procedures are performed annually in the UK, most on young children (Williams and Kaplila, 1993a); and 1993 ﬁgures indicate that 5–6 per cent of British men were circumcised (Williams and Kaplila, 1993b).3 With the introduction of the NHS, procedures that could not be demonstrated to be clearly medically efﬁcacious were no longer to be provided by the state.4 Whilst this process has had mixed success, circumcision was one procedure to be dropped early in the life of the NHS. The results under a private insurance system have been quite different, although available statistics do appear to suggest a decline in the recent incidence of circumcision in the US. The American Academy of Pediatrics estimated that, in 1999, 85 percent of male newborns were circumcised; (American Academy of Pediatrics, 1999) while statistics for the following year record a rate of around 65 percent (National Center for Health Statistics, 2001). Some commentators have argued that a downward trend in the statistics points to routine circumcision being experienced by only a minority of newborns within a generation (Miller, 2002). The picture is, however, more complicated that this suggests, since the statistics fail to display a linear decline, are affected by under reporting, and do not reﬂect regional and racial differences (Waldeck, 2002).

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Contemporary Medico-Legal Debates Ritual circumcision of male infants as religious and cultural practice is lawful in this country. . . . We allow parents to agree to a relatively minor, albeit irreversible procedure, in the interests of observing religious freedoms in the upbringing of their male child but that freedom stops short at the seriously invasive procedure on young girls (Bridge, 2002: 279).

Caroline Bridge’s statement characterises most contemporary legal responses to the issue of male circumcision. Bridge constructs a simpliﬁed oppositional relationship between male and female circumcision whereby male circumcision is self-evidently different from the practice of female circumcision. As we have argued elsewhere, this form of response contributes to the negation of male circumcision as an issue within medico-legal literature (Fox and Thomson, 2005). Here we want to consider a related aspect of the contemporary debate. A notable feature of work on female circumcision is the attention paid to the harms and risks inherent in the procedure(s). In sharp contrast, and related to the rhetorical strategy we have noted above, the harms inherent in male circumcision are generally downplayed, as in Bridge’s essay, with risks being minimised as part of a strategy that privileges parental choice and freedoms. A special issue of the American Journal of Bioethics in 2003 further illustrates this discursive pattern. The issue’s lead article ‘Between Prophylaxis and Child Abuse’ purports to offer a third way within the polarised circumcision debate (Benatar and Benatar, 2003). Stating that ‘the ethics of a surgical procedure cannot be assessed independently of whatever harms and beneﬁts it does or does not have’ (Benatar and Benatar, 2003: 36), the authors, Michael and David Benatar, provide a detailed analysis of the numerous studies that have aimed to validate or challenge the various prophylactic justiﬁcations that have emerged over time. Signiﬁcantly, the authors conclude that none of the scientiﬁc evidence ‘is anywhere near conclusive’ (Benatar and Benatar, 2003: 42). Yet, notwithstanding their stated commitment to a full cost/beneﬁt analysis, the authors dedicate just two paragraphs to pain, and only a single paragraph to consideration of possible complications (Benatar and Benatar, 2003: 38). In relation to costs, they conclude that ‘the most signiﬁcant cost of neonatal circumcision is the pain that accompanies it. . . . Where [anesthesia] is used, this major cost can be eliminated or at least signiﬁcantly reduced’ (Benatar and Benatar, 2003: 42). Other risks involved are even more cursorily dealt with. Conversely, the authors argue that scientiﬁc opinion suggests medical beneﬁts stem from circumcision. For instance, they propose that circumcision may offer some protection against urinary tract infection (Benatar and Benatar, 2003: 39). Yet these proposed beneﬁts are not quantiﬁed in a way whereby they can be measured against quantiﬁable risks (such as the risks of haemorrhage,

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sepsis, ulceration or laceration of the penis or scrotum, psychological complications (Benatar and Benatar, 2003: 92–6),5 or a morbidity rate of one in 500,000 (Benatar and Benatar, 2003: 42)). Ultimately, then, the Benatars themselves fail to provide an adequate cost/beneﬁt analysis and their ‘third way’ amounts simply to an argument for parental choice based on minimising the inherent risks of infant circumcision. Downplaying the risks permits the authors to embrace the cultural and social beneﬁts that might ﬂow from its exercise. Thus, they state, ‘if we are correct that no clear and signiﬁcant medical beneﬁts derive from circumcision, there still might be other kinds of beneﬁts’ (Benatar and Benatar, 2003: 44). They conclude: [W]e think that neonatal circumcision cannot unequivocally be said to yield a net medical gain or loss. In other words, it is not something that can be said to be routinely indicated, nor something that is routinely contra-indicated. It is a discretionary matter. The decision whether or not to circumcise a child should thus be made by the parents, who, within certain limits, are entitled to employ their own value judgments in the furtherance of their child’s best interests. These limits are not exceeded in most decisions about neonatal circumcision, given the nature of the medical evidence (Benatar and Benatar, 2003: 42).

As we have noted, a similar discursive strategy characterises the wider circumcision debate, as is evidenced by the recently revised BMA guidance to doctors (BMA, 2003). It too foregrounds the need for a cost/beneﬁt analysis and, signiﬁcantly, within this it highlights the contested nature of the claimed beneﬁts. At various points evidence for the supposed beneﬁcial effects of circumcision is described as ‘equivocal’ (BMA, 2003: 2, 4) ‘inconclusive’ (BMA, 2003: 4), ‘not convincingly proven’ (BMA, 2003: 5), ‘contradictory’ causing ‘signiﬁcant disagreement’, lacking consensus and, ultimately, ‘insufﬁcient’, leading to the conclusion that ‘evidence concerning the health beneﬁt from non-therapeutic circumcision is insufﬁcient for this alone to be justiﬁcation’ (BMA, 2003: 7). Yet, while this is coupled with a recognition that there are inherent ‘medical and psychological’ risks in the procedure (BMA, 2003: 5), the dominant message remains that parental beliefs should be respected, despite not being grounded in claims to health beneﬁts: The medical harms or beneﬁts have not been unequivocally proven but there are clear risks of harm if the procedure is done inexpertly. The Association has no policy on these issues. Indeed it would be difﬁcult to formulate a policy in the absence of unambiguously clear and consistent medical data on the implications of the intervention. As a general rule, however, the BMA believes that the parents should be entitled to make choices about how best to promote their children’s interests, and it is for society to decide what limits should be imposed on parental choices (BMA, 2003: 3).6

As such, while the BMA’s recognition of both the equivocal nature of the claimed beneﬁts and the clear risks of harm (although this is subsequently min-

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imised) may be interpreted as a progressive position, it nonetheless continues to construct male circumcision as an expression of parental privilege. This downplays both the pain experienced by the neonate (see Benatar and Benatar, 2003: 37–8 and accompanying references; Warnock and Sandrin, 2004) and the fact that while complication rates from routine circumcision are low, the chances of these complications being mutilatory, infective or haemorrhagic are high (Willliams and Kaplia, 1993b; Gerharz and Haarmann, 2000). Indeed, complications are potentially catastrophic, since death, gangrene, and total or partial amputation are known adverse outcomes (Hodges et al., 2002). This pattern of reasoning is also evident in Re J (Re J (A Minor) (Prohibited Steps Order: Ciricumcision), and Re J (Speciﬁc Issue Orders: Muslim Upbringing & Circumcision) [2000] 1 FLR 571; (2000) 52 BMLR 82, the only case where UK courts have directly considered circumcision). A similar conclusion has been reached in the Court of Appeal in Re S (children) (Specific Issue: Religion: Circumcision) [2005] 1 FLR 236. The case concerned a ﬁve year old boy – ‘J’ – who following his parents’ separation lived with his mother, a non-practising English Christian. His father was a non-practising Turkish Muslim, who wanted J to be circumcised so as to identify him with his father and conﬁrm him as a Muslim. Having considered the factors relevant to J’s upbringing, the Court of Appeal concluded that J should not be circumcised because he was not, and nor was he likely to be, brought up in the Muslim religion. Instead he had “a mixed heritage and an essentially secular lifestyle” and was unlikely to have such a degree of involvement with Muslims as to justify circumcising him for social reasons. In these circumstances, Wall J held that the boy was unlikely to derive any social or cultural beneﬁt from circumcision: [T]he mother, as J’s primary carer, would ﬁnd it extremely difﬁcult to present the question of circumcision to J in a positive light, and unlike ritual circumcision occurring in the context of a Muslim family . . . J’s circumcision would be likely to be surrounded by tension and stress. . . . The strained relationship between the parents, and the fact that as a circumcised child J would be unlike most of his peers, increases the risk that J will suffer from adverse psychological effects from being circumcised.

Having reached this conclusion, the court was able to avoid squarely confronting the legality of non-therapeutic circumcision, and could simply state that, for such a procedure, the consent of both parents would be desirable. On appeal Thorpe LJ reafﬁrmed that the judge had correctly balanced the father’s right to manifest his religion against the welfare of the child and the rights of the mother. However, the more fundamental issue of why, in the event of agreement, this should be a familial decision is not addressed by either court. For our purposes the interest of the case lies in how it reveals law’s reluctance to calculate the (admittedly complicated) risks of circumcision, and its

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readiness to set the social, religious or cultural beneﬁts believed to ﬂow from the practice against medical harms. Implicit in the judgements in this case is the assumption that the socio-religious beneﬁts accruing in cases where a child is brought up in a Muslim or Jewish environment would be sufﬁcient to outweigh the medical risks – a conclusion endorsed by a number of leading medico-legal commentators. For instance Margot Brazier notes that: The child suffers momentary pain. Although medical opinion may not necessarily regard it as positively beneﬁcial, it is in no way medically harmful if properly performed. The community as a whole regards it as a decision for the infant’s parents (Brazier, 1992: 350).7

In the Court of Appeal, Thorpe LJ seems more cautious but does cite with approval Wall J’s view that: [C]ircumcision is an effectively irreversible surgical intervention which has no medical basis in J’s case. It is likely to be painful and carries with it small but deﬁnable physical and psychological risks. For it to be ordered there would accordingly have to be clear beneﬁts to J which would demonstrate that circumcision was in his interests notwithstanding the risks (at 574).

Yet, although he summarily dismisses the contrary view of the father’s counsel that any considerations against circumcision were either transient or speculative, it is noteworthy that there is no explication of the precise nature of these physical and psychological risks. This is curious in an age when judges in health care cases appear to require ever more detailed quantiﬁcations of risks prior to authorising medical interventions.8 Although a potential disadvantage is that reducing cost beneﬁt analyses to statistical calculations may be very contested and may render judges especially susceptible to medical evidence if it is framed in quantiﬁable terms, we would argue that it is important that some attempt is made to quantify the nature of risks, especially when the purpose is non therapeutic, as in the contexts of research and vaccination, as well as circumcision. As well as minimising risks, commentators are equally prone to exaggerate putative beneﬁts of infant circumcision. As noted above, Caroline Bridge reads Re J as authority for the proposition that doctors must embrace cultural pluralism by recognising and acting upon religious wishes, even if this involves a medically unnecessary procedure which interferes with the bodily integrity of the child, provided both parents agree and to the extent that the child beneﬁts (Bridge, 2002: 282). However, in weighing these beneﬁts, she not only characterises the practice as not causing signiﬁcant harm, but also includes highly contested protective beneﬁts against sexually transmitted diseases which are said to ﬂow from male circumcision. Bridge’s conclusion in facilitated by the rhetorical strategies we have outlined:

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Male circumcision is relatively harmless albeit, like tattooing, irreversible. The risks are minimal, the cultural and religious signiﬁcance very great to large number of people, and it is now reported as having long term protective effects. This enhances its rational basis. Just as signiﬁcantly, it is not a practice belonging to the fringes of society but is almost part of the mainstream. Female circumcision is the reverse (Bridge, 2002: 284).

Though conceding that this is “an arguably medically unnecessary and irreversible invasive procedure on male infants” and that it is “arguably, unnecessary mutilation for religious or cultural reasons”, Bridge concludes that “[a]rguably the long term protective beneﬁts of circumcision, coupled with its religious signiﬁcance, contribute to the child’s overall welfare and is in his best interests” (Bridge, 2002: 281). The repeated qualiﬁer ‘arguably’ signals how much scope there is for debate over the alleged beneﬁts and risks of the practice, while construing male circumcision as “almost part of the mainstream” signals a reluctance to challenge cultural norms. The process of down-playing medical risks Addressing the question of why such risks continue to be routinely denied or downplayed, thus casting this as a non-issue for law, pulls in several directions. Responses – or rather the failure to respond – to risk may be partly attributable to a widespread unwillingness to recognise certain forms of harm, especially those which are child speciﬁc. Below we address the ambivalent and contested nature of harm and pain. However, notwithstanding the historical and continuing cultural devaluation of the risks posed by male circumcision, it is impossible for commentators to ignore them completely and they are now beginning to be acknowledged in ethics and law. Turning ﬁrst to professional ethical guidance issued to physicians. The American Paediatric Association guidance concedes that the infant experiences pain, with the resulting wound taking approximately ten days to heal. However, provided it is performed properly it concludes that there are generally no acknowledged ramiﬁcations (American Pediatric Association, 1995). As we have noted, the British Medical Association’s advice on circumcision focuses on potential beneﬁts rather than risks, although it acknowledges that, whereas “the practice of circumcision has previously been considered to be morally neutral”, it is now increasingly open to challenge. The BMA advises that: Individual doctors approached by parents requesting circumcision for their sons must counsel the parents about the implications of the procedures, including the health risks involved. Any surgical procedure, including one of a minor nature, carries with it risks, and parents must be made aware of these in order to give valid

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consent to the operation. In addition, doctors usually consider appropriate anaesthesia a requirement and this also carries an element of risk.9

Yet, notwithstanding this tacit acknowledgement of its inherent risks, the practice is clearly to be tolerated. There seems little will on the part of the medical profession, whether institutionally or at the level of the individual practitioner, to challenge the acceptability of the procedure. In this respect attitudes to male circumcision may usefully be contrasted with other areas of health care law, where the ethics and legality of exposing infants to risk has generated considerable controversy and debate. We would suggest that a more productive comparison than female circumcision is to draw analogies with enrolment of infants in clinical research or vaccination programmes. In these contexts children are clearly vulnerable to being used for the beneﬁt of others, raising similar concerns about the limits, if any, to parental powers to consent to controversial and invasive procedures on very young children. Yet, despite the possibility of real beneﬁt to the individual child or other children, an extensive literature debates the ethics of engaging children in such practices (see, for instance, Nicolson, 1985; Bridgeman, 2002). The lack of tangible individual or societal beneﬁt accompanying circumcision makes it surprising that the routine nature of this practice has escaped similar legal controversy. Law’s failure to scrutinise adequately the risky nature of this practice is particularly indefensible, since tort actions have forced law to confront and quantify the damage that has resulted from negligently performed circumcisions.10 One glaring example of UK law’s failure is an inﬂuential Law Commission consultation paper, whose reasoning forms the basis for the BMA’s guidance. In Consent in the Criminal Law the Law Commission addressed the limits that law should impose on the degree of injury to which a victim might lawfully consent. Its conclusion – that English law should permit the causing of intentional consensual injury provided that it fell short of being “seriously disabling” (Law Commission, 1995: para 4.51) – would represent a signiﬁcant liberalisation of English law in relation to a range of consensual practices, such as sado-masochism, branding, piercing and tattooing. In adopting this position, the Commission was highly critical of the landmark House of Lords’ decision in R v. Brown (R v. Brown [1993] 2 All ER 75), which criminalised the inﬂiction of injury during consensual sado-masochistic practices.11 However, the notable feature of the practices considered by the Law Commission in Part IX of this report is that, aside from male circumcision, all of them are consensual actions engaged in by adults. To place infant male circumcision in this context seems bizarre, and explicable only by the Commission’s implicit endorsement of an obiter comment by Lord Templeman in Brown, categorising male circumcision as a deliberately inﬂicted, but apparently lawful injury:

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Surgery involves intentional violence resulting in actual or sometimes serious bodily harm but surgery is a lawful activity. Other activities carried on with consent by or on behalf of the injured person have been accepted as lawful notwithstanding that they involve actual bodily harm or may cause serious bodily harm. Ritual circumcision, tattooing, ear piercing and violent sports including boxing are lawful activities.12

In the single paragraph which it subsequently devotes to circumcision the Commission simply states, without reference to any legal authority, that “[m]ale circumcision is lawful under English common law.” There is no discussion of what the practice involves, and, crucially, harms occasioned are downplayed or wholly ignored in the following statement: It is generally accepted that the removal of the foreskin of the penis has little if any effect on a man’s ability to enjoy sexual intercourse, and this act is not, therefore, regarded as a mutilation (Law Commission, 1995: para 9.2).

There is no acknowledgement that this position is heavily disputed in the medical literature, given that “[t]he prepuce plays an important role in the mechanical functioning of the penis during sexual acts, such as penetrative intercourse and masturbation” (Warren, 1997: 89). Moreover, the Law Commission omits any consideration of the greater risks inherent in circumcision. The elision of these risks leads it to propose that: ‘[I]t would be useful to put the lawfulness of ritual male circumcision beyond any doubt’ (Law Commission, 1995: 9.3). In relation to body piercing of young children the Law Commission is equally tolerant of parental preferences (Law Commission, 1995: 11.22) and Jo Bridgeman suggests this may be rooted in our cultural unwillingness to recognise young children as possessors of bodily integrity (Bridgeman 2002: 111). Moreover, not only does the Commission fail to support its position on these interferences with bodily integrity, but David Ormerod and Michael Gunn have highlighted the inconsistencies underpinning its reasoning. Elsewhere it takes the view that female circumcision should remain completely banned, yet suggests that adults should be allowed to consent to even seriously disabling injury occasioned by gender reassignment or cosmetic surgery (Ormerod and Gunn, 1996).13 We would argue that in its failure to engage fully with a risk/beneﬁt assessment of these various practices, the consultation document, like the Brown decision itself, is characteristic of legal reasoning. Brown has attracted a wealth of critical comment, one strand of which centres on the way in which it grossly exaggerated the risks of the sexual practices involved.14 In the case of circumcision a reversal of this process may be traced in law’s willingness to downgrade risks of harm. This allows the Law Commission to ignore the fundamental challenges posed by male circumcision, including whether it can be categorised as a seriously disabling injury,

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whether the practice should be banned or limited to speciﬁc religious groups and whether it can be regarded as in the best interests of the child (Ormerod and Gunn, 1996: 703). It is signiﬁcant that a range of different ethico-legal texts, from court decisions, to professional guidance, to law reform proposals, reveal a similar understanding of and response to circumcision. Together these texts form an inﬂuential discourse according to which infant male circumcision is perceived as low risk and hence a matter of parental choice, notwithstanding the lack of scientiﬁc justiﬁcation for the practice. Only limited consideration is given to the seemingly obvious fact that circumcision is the excision of healthy tissue from a child unable to give his consent for no demonstrable medical beneﬁt. In the rest of this article we wish to explore why this might be the case. It is necessary in doing so to address the reasons why and conditions in which this discourse and legal norms have emerged. The next section offers a brief genealogy of the emergence and routinization of the practice of circumcision in order to reframe male circumcision by rebutting contemporary medico-legal complacency as to its justiﬁcations. This also serves to highlight the way in which the historical justiﬁcations foreground the idea of marking and managing the sexed infant body and male sexuality.

Historical medical narratives In February 1870 the highly respected and inﬂuential orthopaedic surgeon Dr John Lewis A. Sayre visited a young patient suffering paralysis. Initially he was unable to ascertain the cause, but soon discovered that the ﬁve year old boy’s penis, whilst otherwise normal, had ‘very small and pointed’ glans ‘tightly imprisoned in the contracted foreskin. In an effort to escape, the meatus urinarius had become puffed out and red as in a case of severe granular urethritis.’As he concluded: An excessive venery is a fruitful source of physical prostration and nervous exhaustion, sometimes producing paralysis, I was pleased to look upon this case in the same light, and recommended circumcision as a means of relieving the irritated and imprisoned penis (Sayer, 1870: 206).

The circumcision led to almost immediate improvements in the boy’s health and before long he was walking with normal limbs. Sayer went on to perform a number of such operations. Subsequently he informed his colleagues that circumcision was the answer to a range of ailments: ‘Many of the cases of irritable children, with restless sleep, and bad digestion, which are often attributed to worms, is [sic] solely due to the irritation of the nervous system caused by an adherent or constricted prepuce’ (Sayer, 1870: 210). This marked the begin-

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ning of the rise and rise of Phimosis, an ill-deﬁned and ﬂuid pathology (Hodges, 1999) and the recoding of the foreskin as pathological. Beyond the ailments of children, circumcision came to be seen as a cure for more problematic and elusive illnesses, as Miller notes: Within fairly short order, circumcision was promoted as a remedy for alcoholism, epilepsy, asthma, gout, rheumatism, curvature of the spine and headache . . . paralysis, malnutrition, night terrors, and clubfoot; eczema, convulsions and mental retardation; promiscuity, syphilis, and cancer (Miller, 2002: 527).

Medical circumcision developed during a well-documented period of experimentation in genital surgery. This experimentation was motivated in part by the theory of reﬂex neurosis, a belief that ‘there was an intricate web of nervous afﬁnity running through the spine of every organ of the body and that, in turn, each organ had its own sphere of inﬂuence on physical and mental health’ (Gollaher, 1994). On this understanding, circumcision emerged as a cure for a range of mental as well as physical illnesses. It was promoted as a cure for the related Victorian scourges of masturbation and insanity, and the more amorphous neurasthenia, a condition entailing: morbid fears, fear of society, of solitude, or travelling, of places, of disease, or morbid impulses, to kill oneself or others, mental depression, wakefulness, headache, impaired memory, [and] deﬁcient mental control (Beard, 1882).

Importantly, at the same time that circumcision emerged in a therapeutic context for a growing number of problems, clitoridectomies and other medical treatment of the clitoris were enthusiastically revived for the alleviation of psychological symptoms (Gollaher, 1994). As with this form of female circumcision, a belief emerged that male circumcision cured masturbation, a ‘well known’ cause of degeneracy and insanity. The role played by the emerging fear of the masturbating child in the history of the normalisation of circumcision needs to be acknowledged. Circumcision allowed the Victorians to manage cultural anxieties regarding masturbation,15 which had prompted an extensive campaign against masturbation and spermatorrhoea (‘wet dreams’) (Miller, 2002: 534). It was forcefully argued that circumcision diminished the incidence of masturbation by removing or preventing adhesions which would otherwise lead to the penis being handled and – almost invariably – to self-abuse (Miller, 2003: 527). Arguably, curing masturbation was understood as the most important health beneﬁt of circumcision (Miller, 2002: 527).16 Peter Charles Remondino’s polemical and misleadingly titled History of Circumcision provides an indication of the role played by the spectre of the masturbating child, and illustrates the ultimate status that the ‘tight-constricted, glans-deforming, onanism-producing, cancer-generating’ foreskin attained:

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The prepuce seems to exercise a malign inﬂuence in the most distant and apparently unconnected manner; where, like some of the evil genii or sprites in the Arabian tales, it can reach from afar the object of its malignity, striking him down unawares in the most unaccountable manner; making him a victim to all manner of ills, sufferings, and tribulations; unﬁtting him for marriage or the cares of business; making him miserable and an object of continual scolding and punishment in childhood, through its worriments and nocturnal enuresis; later on, beginning to affect him with all kinds of physical distortions and ailments, nocturnal pollutions, and other conditions calculated to weaken him physically, mentally and morally; to land him perchance, in jail or even in a lunatic asylum (Remondino, 1891: 187, 255–6).

Associated with the ‘war’ on masturbation was the more general desire to curb or tame masculine sexuality. Thus, in the British Medical Journal in 1935, R.W. Cockshut argued that a (further) beneﬁt of removing the foreskin was the diminishment of the libido: I suggest that all male children should be circumcised . . . Civilization . . . requires chastity, and the glans of the circumcised rapidly assumes a leathery texture less sensitive than skin. Thus the adolescent has his attention drawn to his penis much less often . . . (Cockshut).17

The efﬁcacy of circumcision was so widely accepted that it was enthusiastically advocated as a prophylactic, and by 1910 had become the most common operation in the United States (Miller, 2002: 532).18 The case for prophylactic circumcision was forcefully made by J.M. McGee, though he remained unconvinced by Sayer’s dramatic claims: I would favor circumcision . . . independent of existing disease, as a sanitary precaution [because] . . . (1.) The exposure of the glans to friction etc., hardens it, and renders it less liable to abrasion in sexual intercourse, and consequently venereal ulcer. (2.) It is acknowledged to be useful as a preventative of masturbation. (3.) It certainly renders the accident of phymosis and paraphymosis impossible. (4.) It prevents the retention of sebaceous secretion and consequent balanitis. (5.) It probably promotes continence by diminishing the pruriency of the sexual appetite (McGee, 1882, cited in Gollaher, 1994).

Finally, within this history it is important to note the class and race dynamic that emerged. The fact that routine male circumcision long out lasted the sanitary movement may be explained in part through the recognition of how circumcision status became a signiﬁer of social standing or distinction. Within this period childbirth for the middle- and upper-classes moved from the domestic setting to a medical moment subject to the management of physicians. As midwives rarely performed the procedure, to be circumcised was literally a marker of the child’s birth rite/right. Similarly, it also existed as a barometer of the medicalisation of childbirth and the social status of the profession (Gollaher, 1994). In 1949, on the eve of the decline in circumcision rates in the UK, one study of university entrants noted that 84 percent of students coming

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from the ‘best-known public schools’ were circumcised, in comparison to only 50 percent from other schools (Gairdner, 1949: 1433–37. This worked through from the association between health and morals and also through the association with the physician ‘class’. Gollaher notes that: ‘the trend was inspired by a kind of medical class who persuaded their private patients of . . . the utility of emulation’ (Gollaher, 1994). This emulation of class was of growing importance within the changing demographics of turn of the century America. With the inﬂux of immigrants from Southern and Eastern Europe a racist discourse of pollution and contagion emerged. Circumcision status as a social marker ﬂourished within this. As Gollaher concludes: So it happened that the foreskin, despised by the medical profession, came to broadly signify ignorance, neglect, and poverty. As white middle-class gentiles adopted circumcision, those left behind were mainly recent immigrants, African Americans, the poor, and others at the margins of respectable society (Gollaher, 1994: 22–23).

The distribution across class continues to the present day (Miller, 2002: 532), and may be a material factor in the persistence of the procedure. As Sarah Waldeck has argued, ‘norms that are rooted in concerns about esteem and reputation often work to lock in inefﬁciencies’ (Waldeck, 2002).

Constructing harm to boy’s bodies In the more recent medical narratives surrounding circumcision that we examined above the discourse of risks and harms looms large. Signiﬁcantly, however, the preoccupation in this literature is again with harms that are portrayed as ﬂowing from a failure to circumcise, rather than those potentially or directly inﬂicted by the practice of circumcision itself. We would argue that this is a typical feature of law, which as we have noted, tends differentially to construct harms, attaching weight to some, while downplaying others. In a society characterised by a proliferation of risks, the notion of ‘harm’ remains conceptually ﬂuid. As Beck, Wells and others have argued, societal perceptions of risk are culturally speciﬁc and dependent on contemporary notions of what harms are acceptable (see, for instance, Beck, 1992; Wells, 1998). Medicine and law function as key social institutions to not only manage risks, but to produce knowledge about them. Ideally, this should translate into some forum for disseminating and debating the legal and moral issues raised, but in the context of male circumcision, we would argue that current ethical guidance and law fails to do this. We would suggest that a number of factors facilitate the downplaying of risks and harm this context. It is worth noting that the notion of harm is inherently subjective and open to manipulation. The texts we have analysed above

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demonstrate Carol Smart’s contention that ‘harm’ is not “a transcendental notion which is automatically knowable and recognisable at any moment in history by any member of a culture” (Smart, 1999: 392).19 Moreover, the notion of harm to children is particularly open to manipulation given the inability of a young child to articulate his pain and the contradictions which are evident in law’s understanding of children. As Katherine O’Donovan has argued, law routinely denies the subjectivity of children, and has structured the parent/child relationship in terms of parental responsibility (O’Donovan, 1993). Of course, this general construction of the child as a legal object rather than subject is reﬂective of a broader confusion in our society about the status of children. Throughout the twentieth century Valerie Zelizer has traced a profound cultural transformation in our attitudes to children, which she terms the ‘sacrilization’ of children’s lives. This process involves a shift from viewing children as an object of utility to valuing them as an object of sentiment (Zelizer, 1985: Chapter 1). These competing constructions of the child – as expendable property and as a sentimental object of concern – can both be tracked in the history of circumcision we have outlined. Although the latter construction is now dominant, in the Victorian era children were much more readily deemed expendable – as exempliﬁed by high rates of infant mortality, and even new born child murder (Jackson, 1998). Thus, it is scarcely surprising that “[c]hildhood has lurched from privacy, non regulation and minimal legal protection into regulation by a phalanx of specialist agencies” (Evans, 1993: 392). Yet, as exempliﬁed by the circumcision debates, such regulation remains partial, as certain decisions pertaining to children remain unchallenged in the private zones of family and religion. Thus, although they may indeed be cast as objects of concern, frequently this does not translate into beneﬁts or protection for the child. In our discussion of how the Law Commission discounted risks to children at pp. 164–5 above, we noted Bridgeman’s argument that we remain culturally unwilling to recognise the bodily integrity of young children. She argues persuasively that “within law, children’s bodies are constructed as potential and what is permitted by the law is determined by consideration of the future which the child embodies and without consideration of the present reality of the child” (Bridgeman, 202: 103). We would suggest that, in the circumcision context, this construction of the child results in undue priority being accorded to parental assessments of his best future interests and a concomitant downplaying of harms inﬂicted in the present. The harm which we would particularly ﬂag up in this context is the pain inﬂicted on the child. As Elaine Scarry has argued in her inﬂuential consideration of the topic, it is inherently difﬁcult to make sense of pain. Unlike any other state of consciousness it lacks a referential context – “it is not of or for anything. It is precisely because it takes no object that it, more than any other phenomenon, resists objectiﬁcation in lan-

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guage” (Scarry, 1985: 5). Scarry suggests that pain’s resistance to, or active destruction of language, results in it being radically unshareable: [F]or the person in pain, so uncontestably and unnegotiably present is it that ‘having pain’ may come to be thought of as the most vibrant example of what it is to ‘have certainty’, while for the other person it is so elusive that ‘hearing about pain’ may exist as the primary model of what it is ‘to have doubt’. Thus pain comes unshareably into our midst as at once that which cannot be denied and that which cannot be conﬁrmed (Scarry, 2002: 4).

Clearly such difﬁculties in communicating and sharing the experience of pain are compounded in the case of young children since they have no language at all in which to attempt to communicate their experience. In this regard we would argue that the medical profession have been culpable in their failure to articulate the pain inherent in circumcision. Indeed, as Miller points out, doctors took advantage of the fact that performing the procedure on neonates who were incapable of resisting made it considerably easier to practise (Miller, 2002: 530). Furthermore, then prevailing beliefs that neonates did not experience pain allowed physicians to argue that surgical interventions at this early stage carried reduced risks, since they could be accomplished without anaesthetic and with less invasive cutting than would be necessary with an older child. Additionally, even physicians who acknowledged that the procedure inﬂicted pain could justify this by pointing to a salutary association thereby created between pain and masturbation, thus reinforcing the campaign against masturbation.20 Miller notes that a further practical advantage of early circumcision was that bad results, even death, were easily explicable in an era where neonatal death was unremarkable (Miller, 2002: 530–1). It is more surprising that modern understandings of children as objects of intense concern (Evans, 1993: 209), coupled with signiﬁcantly reduced rates of infant mortality, and growing evidence of the capacity even of late foetuses to feel pain (Fitzgerald, 1995), have not conspired to make doctors more conscious of the need to underline the infant capacity for pain and to contest practices which inﬂict it unnecessarily. As Scarry notes, “the success of the physician’s work will often depend on the acuity with which she can hear the fragmentary language of pain, coax it into clarity and interpret it” (Scarry, 1985: 7). In this regard we argue that the medical profession have failed children. We would also suggest that gender is crucially implicated in this failure. In health care, as in other legal disciplines, male bodies have functioned as the norm and therefore tended to be less politically contentious than other bodies. Thus, feminist critiques of health care law have done much to foreground harms that are speciﬁc to women’s bodies, while foetal rights advocates have argued strenuously for foetal protection policies that avert harm to the foetus. Debates concerning these bodies have often focused on their vulnerability to

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harm – as is evident in the framing of debates around female circumcision. By contrast, male bodies are typically constructed as safe, bounded and impermeable.21 We would argue that this construction is problematic in a number of ways. Within the immediate context it ﬁts somewhat uneasily with law’s rather vexed construction of children’s bodies, rendering the construction of the boy’s body in law inherently contradictory. We would suggest that this may make it more difﬁcult to uncover harms to boys – a contention which seems to be borne out by the tendency of Anglo-American legal commentators to minimise the harms inﬂicted on boys by circumcision with a concomitant propensity to exacerbate the risks occasioned by less invasive forms of female circumcision. Our suggestion is that within law the role of abuse victim is feminised, so that the discursive construction of victims may produce a greater acknowledgment of harms perpetrated against girls. As Carol Smart has noted, boys were seemingly “not constituted as part of the historical story of child sexual abuse” (Smart, 1999: 395). On this view gender is an important component of the subjective construction of harm. This contention is also borne out by the historical medical narratives outlined above, which continue to be implicated in contemporary reluctance to acknowledge male circumcision as harm. Moreover, we would tentatively ﬂag up here an argument that, for boys, the pain inﬂicted by circumcision may even be seen as beneﬁcial in fostering a necessary training in masculinity. In aesthetic terms it serves to medically enhance his body, thereby conferring important social beneﬁts through signalling his membership of privileged religious, racial or social groupings. We would argue that understanding circumcision as an initiation into masculinity underpins the deeprooted cultural preference for male circumcision in Anglo-American world and is useful both in accounting for the persistence of the practice and in suggesting ways to eradicate it.

Conclusions Although the sensation of pain is entirely subjective, how it is perceived, conﬁgured, communicated and, explained, relieved or ampliﬁed, and its effect upon a person’s relationship to others and themselves, are shaped inter-subjectively by cultural beliefs and social practices, including, not least by prevailing medical categories and beliefs (Morgan, 2002: 88).

This paper has aimed to question the general legal and social acceptance of the practice of routine male circumcision. Contesting current legal approaches to issues of harm, risk and the rights of children, we have argued that the dominant permissive approach to male circumcision is indefensible. Historically law has tolerated male circumcision as a benign practice, but we hope to have

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demonstrated that many of the underlying reasons for construing it as harmless need to be re-assessed. Doing so would, we argue, help to challenge the view that simply because a practice is perceived as mainstream in our society (Bridge, 2002: 282) it is to be legally tolerated in the absence of a compelling case that its medical beneﬁts outweigh its clear harms. We concur with Sarah Waldeck’s position that imposing legal reforms will not work unless the social norms which underpin them and parental motivations for circumcising their children are understood and subjected to challenge. Consequently we suggest that further consideration is needed of the speciﬁc form which legal regulation might take, on this and other issues where parents are entrusted with deciding in the best interests of their children. Any legal reform proposals must be coupled with a clear demonstration of their rationale, and we would argue that the medical profession has a key role to play in education. As was the case with child sexual abuse, we suggest that the contested nature of key conceptions in the circumcision debate – such as ‘child’, ‘harm’ and ‘pain’ – combined with the fact that such pain is inﬂicted within the sanctity of the family account for law’s resistance to attempts to regulate the practice or fully evaluate its risks. In this context, as with the uncovering of child abuse, we would argue that there is a need for law to be alert to its power in deﬁning risks and manipulating the concept of harm, and to interrogate why parents should be entrusted with decisions about their children’s best interests. For so long as children continue to function as the repository of various contradictory meanings, concerns that they evoke will often speak more to the implications for adults of issues surrounding the child, than child protection.22 Our contention is that in cases of demonstrable harm, such as the unnecessary and painful excision of healthy tissue, law and professional guidance should be motivated by child protection until that child can make his or her autonomous decisions.

Notes 1 Circumcision is a legitimate medical treatment primarily for Phimosis. Phimosis refers to a constricted or adherent foreskin. Most male infants are, however, born with an adherent foreskin that only subsequently becomes fully functioning. The vast majority of male children will have fully retractable foreskins by the age of ﬁve. In addition, many persistent problems can be remedied manually without having to rely on circumcision. Medical understandings of Phimosis have been ‘elastic’ and overly inclusive (See Rickwood et al. 2000; Hodges, 1999: 37). 2 Other developed Western European nations have a cumulative national circumcision rate of only c 1.6% for boys under 15 years of age (See Warren, 1997: at 86; Frisch et al., 1995). 3 In 1995 the rate was reported as ‘less than 10%’ (Rangecroft, 1995). Warren suggests that ‘since 1950 the cumulative circumcision rate in boys has dropped from about 30% to about 6 or 7%’ (Warren, 1997).

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4 It is interesting to note that the recent substantial cuts in state government budgets have lead to the termination of public funding for circumcision in a number of states. (Skipp, 2002). 5 Bleeding is a particularly common complication because of the vascular structure of the prepuce, while infection is estimated to occur in 10 per cent of cases. (See also Williams and Kapila, 1993b.) Miller is more graphic: Memories of the pain may impair his intellectual or emotional development. And the procedure, although safe as surgeries go, is not risk free. Boys experience haemorrhage, infection and ulceration; the urethral opening narrows due to scarring; and the penis may be bent, deformed, split, perforated, amputated or burned off (Miller, 2002: 574). 6 This echoes the similar position defended by Benatar and Benatar, 2003. 7 Interestingly in the later edition of her text, having discussed Re J, and then female circumcision, Brazier poses the question “If ritual male circumcision is permissible, why not female circumcision if carried out by surgeons in aseptic conditions” (Brazier, 2003: 359). 8 See, for instance, the discussions in Re MB (An Adult: Medical Treatment) [1997] 8 Med. LR 217 and St George’s HealthCare NHS Trust v S [1998] 3 All ER 673 and Pearce v. United Bristol Healthcare NHS Trust (1998) 48 BMLR 118 on the risks involved in refusing caesarean sections for the pregnant woman and foetus. 9 This acknowledgment of risks makes Lord Templeman’s position on male circumcision in Brown still more puzzling given his stress on all the potential risks which did not materialise in that case. 10 The American cases include: Doe v Raezer 664 A.2d 102 (Pa. Super. Ct. 1995); Felice v. Valleylab, Inc., 520 So. 2d 920 (La. Ct. App. 1987). (See further Miller, 2002; and more generally and from an Australian perspective, see Graycar, 2002.) In the UK, see Iqbal v. Irfan [1994] CLY 164; B (A Child) v. Southern Hospital NHS Trust [2003] 3.Q.R. 9. 11 Perhaps signiﬁcantly one of the charges laid in the Brown case was the following: Count 28 (Malicious wounding . . . The victim . . . had his penis hit and rubbed with sandpaper, then his scrotum was clamped and pinned to a board with three pins. His foreskin was nailed to a board. Matthew Weait notes the similarities between these injuries and forms of punishment which the courts used to sanction, noting the ritual degradation and humiliation present in both (Weait, 1996: pp. 166–7). 12 At pp. 78–9. In this, Brown echoes the earlier unreported decision in R v. Adesanya (1974) which was the ﬁrst case to consider the issue of circumcision. A Nigerian woman was convicted of assault occasioning actually bodily harm (s. 47 OPA 1861) having scarred her 14 and 9 year old sons by making incisions with a razor on cheeks in accordance with ritualistic customs practiced by the Yoruba tribe to which she belonged. King-Hamilton J. held that this practice carried a real potential for serious injury to the eyes if the child had moved his head. He suggested that this distinguished the practice from the ritual circumcision, which he accepted was lawful. 13 On the illogical manner in which existing law treats female circumcision and cosmetic surgery, see Sheldon and Wilkinson, 1998. 14 See Stychin, 1995: Chapter 7; Moran, 1996, chapter 8; Weait, 1996. 15 For a comprehensive analysis of transatlantic anxiety regarding masturbation see Miller, 2000–2001. Whilst this was a transatlantic phenomenon, it should be noted that anxieties ran higher in the United States. As Hodges notes: American doctors saw sexuality as more of a threat to public health and social stability than did their European contemporaries. The American medical profession’s intense

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focus on sexuality was due in part to economic pressures, the lack of a rigidly deﬁned class system, the rise of the middle class, the rise of immigration, and other sources of social tension (Hodges et al. 2002). 16 This assertion is better understood if we look at the construction of masturbation as at the root of nearly all illness. (See, Miller, 2000–2001: 244.) 17 This theory was also supported by E. Harding Freeland in his call for universal circumcision as a means to prevent syphilis: But it has been urged as an argument against the universal adoption of circumcision that the removal of the protective covering of the glans tends to dull the sensibility of that exquisitely sensitive structure and thereby diminishes sexual appetite and the pleasurable effects of coitus. Granted that this is true, my answer is that, whatever may have been the case in days gone by, sensuality in our time needs neither whip nor spur, but would be all the better for a little more judicious use of curb and bearing-rein. (Freeland, 1900). 18 It was still the most frequently performed operation in 1977 (Miller, 2002: 501). 19 See also Miller, Aside from child abuse, another clear example of law’s discursive construction of harm occurs in relation gay sado-masochistic sex in the R v. Brown case considered below. 20 In this vein J.H. Kellogg suggested ‘the pain attending the operation will have a salutary effect on the mind, especially if it be connected with the idea of punishment’ (Kellogg, 1888: 295). 21 See for instance, Sally Sheldon’s discussion of foetal protection policies in the workplace, which she use to demonstrate how “the negation of male reproductive capacity has been harmful to individual men in the same way as women’s reduction to nothing more than reproductive capacity has been harmful to women” (Sheldon, 2002: 26–7; see also Thomson, 2002). 22 For instance, in the case of circumcision, for many fathers the key motivation for circumcising their child has been a desire that their son physically resemble them (see, Hutson, 2004).

References American Academy of Pediatrics, Task Force on Circumcision, (1999) Circumcision Policy Statement Pediatrics 103, p. 686. American Pediatric Association, (1995) Circumcision: Pros and Cons, Guidelines for Parents. Beck, U. (1992) Risk Society: Towards a New Modernity, London, Sage. Benatar, M. and Benatar, D. (2003) ‘Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision’ American Journal of Bioethics 3, (2) pp. 35–48. Beard, G.M. (1882) ‘Circumcision as a Cure for Nervous Symptoms’ Philadelphia Medical Bulletin 4, pp. 248–9. Brazier, M. (1992) Medicine, Patients and the Law 2nd edn, London, Penguin. ——— (2003) Medicine, Patients and the Law 3rd edn, London, Penguin. Bridge, C. (2002) ‘Religion, Culture and the Body of the Child’ in A. Bainham et al., (eds.) Body Lore and Laws, Oxford, Hart. Bridgeman, J. ‘The Child’s Body’ in Evans, M. and Lee, E. (eds.) (2002) Real Bodies: A Sociological Introduction, Basingstoke, Palgrave.

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British Medical Association, (2003) The Law and Ethics of Male Circumcision: Guidance for Doctors, London, BMA. Cockshut, R.W. (1935) ‘Circumcision’ BMJ II, p. 764. Evans, D.T. (1993) Sexual Citizenship: The Material Construction of Sexualities, London, Routledge. Fitzgerald, M. (1995) Foetal Pain: an Update of Current Scientiﬁc Knowledge, London, Department of Health. Fox, M. and Thomson, M. (forthcoming 2005) ‘A covenant with the status quo? Male circumcision and the new BMA guidance to doctors’ Journal of Medical Ethics 31. Freeland, E.H. (1900) ‘Circumcision as a Preventative of Syphilis and Other Disorders’ BMJ II 1869–1871. Frisch, M. (1995) “Falling incidence of penis cancer in an uncircumcised population (Denmark 1943–1990)” BMJ 311, p. 1471. Gairdner, D. (1949) ‘The Fate of the Foreskin: A Study of Circumcision’ BMJ 2 (1949), pp. 1433–37. Gerharz, E.W. and Haarmann, C. (2000) ‘The ﬁrst cut is the deepest? Medicolegal aspects of male circumcision’ BJU International 86, pp. 332–8. Gollaher, D.L. (1994) ‘From Ritual to Science: The Medical Transformation of Circumcision in American’ Journal of Social History 5, pp. 5–36. Graycar, R. (2002) ‘Sex, Golf and Stereotypes: Measuring, Valuing and Imagining the Body in Court’, Torts Law Journal 10, pp. 205–221. Hodges, F.M. (1999) ‘The History of Phimosis from Antiquity to the Present’, in Denniston, G.C. Hodges., F.M. and Milo M.F. (eds.) Male and Female Circumcision: Medical, Legal and Ethical Considerations in Pediatric Practice, New York, Kluwer Academic. Hodges, F.M., Svoboda, S.J. and Van Howe, R.S. (2002) ‘Prophylactic interventions on children: Balancing human rights with public health’, Journal of Medical Ethics 28, pp. 10–16. Hutson, J.M. (2004) ‘Circumcision: A Surgeon’s Perspective?’ Journal of Medical Ethics 30, pp. 238–40. Jackson, M (1998) New Born Child Murder, Manchester, Manchester University Press. Kellogg, J.H. (1888) “Treatment for Self-Abuse and Its Effects”: Plain Facts for Old and Young, Burlington, Iowa F. Segner&Co. Law Commission (1995) Consent in the Criminal Law, London, Consultation Paper 139. McGee, J.M. (1882) ‘Genital Irritation as a Cause of Nervous Disorders’ Mississippi Valley Medical Monthly 2, pp. 103–5. Miller, A. (1984) Thou Shalt Not Be Aware: Society’s Betrayal of the Child, New York, Farrar, Straus and Giroux. Miller, G.P. (2000–2001) ‘Law, Self Pollution and the Management of Social Anxiety’ Michigan Journal of Gender and Law 7, pp. 221–89. ——— (2002) ‘Circumcision: Cultural-Legal Analysis’, Virginia Journal of Social Policy and the Law 9, pp. 497–537. Morgan, D. (2002) ‘The Body in Pain’ in Evans, M. and Lee, E. (eds.) Real Bodies: A Sociological Introduction, Basingstoke, Palgrave. Moran, L. (1996) The Homosexual(ity) of Law, London, Routledge. National Center for Health Statistics (2001) Births: Final Data for 2000. Nicholson, R. (1985) Medical Research with Children, Oxford: OUP. O’Donovan, K. (1993) “The Child as Legal Object” in O’Donovan, Family Law Matters, London, Pluto. Ormerod D.C. and Gunn, M.J. (1996) “Consent – a Second Bash” Crim LR, pp. 694–703.

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Queensland Law Reform Commission, (1993) Circumcision of Male Infants, Brisbane, QLRC. Rangecroft, L. (1995) ‘A Rite to Drop’ BMJ 311, p. 816. Remondino, P.C. (1891) History of Circumcision from the Earliest Times to the Present: Moral and Physical Reasons for Its Performance, Philadelphia and London. Rickwood, A.M.K., Kenny, S.E, and Donnell, S.C. (2000) ‘Towards Evidence Based Circumcision of English Boys: Survey of Trends in Practice’, BMJ 321, pp. 792–793. Sayre, L.A. (1870) ‘Partial Paralysis from Reﬂex Irritation, Caused by Congenital Phimosis and Adherent Prepuce’, Transactions of the American Medical Association 23, pp. 205–214. Scarry, E. (1985) The Body in Pain: The Making and Unmaking of the World, Oxford, OUP. Sheldon, S. (2002) ‘The Masculine Body’ in Evans, M. and Lee, E. (eds.) (2002) Real Bodies: A Sociological Introduction, Basingstoke, Palgrave. Skipp, C. (2002) ‘The First Cut is the Deepest’, Newsweek 1 July 2002, p. 9. Smart, C. (1999) “A History of Ambivalence and Conﬂict in the Discursive Construction of the ‘Child Victim’ of Sexual Abuse” Social and Legal Studies 8, pp. 391–409. Stychin, C.F. (1995) Law’s Desire: Sexuality and the Limits of Justice, London, Routledge. Thomson, M. ‘Reproductivity, the Workplace and the Gendering of the Body (Politic)’Law and Literature 14 (2002) 565–594. Waldeck, S. (2002) ‘On the Cutting Edge: Social Norm Theory and Male Circumcision’, paper given at An ‘Uncomfortable Conversation’ – Sexuality and Feminist Theory: Road Blocks, Detours and New Directions (15th–16th November 2002, Cornell Law School), 1 at 9 (copy on ﬁle with the authors). Warnock, F and Sandrin, D. (2004) ‘Comprehensive description of newborn distress behavior in response to acute pain (newborn male circumcision)’Pain 107, pp. 242–55. Warren, J.P. (1997) ‘NORM UK and the Medical Case Against Circumcision: A British Perspective’ in Denniston and Milos (eds.) Sexual Mutilations: A Human Tragedy, New York, Plenum Press. Weait, M. (1996) ‘Fleshing It Out’ in Bentley, L. and Flynn, L. (eds.) Law and the Senses, London, Pluto. Wells, C. (1998) ‘I Blame and Parents’: Fitting New Genes in Old Criminal Laws’ in Brownsword, R. Cornish, W.R. and Llewellyn, M. (eds.) Law and Human Genetics: Regulating a Revolution, Oxford, Hart Publishing. Williams, N. and Kaplila, L. (1993) ‘Why are children referred for circumcision?’BMJ 306, p. 28. ——— (1993) ‘Complications of Circumcision’ British Journal of Surgery 80, pp. 1231–6. Zelizer, V. A. (1985) Pricing the Priceless Child, New York, Basic Books.

Communication for Abandonment of Female Genital Cutting: An Approach Based on Human Rights Principles1 NEIL FORD2 UNICEF’s Regional Advisor for Programme Communication in Eastern and Southern Africa

1. Introduction UNICEF, with the rest of the development community, has long considered female genital cutting (FGC) a violation of the right of young women to sexual and reproductive health. It has tried several approaches to end the practice, including: – – – –

alternate rights of passage; alternate livelihood strategies for circumcisers; laws prohibiting FGC; and health messages and public awareness campaigns.

These approaches share a common feature: experts from outside the affected communities have initiated the interventions, often with little input or support from community members themselves. In addition, they have not been directed at the primary reason that FGC occurs – to ensure the marriageability of girls. While they have produced awareness in target audiences that FGC has negative health consequences and that other societies do not cut the genitals of young women, they have neither converted this awareness into changed practice nor produced large-scale abandonment of FGC (Mackie, 2000). Consequently, the prevalence of FGC has remained more or less constant in the 28 countries where it is practised. Currently, about 150 million women have undergone FGC and up to two million girls are cut every year (UNICEF, 2003). If large-scale change is to occur, a new way to communicate with the people who practise FGC is necessary. This paper proposes an approach to communication that is based on community dialogue and the development of shared understanding, rather than on the dominant model of health communication: the design and delivery of messages that direct individuals to preferred behaviours. In the dialogue approach, the role of the communication professional is to a) ﬁnd ways to include all community groups in the discussion, Michael Freeman (Ed.), Children’s Health and Children’s Rights, 183–199. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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especially the women and girls who are directly affected by FGC, b) facilitate discussion within and between the groups in a community so that all perspectives are heard and considered and c) introduce new information into the discussion so that action can be informed by knowledge as well as cultural preference. Respect for culture, however, is an important aspect of the communication strategy. Discussion that is based on an appreciation of local language and respect for a community’s traditions creates trust between insiders and outsiders, making it easier for outsiders to introduce new ideas into the conversation and to build energy for changes in practice. Instead of condemning FGC as a “harmful traditional practice”, the dialogue approach to communication starts with an understanding that FGC occurs because parents love their daughters and want the best possible future for them. It does not direct community members to a preferred behaviour through health-education messages. Rather, it uses a non-directive approach that encourages the entire community to discuss health and development issues and reach consensus on the human rights and responsibilities of all members, but especially girls and women, mothers and daughters. This paper proposes an approach to communication that is based on dialogue and human rights principles. It: – explains why non-directive communication, based on human rights principles, is essential to the process of abandoning FGC; – contrasts communication based on human rights principles with the dominant communication strategy currently used in public health programmes: behaviour change communication (BCC); – summarizes the results of a communication workshop in Nairobi (September, 2003) in which participants developed a strategy for FGC abandonment based on human rights communication; – describes the monitoring and evaluation challenges associated with communication from a human rights perspective; and – explains why communication based on human rights principles is an essential component of the most successful approach to FGC abandonment that has been developed to date: the methodology used by Tostan in West Africa. The paper concludes by calling on development agencies and governments in the countries where FGC occurs to support communication strategies based on human rights principles by a) providing adequate funding so that they can be delivered at scale, b) developing capacity in the participatory tools and methodologies required to deliver them; and c) supporting them through policy and legal frameworks that recognize community discussion and consensusbuilding as the key to FGC abandonment.

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2. Communication from a human rights perspective Three human rights principles are particularly relevant to communication for FGC abandonment: self-determination – the right of people to choose for themselves what to do and not have a decision imposed upon them; participation – the right to be actively involved in the decision-making process; and inclusion – the right of all groups in a community, even those who are marginalized, to be part of the change process. From a human rights perspective, the purpose of communication is to create shared understanding between ordinary people (claims holders in human rights language) and people in authority (duty bearers in the same language) to produce consensus on development objectives and shared commitment in achieving them. Development then occurs because people collectively agree on the actions that should occur – through a social learning process of assessment, analysis and action that has involved them as key actors (Jonsson, 2003). Many communication programmes on FGC abandonment, however, are designed and delivered with low levels of support and involvement from ordinary people. Instead, outsiders design communication campaigns to build high-level, international support for FGC abandonment. A typical example is the “Stop FGM International Appeal,” sponsored by the NGO No Peace Without Justice. (No Peace Without Justice, 2004) These communication campaigns have little impact because: – their principal audience is senior-level decision-makers rather than the people actually practising FGC; – the communication campaigns are time-bound and do not engage people long enough or deeply enough to produce change; and – their purpose is to convince people to change individual behaviour rather than to help them re-deﬁne social practice. As a result, the campaigns often create a gap between knowledge and practice. If they have been designed using participatory methodologies (and they often are) people easily understand their messages. But they are unable to act on them because they will face stigma if they stop FGC by themselves. No matter how much they would like to abandon the practice, most mothers continue to circumcise their daughters because that is the only way they can be properly married and maintain the family’s place in society. Survey data from Eritrea, for example, indicates that many people are against FGC – but the practice continues unabated (Carr, 1997). Effective communication for FGC abandonment must therefore go further than explaining why the practice is harmful and then persuading individuals to stop it. It must help them discover how they can stop, by facilitating a non-directive communication process to help them take collective action.

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Non-directive communication is essential because often, community members (insiders) do not respond to directive messages from technical specialists (outsiders). The specialists are not part of the trusted group that inﬂuences decision-making in the community, so their messages are often ignored (Crocker, 1991). This is particularly true in communication about sensitive issues such as FGC. Because sexuality is such a private topic, and because sexual behaviour is largely determined by cultural beliefs, it is difﬁcult for outsiders to discuss FGC with community members, let alone prescribe behaviours to stop it. A more effective (and rights-respecting) approach is for outsiders to facilitate interpersonal communication in which all viewpoints are discussed, guided by the human rights principles of self-determination, participation and inclusion. In this approach, the role of the outside communication specialist is to: – help community members to create “safe spaces” in which sensitive topics can be discussed; – facilitate discussion- or develop the capacity of community members to facilitate discussion – that allows all people to exchange opinions and listen to each other; and – negotiate collective change by helping community members reach consensus on what should be done. Change is then produced from a mixture of insider and outsider knowledge that is agreed upon by all. This non-directive communication approach builds community ownership, a necessary pre-condition for sustained change. If outsiders direct the conversation toward FGC abandonment, rather than facilitate a process in which people come to this conclusion themselves, they do not build the collective will to change. An interactive communication process should ensure the participation of groups that do not usually have a voice, such as young girls. It should also give a voice to inﬂuential individuals such as religious leaders, since they are guardians of the community’s culture. Further, it should employ adult learning techniques to integrate information from technical specialists about sexual and reproductive health into community discussion, improving the knowledge of ordinary people. Improved participation and adult learning techniques enrich the quality of dialogue, ensuring that changes beneﬁt everyone. They help the process of change reach beyond individuals, ensuring the sustainability of collectively agreed actions, and helping to preventing stigma against individuals who ﬁrst abandon the practice. Communication that is based on human rights principles produces social change – it helps to create a supportive community environment within which individuals can change their behaviour. Many existing communication tools and participatory methodologies can be adapted for communication on FGC that is both rights-respecting and nondirective. They include Participatory Learning and Action (PLA), Appreciative

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Inquiry, Community Theatre and Focus Group Discussion. As they adapt these tools, facilitators must ensure that the conversation they generate is truly interactive and that it effectively involves people from all groups in the community – from the marginalized and voiceless to the powerful and respected. In Eastern and Southern Africa, UNICEF has been actively developing an approach to communication that is based on human rights principles in order to produce social change (Ford et al., 2003). But the dominant paradigm in public health communication remains behaviour change communication (BCC), an approach that emphasizes directive communication (messages) to inﬂuence individual behaviour.

3. Moving beyond behaviour change communication BCC strategies are designed by technical experts to improve the survival, growth and development of children in underdeveloped countries, primarily by disseminating messages that encourage them to adopt desired, health-seeking practices such as abandoning FGC. BCC strategies acknowledge ordinary people by including them as participants who provide feedback during the research and testing phases of a campaign. But the desires and priorities of these people, and the effect of their priorities on the outcome of the communication process, are not addressed. In behaviour-change strategies, the purpose of participation is to help technical specialists achieve goals, and the purpose of placing messages in their social and cultural context is to determine the potential effect of the context on the desired outcome. The role of the specialist is to initiate change and the role of the participant is to comply with change. Because the behaviour-change model is essentially one-way in nature (from specialist to participant) it often focuses on technical efﬁciency, marginalizing the traditional and cultural knowledge that participants themselves can contribute to the change process. As a general rule, BCC campaigns for FGC abandonment have a technical focus on reproductive health rather than a cultural focus on understanding (and changing) the relationship between FGC and the marriageability of girls. BCC campaigns have produced impressive short-term results in areas such as oral re-hydration and immunization. In these areas, participants (“target audiences” in BCC terminology) are able to comply with messages and change their behaviour because social relationships and cultural practices remain the same before and after the change process. The required change is relatively short-term (such allowing a baby to receive a course of injections) and relatively simple (such as re-hydrating children when they have diarrhoea). The behaviour changes required to abandon FGC are much more complex. They are embedded in the cultural practices through which families and

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communities deﬁne gender relationships, express sexuality, negotiate marriages and maintain or improve social standing. They are complicated by poverty that limits both choice and opportunity for change. It is almost impossible for individuals to comply with BCC messages in these areas because they must change their social and sexual relationships to do so – not just today or this week, but for the rest of their lives. In the area of FGC, improved understanding does not produce change because individual families are caught in a social trap – they cannot abandon FGC unless or until all the other families in their intra-marrying group abandon it too (Mackie 1996). If a single family tries to change in the absence of a supportive community environment, it is stigmatized and shunned. As a result, BCC campaigns such as Zero Tolerance for FGM have failed to end genital cutting. Information about FGC – no matter how well packaged – is necessary but not sufﬁcient to produce change. For sensitive cultural issues, communication strategies must reach beyond BCC messages targeted at individuals and focus instead on facilitating social change. Here, the role of the outside development specialist is not to prescribe health-seeking behaviours but to bring people together so that they can discuss issues and collectively deﬁne the best development pathway for their community (Rockefeller Foundation, 1999). Information, instead of being packaged into messages, should be integrated into the discussion so that it can be absorbed and understood in the cultural context of the community.

4. Applying communication from a human rights perspective to FGC In order to move beyond BCC and communicate about FGC from a human rights perspective, four shifts from current communication practice are required: Shift one:

from designing messages on FGC abandonment to facilitating dialogue about the practice, so that both insiders and outsiders understand why communities think it is important, and reach consensus on what could be done about it. Shift two: from identifying FGC as a problem, or “harmful traditional practice,” to appreciating community traditions and values and facilitating FGC abandonment within that value system. Shift three: from communication designed to change individual behaviour to communication designed to help people create new social practice. Shift four: from prescribing expert-driven solutions to FGC to helping communities develop their own solution – supporting the process with new information and ideas.

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These shifts in communication practice would encourage community members to take collective ownership of social change, leading to sustainable abandonment of FGC. Within the community, it would encourage girls and young women to claim their right to a healthy sexual and reproductive life because their voices would be heard in the decision-making process. A three-step process is required to put these shifts in practice into operation: Step one:

give a voice to the voiceless in FGC discussion. Find a way for the viewpoints of marginalized people (such as girls) to be heard and considered by more powerful people (such as community or religious leaders), leading to more equal and effective discussion among and between all groups. Step two: facilitate community dialogue on the rights and responsibilities of all community members, with marginalized groups participating. Extend the dialogue process until community members collectively agree on ways to realize the right of young people (especially girls) to survival, growth and development, including FGC abandonment, while at the same time maintaining the community’s culture and value system. Step three: build communication channels between communities and governments, so that community action on FGC can be supported with improved information, policy and service delivery. This three-step process is deliberately simple or “generic” so that it can be adapted and interpreted across a range of communities. FGC is practised in a wide variety of settings across the 28 countries where it occurs. Cutting happens in different settings (from doctors’ ofﬁces to village huts), at different ages (from infants to young women), as part of traditional initiation ceremonies or simply as something that happens when girls grow up. In September 2003, UNICEF’s Regional Ofﬁce for Eastern and Southern Africa convened (and I facilitated) a workshop in Nairobi to discuss a human rights approach to FGC communication with 35 participants from non-governmental and UN agencies, representing seven countries where FGC occurs: Sudan, Somalia, Egypt, Ethiopia, Oman, Eritrea and Kenya. The participants – all involved in FGC programming – agreed that communication from a human rights perspective had the potential to produce more sustainable results than behaviour change communication, because: – – – –

the vast majority of community members do not think that FGC is wrong; campaigns and messages from outsiders have not proven effective; a health education approach can often lead to medicalisation of FGC; and laws and legal frameworks can drive FGC underground, where it is even harder to address.

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During the workshop, they developed three FGC-speciﬁc communication principles for programmers that address these concerns and build on the human rights approach: – Never tell people that they are wrong. Instead, use dialogue to share ideas. – Never tackle FGC as a stand-alone issue. Instead, integrate it into a holistic programme of youth health and development. – Always ﬁnd ways to hear the voices of girls in the dialogue as well as the voices of adults. The participants also extended and improved the stepwise communication process and encouraged programmers to adapt it to their speciﬁc cultural and social context: A. B. C. D.

Give a voice to the most vulnerable. Facilitate processes that support community ownership. Harmonize community values with universal principles of human rights. Help community members create an environment that is conducive to change and sustainability. E. Provide care, support and protection for people affected by FGC. Around each step in the reﬁned process, they reached consensus on implementation techniques and strategies, producing operational guidelines in the form of the following diagrams:

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A. Give a voice to the most vulnerable

Empower girls & women by increasing awareness of their right to health

Such as: Women, girls, youth and ethnic minorities

Adopt a participatory approach, using dialogue to encourage social & behavioural change

Mobilize the community through support groups to create safe spaces for discussion

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Use participatory monitoring & evaluation

Engage the community in dialogue to identify problems, existing structures & appropriate solutions

Undertake a participatory situation analysis & social mapping

B. Build community Ownership

Facilitate dialogue to identify FGC as a concern

Use respectful language, appreciate cultural context and avoid language that either stigmatizes or endorses FGC

Support & engage individuals, families & social groups who have stopped FGC

Empower youth as agents for change

Establish community accountability on FGC

C. Harmonize community values with universal principles of human rights

Identify and promote cultural beliefs and values that reﬂect human rights principles

Deﬁne all forms of FGC as a violation of Human Rights

Promote the abandonment of FGC as a reproductive right

Promote gender equality in FGC programming

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D. Help create an environment conducive to change & sustainability Ensure commitment, coordination and networking of donors for long-term strategic support

Ensure coordination & collaboration between implementing agencies for sustainability

Integrate FGC abandonment into development programmes

Base media messages on community identiﬁed solutions. Foster state commitment and accountability by developing and enforcing policies, laws & programmes Standardize principles, but use tailored approaches

E. Provide care, support and protection for those affected by FGC

Establish a psychosocial support system.

Establish legal support system

Establish physical support system

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This approach to FGC programming views non-directive communication (based on human rights principles) as the central component of an integrated strategy that also includes legal and policy reform at the national level, psychosocial support for women in communities and messages about FGC abandonment through the mass media. In sum, coordinated, large-scale initiatives for FGC abandonment should be based on a) an integrated approach, in which FGC is one element of the programme, rather than a narrow programme focus solely on FGC; b) support for collective abandonment of the practice rather than a focus on individual abandonment; and c) organized diffusion that combines action in and among communities with supportive action at sub-national and national levels.

5. Monitoring and evaluation challenges Measuring the impact of communication based on human rights principles, especially its contribution to integrated strategies for FGC abandonment, is necessarily different from measuring the impact of BCC campaigns. Typically, the evaluation of BCC campaigns, including those targeted at FGC, involves an assessment of: – the scope or reach of the campaign (by counting the number of communication channels that are employed and determining the ability of the channels to deliver messages to a target audience); – the depth of the campaign (by counting the number of messages – both mass-media and interpersonal – that have been transmitted through each channel, to determine how often an individual in the target group is exposed to them); – the effectiveness of the messages (by assessing the extent to which they are relevant to the desired behaviour change, understood by the target audience and placed in an appropriate cultural context); and, most importantly – the impact of the messages (by surveying members of the target group to determine if they have remembered the messages and discussed them with others.) This approach to monitoring and evaluation measures the ability of BCC messages to transmit information about preferred behaviours to members of a target group. Reporting on campaign effectiveness to donors or comparing the effectiveness of different campaigns is relatively easy because most of the assessment criteria are quantitative; the only qualitative component is the assessment of message effectiveness. Applying these criteria, it is relatively simple to determine the overall impact of a BCC campaign.

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But BCC campaigns (and the evaluation criteria associated with them) take a narrow view of the role of communication in development. Typically, they are limited to knowledge transfer and health education – and do little to address (or assess) the ability of individuals to act on the messages once they are received and understood. If there is a gap between improved knowledge and changed practice (as often occurs in communication related to sexuality and FGC) it is neither addressed in the design and delivery of the campaign nor assessed during its evaluation. Further, evaluation of BCC campaigns usually focuses on individual behaviour change, and does not assess changes in the broader social environment that could enable (or inhibit) behaviour change in individuals. Communication based on human rights principles uses non-directive discussion to create a supportive social environment within a community (or intramarrying group of several communities) that makes sustainable abandonment of FGC possible by the entire group. Although education about the health consequences of FGC is an important part of this strategy, the approach focuses on group discussion about human rights and responsibilities to produce a common awareness that large-scale social change is possible. A new way to evaluate this approach to communication is therefore necessary – and has yet to be created. The new approach should combine with equal emphasis: – a qualitative assessment of the communication process (the extent to which discussion was guided by the human rights principles of self-determination, participation and inclusion) with – a quantitative assessment of the communication outcome (the extent to which community discussion lead to collective action against FGC, and the extent to which collective action actually ended FGC in the community.). Integrating these two components of the assessment – and giving each component equal weight – will be difﬁcult. Both are necessary if social change is to occur, so both must be evaluated effectively. Part of the solution might lie in passing ownership of the evaluation process to the people who are creating social change: community members themselves. Participatory monitoring and evaluation (PM&E) would enable them to ﬁrst to determine changes that they themselves would ﬁnd beneﬁcial and then to measure the extent to which the changes have been realized – a process that would support self-renewing, self-determining societies. The Communication for Social Change Consortium has begun work to apply PM&E to social change in areas related to AIDS such as stigma reduction and knowledge of HIV status (Parks, 2004). UNICEF’s Regional Ofﬁce for Eastern and Southern Africa has developed a human rights-based monitoring and evaluation framework for the integrated management of childhood illnesses (Saaks, 2004) that

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includes indicators on participation and ownership. Both these approaches could be applied to the development of a monitoring and evaluation framework for FGC abandonment.

6. Human rights communication combined with public declarations to abandon FGC A programmatic approach to help communities abandon FGC has been successfully developed by Tostan, a non-governmental organization based in Senegal. It combines: – a structured, 18-month programme of community education on human rights and responsibilities in which non-directive communication is used to achieve consensus on collective action; with – public declarations against FGC by communities that form intra-marrying groups. Tostan conducts a baseline assessment of attitudes and behaviours before beginning its programme in a community, and provides long-term training in participatory methods for its facilitators. The facilitators guide community members through more than 200 discussion sessions on issues such as democracy, human rights education, problem solving, hygiene, health, literacy and management skills for social and economic empowerment. To ensure quality, Tostan trains and monitors community management committees to coordinate class activities and community action. To spread knowledge and support sustainability, it organizes inter-village meetings for people to share ideas and compare action-plans. Although well-organized, the underlying methodology of the Tostan approach is non-directive, participatory, and based on human rights principles. Facilitators never direct community members are towards FGC abandonment as a potential goal. Rather, they allow them to discover it for themselves through interactive discussion on rights and responsibilities. Participants in Tostan discussions often hold a ball when they are speaking and then throw the ball to the next person who would like to comment. The facilitator ensures that the ball moves between a wide range of people. If it keeps going back to the facilitator, who must then throw it back to the participants, it is a sign that interactive communication is breaking down. Equally important is an approach to communication that focuses on collective social practice rather than individual behaviour change. Tostan’s success lies in its ability to help an intra-marrying group come to the collective conclusion that FGC violates the rights of young women and damages their health. Change would not occur – and FGC would continue – if selected individuals

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within this group came to the same conclusion. The group must change as a unit in order to provide the necessary assurance to families that their daughters will continue to marry successfully. This assurance must be as absolute as possible, since successful marriages determine the standing of families within the community. It must therefore be ratiﬁed by a public declaration to ensure that the agreed change (abandoning FGC) is absolute and ﬁnal, and that there can be no going back. Collective abandonment is the key. An entire intra-marrying group of villages must make a public declaration to abandon the practice if uncircumcised girls are to be accepted into marriage and lead secure lives. The combination of non-directive discussion of human rights with public declarations against FGC creates a social dynamic in which rapid change becomes possible (Mackie, 2000). After an intra-marrying group abandons FGC, group members are motivated to further improve the marriage prospects of their daughters by convincing other families to give up the practice. A “tipping point” may be reached when a critical number of people have changed (Schelling, 1978) and mass abandonment becomes an unstoppable social force. The tipping point is fast approaching in Senegal, where approximately 1,300 of the 5,000 villages that practise FGC have publicly declared that they will abandon the practice (Tostan, 2003). The results of the Tostan programme indicate that large-scale abandonment of FGC is possible if interventions are based on: – a non-directive communication strategy that is based on human rights principles; – an organized program of community discussion and education; – a focus on collective social change rather than individual behaviour change; and – ratiﬁcation of collective decisions through public declarations. It is worth noting that the communication strategy required to publicize and support a public declaration is very different from the non-directive strategy leading up to it. Celebrating a community’s decision collectively to abandon FGC no longer requires discussion and consensus-building. Instead, it requires a range of communication techniques drawn from marketing, traditional ceremony, and mass media. These techniques can be loud, bright and directive because they celebrate a collective decision that has already been taken.

7. Conclusion The international development community has long been concerned about the practice of FGC but has been unable to reduce its prevalence, despite devel-

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oping a variety of programming approaches and conducting a number of directive communication campaigns. A programming approach that combines non-directive community discussion with public declarations against FGC may lead to mass abandonment of this practice. The challenge lies in applying the approach in a range of countries where FGC occurs, learning and adapting as implementation takes place. (For example, could urban families that have abandoned FGC ﬁnd husbands for their daughters through the internet, using cyberspace to identify and expand the social group that has given up the practice?) But to take the new approach to scale and to innovate around it, signiﬁcant changes are required in the ﬁelds of public health communication and public health policy. First of all, practice must shift from BCC to communication based on human rights principles. This shift will require both resources and commitment from governments, development agencies and the donor community. Currently, there are few academic institutions or training agencies that develop capacity in human rights communication. There are equally few development practitioners applying it in their work. Until this capacity is developed, the human rights/public declaration approach has little chance of being applied at scale. Secondly, current policies and legal frameworks that condemn FGC and criminalize its practice should be re-aligned to support a non-directive social change process – and the place of human rights communication within it. Laws against FGC carry no weight when the vast majority of people do not support them. Therefore they should not initiate social change but be used to ratify success once a tipping point has been achieved. Similarly, international accords against FGC such as the Maputo Protocol should be synchronized with the human rights/public declaration approach so that decision-makers at the highest level understand how social change occurs and support the methods that are required to achieve it. Success is possible. One hundred years ago, a group of Chinese citizens, foreign missionaries and activists ended another social practice that violated the rights of girls and damaged their health: foot binding. They did it by forming Natural Foot Societies to start public discussion about the advantages of unbound feet and organize collective public pledges against foot binding. This broad-based social movement was immediately successful. 12 years after it started, Chinese public opinion was solidly against foot binding. Four years later the practice had died in cities and legislation was enacted against it (Mackie, 1996). In June 2004, I witnessed a public declaration to abandon FGC by nearly 100 villages in Kolda, Senegal. The potential to end FGC in a similar manner to the Chinese abandonment of foot binding was evident at this powerful ceremony of cultural afﬁrmation. Rapid, sustained change is possible – but only if:

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– the donor community secures funding and national governments commit resources to implement community-based programmes at scale; – national governments and development agencies support a shift from BCC to human rights communication; – development agencies and national governments develop capacity in the participatory communication methodologies required to produce social change; and – the international community and national governments synchronize accords, policies and laws with the new approach. If there is the will, a global tipping point could be reached by 2015, the year the world community must report progress on the Millennium Development Goals.

Notes In this paper, the term “female genital cutting” (FGC) is used rather than “female genital mutilation” (FGM) because FGC is non-judgemental and makes discussion of this practice easier to facilitate. Parents do not think that they are mutilating their daughters when they cut them. Similarly, the term “abandon” is used rather than “eradicate” because FGC is not a disease that can be eradicated like polio. It is a social practice that can be abandoned. 2 I thank Molly Melching of Tostan, and Maria Gabriella De Vita of UNICEF New York for reviewing drafts of this paper. 1

References Carr, Dara. (1997) “Female Genital Cutting: Findings from the Demographic and Health Surveys Program” Calverton, MD: Macro International, Inc. Crocker, David. (1991) “Insiders and Outsiders in International Development” Ethics and International Affairs, Volume 5, pp. 151–173. Ford, Odallo and Chorlton. (2003) “Communication from a Human Rights Perspective: Responding to the HIV/AIDS Pandemic in Eastern and Southern Africa” Journal of Health Communication, Volume 8, Number 6. Jonsson, Urban. (2003) Human Rights Approach to Development Programming. Nairobi: UNICEF. Mackie, Gerry. (1996) “Ending Footbinding and Inﬁbulation: A Convention Account” American Sociological Review, Volume 61, Number 6. ———. (2000) “Female Genital Cutting: The Beginning of the End” in Shell-Duncan and Hemlund (eds) Female Circumcision in Africa: Culture, Controversy and Change. Lynne Rienner Publishers, Inc. No Peace Without Justice. (2004) STOP Female Genital Mutilation International Appeal .

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Novib Somalia and UNICEF Somalia. (2004) “Campaign for Change – End Violence Against Women in the Horn of Africa: Campaign Strategy Draft 1” Internal Document. Parks, William. (2004) “Who Measures Change? An Introduction to Participatory Monitoring and Evaluation of Communication for Social Change” Communication for Social Change Consortium, unpublished draft. Population Council, Mwangaza Action and Tostan. (2003) “Replication of the TOSTAN Program in Burkina Faso: How 23 Villages Participated in a Human Rights-based Education Program and Abandoned the Practice of Female Genital Cutting in Burkina Faso” USAID-funded study. Population Council, TOSTAN and GTZ. 2004. “Rénforcement des Capacites Villageoise: Evaluation du Programme TOSTAN au Senegal” USAID-funded study. Rockefeller Foundation. (1999) Communication for Social Change: A Position Paper and Conference Report. Saaks, Mathew. (2004) “Human Rights Based Monitoring and Evaluation Framework for Community IMCI – A Resource Pack” Strategy document. Nairobi, UNICEF Eastern and Southern Africa Regional Ofﬁce. Schelling, Thomas. (1978) Micromotives and Macrobehavior New York: W.W. Norton. Tostan. (2000) “Collective Abandonment of FGC begins with the Public Declaration” . ———. (2003) “1,271 Villages have Abandoned FGC and Early Marriage in Senegal through Public Declaration since 1997” . UNICEF. (2003) “FGM/C: Indicators, Survey Data and Results” New York, Strategic Information Unit, Division of Policy and Planning.

Rethinking Gillick MICHAEL FREEMAN Faculty of Laws, University College London

England’s Gillick case in 19851 is rightly seen by observers the world over as a landmark in children’s rights jurisprudence (and see Thomas, 2000). The ruling by the highest court in the United Kingdom that parental rights yielded to the child’s right to make his or her own decision when of ‘sufﬁcient understanding and intelligence’ seemed to usher in a new age (Eekelaar and Dingwall, 1990), one which legislation in England in 19892 and, of course, the UN Convention on the Rights of the Child3 the same year afﬁrmed. It now appears to have been a false dawn. The courts in England, starting in 1992, have beat a hasty retreat. This article examines the move away from Gillick – and laments it. It concludes by calling for a new Gillick, which puts goals and values in the forefront, and places less emphasis on knowledge and understanding. The Gillick Decision The Gillick decision arose out of a challenge by Victoria Gillick to a Circular issued by the DHSS in England which authorised doctors to give contraceptive advice and treatment – in effect the contraceptive pill – to under-age girls (those under 16) without parental approval. By a narrow majority of 3–2 the House of Lords held the Circular was lawful. Noting that the law must be ‘sensitive to human development and social change’, Lord Scarman, speaking for the majority, pronounced that a minor’s capacity to make his or her own decision depends on the minor having sufﬁcient understanding and intelligence to make the decision and is not to be determined by reference to any judicially ﬁxed age limit.4

The case, though nominally about the legality of a government circular on contraception, has much wider effect both within and beyond healthcare decisions.5 Thus, Seymour argues that Gillick . . . opened the way for case-by-case decisions in a range of situations whenever children are old enough to argue that they have the capacity to make informed assessments. If this view is accepted, it might be seen as establishing a new right Michael Freeman (Ed.), Children’s Health and Children’s Rights, 201–217. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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for older children, one which could be deﬁned as: an entitlement, in all disputes, to have their actual capacities determined, rather than being subject to presumptions based on their ages. (Seymour, 1992, pp. 100–101)

Others were less optimistic. Coleman thought Gillick might have made the position of under 16s worse rather than better. First, the complexity of the case, and the legal wrangles surrounding it, have left teenagers confused and uncertain where they stand. Second, the publicity accorded to Mrs Gillick, as well as the tightening up of deﬁnitions, has left doctors with less room to manoeuvre and has caused almost all medical practitioners to exercise greater caution than before. (Coleman, 1993)

I doubt if Coleman is right on the ﬁrst concern. He may well have been right on the second (and see B.M.A., 2001). Certainly, judges have exercised greater caution. Before I examine post-Gillick decisions which illustrate this, I need to discuss further background, for an understanding of the current state of the law requires an examination of the stages through which it has passed.

The Family Law Reform Act 1969 The 1969 Act lowered the age of majority from 21 to 18. It also in s.8(1) provided in unambiguous language that ‘the consent of a minor who has attained the age of sixteen . . . shall be as effective as it would be if he were of full age’. I say ‘unambiguous’ but this is to contend with Lord Donaldson M.R. who in Re W is of no doubt that the language is ambiguous. Re W, as we shall see, concerned a 16-year-old suffering from anorexia nervosa who was refusing medical treatment for this condition. Said Lord Donaldson in Re W: The argument that W, or any other 16- or 17-year-old can by refusing to consent to treatment veto the treatment notwithstanding that the doctor has the consent of someone who has parental responsibilities involves the proposition that s.8 has the further effect of depriving such a person of the power to consent. It certainly does not say so.6

And in the earlier case of Re R (a 15-year-old refusing psychotic medication), he had argued that, although a 16-year-old had the right to consent, ‘if he or she refuses, consent can be given by someone who has parental rights or responsibilities’.7 It is true that s.8(1) does only refer to the power to give a consent and not to the refusal so to do. Thus, there is nothing in s.8(1) which creates the power of veto in favour of the 16-year-old. But it is wrong to draw Lord Donaldson’s conclusion for two reasons. First, Parliament did not consider and reject the power of veto and may have been assumed to believe that consent embraced

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refusal. Secondly, Lord Donaldson appears to have overlooked s.8(3). This states Nothing in this section shall be construed as making ineffective any consent which would have been effective if this section had not been enacted.

The meaning of this is far from clear and commentators have been puzzled.8 What is clear is that it is concerned with the preservation of pre-existing rights: in my view the right of a child under 16 to continue to be able to provide a valid consent. The question was addressed in Gillick, but no ﬁrm conclusion reached. Lord Donaldson in Re R and Re W can be taken to be upholding a different interpretation: namely that the pre-existing rights upheld by s.8(3) are the rights of those with parental responsibilities.9 But Lord Donaldson must be wrong because, if s.8(3) is referring to parental rights at common law, these are rights which have ‘dwindled’ to the point of ‘yielding’ to the child’s right to make his/her own decisions when of ‘sufﬁcient understanding and intelligence’.10 For Lord Scarman and the majority in Gillick it is clear that the refusal of a child below 16 who is Gillick-competent is ‘determinative’. If Lord Donaldson were right – indeed this was argued by Mrs Gillick’s counsel – until the passing of the 1969 Act any treatment of anyone under 21 without parental consent must have been unlawful – a conclusion so utterly preposterous that it is difﬁcult to imagine anyone contemplating it (though Lord Donaldson himself comes close to so doing).11 There is a further question, which has been insufﬁciently examined. Does the Gillick-competence test apply to 16 and 17-year-olds as well as to those below the age of 16? According to Lord Donaldson it has ‘no reference’ to 16 and 17-year-olds.12 The better view is that, like the rest of us, they are presumed competent, unless the contrary can be proved.13 Whether it should be easier to do so in the case of a 16-year-old than with someone of 26 or 66 is a moot point. I would doubt it.14

The Children Act 1989 The Children Act 1989 was not in operation when the ﬁrst case in the retreat from Gillick (Re R) was decided. It was when the courts came to consider Re W. The Act is signiﬁcant for a number of reasons.15 First, following the Gillick precedent, there are ﬁve provisions in the Act which give a child of sufﬁcient understanding to make an informed decision the power to refuse to submit to medical and psychiatric examinations and other assessments16 (and in one provision only, psychiatric and medical

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treatment).17 The general philosophy embedded in these provisions favours empowering the Gillick competent child and investing in him and her the power speciﬁcally of veto.18 Secondly, W was in the care of the local authority. This, accordingly, had parental responsibility.19 It would seem to follow from Re R that the authority could have consented to W’s treatment on her behalf. But it applied to the court for a direction that it be at liberty to place W in the hospital specializing in the treatment of eating disorders and that she be given medical treatment without her consent if necessary. Section 100 of the 1989 Act is designed to circumscribe the extent to which a local authority may seek to invoke the inherent jurisdiction of the court.20 Inherent Jurisdiction cannot be invoked to make a child who is the subject of a care order a ward of court. But leave may be sought and granted if, inter alia, ‘there is a reasonable cause to believe that if the court’s inherent jurisdiction is not exercised with respect for the child he is likely to suffer signiﬁcant harm’.21 It may be argued that in granting leave and in making the directions sought the judges have evinced a reluctance to accept one of the clear goals of the Children Act – to leave decisions to parents and their substitutes. In doing so, they have left us with a number of concerns. If the local authority had, despite W’s protestations to the contrary, consented to treatment, it would have been ﬂouting s.22 of the Children Act. This requires the views of the child to be ascertained and ‘due consideration’ to be given to them in making a decision with respect to the child.22 If the local authority were not able to invoke the court’s assistance it would risk a challenge by way of judicial review if it ignored a competent child’s protestations. By transferring responsibility from its shoulders to those of the court it avoids both challenge and opprobrium. The court’s decision may be appealed, but there is no other recourse. Thirdly, the checklist in s.1(3) lists among other considerations to which the courts are to have regard ‘the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding)’.23 The checklist only applies to contested s.8 applications24 and to part IV orders.25 There are two views as to what this means. Thorpe J., at ﬁrst instance in Re W, held it to have no application in W’s case because it was not a contested s.8 application or an application for an order under part IV of the Act.26 But in the Court of Appeal Nolan L.J. expressed the opinion that the checklist had general application.27 Whilst this cannot be literally right – if Parliament had so intended, it could have said so – it is surely appropriate that considerations in the checklist are relevant, particularly that which emphasises the importance of a child’s wishes and feelings.

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The Retreat: Re R R was 15 and was refusing to give her consent to the administration of medication.28 The unit caring for her made it clear that, if she were to remain there, they required a free hand to administer drugs to her, against her will if necessary. The local authority which had care29 of her was reluctant to authorise the administration of drugs to her against her will, and thus had recourse to wardship proceedings. The issue was thus whether the court had the power to override a refusal by a ward to undergo medical treatment to control her mental condition. The Court of Appeal considered that she was not Gillick-competent because she had neither the ability to understand the nature of the proposed treatment, nor a full understanding of the consequences both of the treatment (its intended and possible side effects), and the anticipated consequences of a failure to treat. Staughton L.J. considered that it was not necessary on the facts to decide whether Gillick provided for the proposition that the parent of a competent child has the power to override the child’s decision because the powers of the wardship judge include the power to consent to medical treatment when the ward has not been asked or has declined.30 Gillick was not a wardship case. The wardship court had, it was held, the power to override the decisions of a Gillick-competent child – whether saying ‘yes’ or ‘no’ to treatment – and his or her parents. This meant that the powers of the court over the child could be greater than the powers of his or her parents. Lord Donaldson went beyond what was necessary to decide the case before him, and commented on the question of a conﬂict between the child’s wishes and the parents. Motivated primarily by the need to protect the doctor against what otherwise might be unlawful treatment,31 he constructed the ‘keyholder’ metaphor.32 (As we shall see in Re W he rejected this).33 He considered that there are a number of people who can give their consent to the treatment of a child under 16, so as to make the doctor immune from a charge of battery. Only if all those people withhold their consent will it be impossible in law to treat the child. He sees consent as ‘a key which unlocks a door’.34 A Gillick-competent child has that key, but so do his/her parents. They have a several as well as a joint right ‘to turn the key and unlock the door’.35 Returning to Lord Scarman’s judgment in Gillick he argues . . . Lord Scarman was discussing the parents’ right to determine whether or not their minor child below the age of 16 will have medical treatment and this is the “parental right” to which he was referring in the latter passage. A right of determination is wider than a right to consent. The parents can only have the right of determination if either the child has no right to consent, i.e. is not a keyholder, or the parents hold a master key which could nullify the child’s consent. I do not understand Lord Scarman to be saying that, if a child was “Gillick-competent” . . .

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the parents ceased to have an independent right of consent as contrasted with ceasing to have a right of determination, i.e. a veto. In a case in which the “Gillickcompetent” child refuses treatment, but the parents consent, that consent enables treatment to be undertaken lawfully, but in no way determines that the child shall be so treated. In a case in which the positions are reversed, it is the child’s consent which is the enabling factor and again the parents’ refusal of consent is not determinative.36

So, in Lord Donaldson’s view a Gillick-competent child could have treatment forced upon her against her will. In effect this would remove autonomy and self-determination from children at an age when more responsibility and self-direction is expected of them. Many will ﬁnd the implications of Lord Donaldson’s judgment insensitive if not offensive. A Gillick-competent girl of 15 cannot object to a male doctor touching her, if one of her parents gives consent. Further, once the child is a ward of court, the court’s ‘well-established task’37 is to have regard to the welfare of the ward as the paramount consideration.38 In other words, the wishes of a 17-year-old and her parents could be overridden if, in the court’s opinion, this was in the ward’s best interests. A fortiori, the wishes of a Gillick-competent 15-year-old and her parents could also be overridden applying this criterion.

Further Retreat: Re W W was 16 (and thus within the scope of s.8 of the Family Law Reform Act 1969). She was an orphan whom ‘fate has dealt harshly’.39 She was in the care of the local authority which invoked the inherent jurisdiction of the High Court when W, who was suffering with anorexia nervosa, refused treatment for her eating disorder. Lord Justice Balcombe, following the line of Lord Justice Farquharson in Re R, held that in exercising inherent jurisdiction, ‘the child’s welfare is the court’s paramount consideration’.40 He agrees that respecting the wishes of the child may be one way of giving paramount consideration to the welfare of the child. . . . the older the child concerned the greater the weight the court should give to its wishes, certainly in the ﬁeld of medical treatment. In a sense this is merely one aspect of the application of the test that the welfare of the child is the paramount consideration. It will usually be in the best interests of a child of sufﬁcient age and understanding to make an informed decision that the court should respect its integrity as a human being and not lightly override its decision on such a personal matter as medical treatment. All the more so if that treatment is invasive.41

According to Lord Justice Balcombe, the court must ascertain the wishes of the child and approach the decision with a strong predilection to give effect to

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those wishes, since this will often be in the child’s best interests. But where in the court’s view, it is not, those wishes may be overridden. Re W is not the ﬁrst instance of a child’s rights being trumped by a court’s view of that child’s best interests. They had previously done this where the child was under 1642 and also where the child was learning disabled (Many will remember Jeanette’s case in 1987).43 But W was 16, and satisﬁed the law’s competency tests. The Court of Appeal could have limited itself to considering the rights of the court in exercising its inherent jurisdiction. But it did not do so and examined, as in Re R, the rights of parents – somewhat ironically because W does not have any. Given that R was not Gillick-competent and was 15 (and thus not within the scope of the 1969 Act), Re W is a decision of much greater signiﬁcance – and concern. Lord Donaldson, aware of the criticism that his judgment in Re R attracted, attempted a different formulation in Re W. He rejects the keyholder metaphor and substitutes for it the analogy of the ‘legal “ﬂak jacket” ’. This . . . protects the doctor from claims by the litigious whether he acquires it from the patient, who may be a minor over the age of 16 or a ‘Gillick-competent’ child under that age, or from another person having parental responsibilities which include the right to consent to treatment of the minor. Anyone who gives him a ﬂak jacket (i.e. consent) may take it back, but the doctor only needs one and so long as he continues to have one he has the legal right to proceed.44

To forestall the criticism that a 17-year-old could be forced to undergo a termination of pregnancy against her will – he admits this is a hair-raising possibility – he himself dons the ﬂak-jacket of medical ethics. Doctors would not let it happen ‘unless the abortion was truly in the best interests of the child’.45 But he concedes it could happen, and cites the famous ‘Sotos Syndrome’ case (Re D in 1976),46 where it was only as a result of chance intervention by an educational psychologist ﬁnanced by the National Council for Civil Liberties that an 11-year-old was saved from being sterilised unnecessarily. He does not address the illogicality of a 15-year-old girl, for example, being allowed to consent to a pregnancy termination but not being allowed to refuse an abortion. It will be noted that Lord Donaldson’s concern yet again is not with the rights of adolescents but in protecting doctors from the ‘litigious’. What he fails to see – or address – is how removing legitimate expectations from rightsconscious adolescents is likely to provoke litigation. Extending this reasoning to 16-year-olds almost a generation after the passing of the 1969 Act, and in an age more conscious of the importance of taking children’s rights seriously47 is thoroughly objectionable and, indeed, unprincipled. By extending his reasoning to parental rights, quite unnecessarily on the facts before the court, he has

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created a situation where a plethora of parties can by their acts foist treatment on an unwilling adolescent. In his summary Lord Donaldson states this conclusion succinctly: No minor of whatever age has power by refusing consent to treatment to override a consent to treatment by someone who has parental responsibility for the minor and a fortiori a consent by the court. Nevertheless, such a refusal is a very important consideration in making clinical judgments and for parents and the court in deciding whether themselves to give consent. Its importance increases with the age and maturity of the minor.48

How signiﬁcant the concession that an adolescent’s refusal is a ‘very important’ factor in clinical decision-making becomes cannot be judged in advance. As the medical profession moves away from paternalism, albeit slowly, it may take on importance. There is some understanding of adolescence in Lord Donaldson’s judgment (but contrast Yamamoto et al., 1987). It is a pity that his understanding of anorexia nervosa is not greater for the dilemma posed in W’s case constitutes a paradigm for those who want to understand the importance of children’s rights.49 The anorexic is typically lacking in self-conﬁdence. She may suffer, what Hilda Bruch, discussing one case, calls ‘the basic delusion of not having an identity . . ., of not even owning their body and its sensations’. (Bruch, 1974, 50). The causes of anorexia differ but what unites them is ‘the urgent need to be in control of their own lives and have a sense of identity’.50 We know that W wanted control over her life: she wanted to stay in the adolescent psychiatric unit and decide when she would eat. The ability to make these decisions was taken away from her. Her life may have been saved, but at the price of further undermining her identity and integrity. Indirectly, decision like that in Re W will create more anorexics, and also more disturbed adolescents.

The Retreat Conﬁrmed There was one case which adopted the Re R/Re W line before those cases were decided. In Re E in 1990 Ward J. had overridden the refusal of a 15-year-old Jehovah’s Witness to consent to a life-saving blood transfusion. In that case Ward J. remarked I ﬁnd that E has no realisation of the full implications which lie before him as to the process of dying. He may have some concept of the fact that he will die, but as to the manner of his death and to the extent of his and his family’s suffering I ﬁnd he has not the ability to turn his mind to it nor will he do so.51

Ward J.’s reasoning should be carefully studied. Were it applied to an adult, it is dubious whether refusal to be treated would ever be allowed. The case itself

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had a tragic sequel.52 At 18 the boy exercised his rights and refused further transfusions. He died within days of his eighteenth birthday, having spent the last two-and-a-half years of his life being violated (as he saw it) as a result of a court order. The ﬁrst case after Re W is Re S in 1994.53 To the 15-year-old in this case who suffered from thalassaemia compelling her to undergo blood transfusions was described by the girl herself as ‘like rape’.54 She was a new convert to the Jehovah’s Witness faith. She said ‘Having someone else’s blood is having someone else’s soul’.55 She prayed for a miracle and for God to save her. But like Ward J. in Re E, Johnson J. in Re S was prepared to override the girl’s consent. Rejecting the idea that S was ‘in-between’ adulthood and childhood – in other words in the category for whom Gillick-competence is designed – he held she was ’still very much . . . a child’.56 Though impressed by her integrity and commitment, they were, said the judge, ‘the integrity and commitment of a child and not of somebody who was competent to make the decision that she tells me she has made. She hopes still for a miracle. My conclusion is, therefore, that she is not “Gillick-competent”.’57 Many adults in S’s position would hope for a miracle. Given that a psychiatric witness in the case doubted whether she was ‘seriously immature’ for someone of her age, it is difﬁcult how the judge concluded she was not Gillick-competent. A ﬁnding of Gillick incompetence is, of course an easy way out – and one accordingly that has regularly taken (and not just by the courts, but also by doctors who are the gatekeepers of treatment). One thing is certain and that is that the requirements when assessing an adult’s competence to refuse treatment are far less stringent. Jane Fortin commented that the requirements in Re E and Re S are ‘difﬁcult to justify on logical grounds to the teenagers themselves’ (Fortin 2003). The next case is Re L.58 The adolescent in this case was a 14-year-old deeply religious Jehovah’s Witness who suffered life-threatening scalds whilst bathing. Once again, the court authorised treatment (blood transfusions and other surgical interventions) despite her strong opposition. She lacked, the court implied, ‘the constructive formulation of an opinion which occurs with adult experience’.59 I am not sure what this is but I have no doubt that on the evidence of this case L’s understanding was comparable to that of most adults. She had, for example, taken the step of carrying ‘An Advance Medical Directive/Release form’. The case is particularly signiﬁcant because the judge acknowledged that L had not been given ‘all the details which it would be right and appropriate to have in mind when making such a decision’.60 Of course, if you withhold information from a child it is less likely they can make an informed decision. This is important. Although the judges in Gillick did not address the question directly it is clearly important that competence be understood in terms of capability of understanding rather than in terms of what the child actually understands.61 L may not have understood what was involved in

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her refusal: this does not mean that she was not capable of understanding had she been given the requisite information. Combine an unwillingness to accept a child is Gillick-competent with a refusal to provide them with the information which will assist this process and it becomes relatively easy to override an adolescent’s refusal of treatment.62 One of the most poignant cases is Re M.63 The judgment in this case is striking in that it is addressed to the 15-year-old girl herself. The case itself is signiﬁcant (i) because there is no suggestion that the girl is not Gillickcompetent (she clearly is) and (ii) because the court authorises major surgery – a heart transplant – against the wishes of an adolescent. The judge himself admits that to impose ‘a heart transplant on a young woman who objected [is] very serious indeed’.64 Fortin comments: The court can legitimately argue that society has an interest in protecting underage minors, irrespective of competence, from their own dangerous mistakes until they attain their majority . . . This approach does not demean the minor by suggesting that his or her emotional maturity is fundamentally ﬂawed. (Fortin, 2003)

To assume M was making a dangerous mistake is to assume that life-prolonging treatment is in the interest of the adolescent. M gave cogent reasons for refusing the transplant. She didn’t want to be different, and she didn’t want to take medication for the rest of her life. Forcing her to live may well have demeaned her. As Penney Lewis has pointed out: It may be that in a small minority of cases, an adolescent will be able to make a competent, maximally autonomous choice to refuse life-saving treatment. Respecting such a choice will be difﬁcult, but it is preferable to arbitrary discrimination on the basis of age alone. (Lewis, 2001)

The last case, decided recently, is Re P.65 The subject was nearly 17 and a staunch and committed Jehovah’s Witness. In the light of his problems (he had hypermobility syndrome, symptoms of which included a tendency to bleed because of fragility of blood vessels), it was likely that an episode might occur – one already had – requiring the administration of blood or blood products if he were to survive. The hospital was seeking leave to administer blood if his situation became life-threatening. It knew he would object. He already had and had done so independently of his parents. Johnson J. made the order. Astonishingly, he made no reference to the Family Law Reform Act 1969 s.8. The law, he said, was ‘clear’:66 it was found in Balcombe L.J.’s words, which I have already quoted. There is no discussion of whether the patient is competent or not, though from what we can glean he clearly is. Johnson J. thought . . . there may be cases as a child approaches the age of 18 when his refusal would be determinative. A court will have to consider whether to override the wishes of a child approaching the age of maturity when the likelihood is that all that will

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have been achieved will have been deferment of an inevitable death and for a matter only of months.67

But – and here he quoted Nolan L.J. in Re W 68 – ‘it is the duty of the court to ensure so far as it can that children survive to attain that age’. It was, Johnson J. concluded, in the interests of the patient ‘in the widest possible sense – medical, religious, social, whatever they may be’69 to make the order sought, though he added the proviso ‘unless no other form of treatment is available’. It is difﬁcult to see how this decision can be in the interests of the patient. It may not be in his best medical interests. It cannot conceivably be in his best religious interests – it is surely arrogant of the Judge to think it possibly can be. And as for social interests ‘whatever they may be’ (can a judge ever have expressed himself more imprecisely!), the judge was aware of Re E .70 He quotes it and knows full well that the likely end of P will be the same as E’s. Indeed, it is distinctly possible that no episode requiring the administration of blood will occur until after the eighteenth birthday, at which point the order can have no effect. Twelve years after Re R judges are now so little troubled by the implications of what they are doing that a judgment can be given which mentions neither Gillick nor the 1969 Act and ignores the fact that the ‘child’ was clearly competent. And this despite the advances in the law relating to competence in the years between Re R and Re P. It is as if Re C 71 and St George’s Healthcare NHS Trust v. S 72 had never been decided.

Some Critical Observations A child can say ‘yes’ to medical treatment but cannot say ‘no’. This is the simple, indeed trite, conclusion to which one comes after an examination of the cases. Of course, a child can only agree to treatment a doctor is prepared to give and the assumption must be that clinical judgement will dictate that only treatment in the potential patient’s best interests will be on offer. On the other hand, refusal involves a rejection of what ‘doctor thinks best’ and harm may be a likely consequence. This may be an underlying rationale of the jurisprudence contained in the cases. Nevertheless, it is a concern with the doctor’s interest rather than the child patient’s rights which emerges as a dominant consideration. I believe the retreat from Gillick is wrong. First, because it exposes the pretence that is competence. Not only are courts – and it may be supposed doctors also – reluctant to ﬁnd a child competent to the point of imposing more stringent requirements than are imposed on adults, but it is clear that competence is irrelevant where the really important questions are addressed.

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Secondly, the retreat from the principle of Gillick and the express norms contained in the 1969 Act betrays a hypocrisy which is likely to undermine young people’s trust in the law and in the medical profession. I have not addressed the implications of these cases for the law on medical conﬁdences,73 but it is obvious that these too are badly dented by them. Thirdly, the law now discriminates and does so on grounds of age when the clear intention of the highest court in Gillick was to adopt a functional, rather than a status-based, approach.74 An elderly schizophrenic in Broadmoor can refuse treatment: an intelligent 15-year-old girl cannot. And treatment can be imposed upon her using force if necessary. Fourthly, the law as now formulated makes a clear distinction between accepting and refusing treatment, but the distinction itself is not clear. For example, it may be that there are alternative treatments and that the adolescent wishes to agree to one form of treatment but that the doctor wishes to treat differently. In the ‘Broadmoor’ case just referred to, the patient was agreeable to more conservative treatment than the recommended amputation of a leg. Or suppose the adolescent is prepared to consent to experimental treatment but the doctor is not prepared to take this risk and only offers conventional treatment which she refuses.75 Fifthly, the retreat from Gillick runs counter to the philosophy of the Children Act 1989, which in speciﬁed areas, makes it clear that children can object to medical and psychiatric examination, assessment and treatment. Re R and Re W and their progeny have been criticised76 but these decisions have their defenders too (Fortin, 2003). Some77 of those who defend the retreat from Gillick rely on a line of reasoning which I argued for back in 1983 in The Rights and Wrongs of Children. Adopting a Rawlsian approach (Rawls, 1971) I argued what sorts of action or conduct would we wish as children, to be shielded against on the assumption that we would want to mature to a rationally autonomous adulthood and be capable of deciding our own system of ends as free and rational beings? We would choose those principles that would enable children to mature to independent adulthood. (Freeman 1983, 57)

Both Lowe and Juss (1993) and Gillian Douglas (1993) adopt this approach. Thus Lowe and Juss argue that ‘it is surely right for the law to be reluctant to allow a child of whatever age to be able to veto treatment designed for his or her beneﬁt, particularly if a refusal would lead to the child’s death or permanent damage’ (Lowe and Juss 1993, 865). And Douglas assumes that if my ‘liberal paternalism’ approach is adopted, the child patient can be held to be ‘not mature’ and her decision accordingly overridden (Douglas 1993, 868). Would she permit a Gillick-competent child to reject medical treatment if that would prevent him/her from reaching ‘independent adulthood’? I doubt it.

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Would it not be better to see a 15-year-old like that in Re M as already ‘capable of deciding [her] own system of ends as [a] free and rational being’? Or to do the same with the 16-year-old anorexic in Re W? It is surely the case that someone so capable is actually beyond what is required to satisfy Gillickcompetence. Indeed, Brazier and Bridge, in an important article argue very much along these lines. The test they propose is ‘maximal autonomy’ rather than ‘competence’. They say If the law is to operate a truly functional test of autonomy, and not rely on outcome to vitiate decisions society judges imprudent, a presumption has to be made that adults not afﬂicted by mental disability possess the strength of character to make their own choices, to prioritise their own interests. The younger the individual the less that presumption may accord with reality . . . As long as minority necessarily imposes a degree of dependency on the minor, and until, in the vast majority of cases, the hormonal disturbances of adolescents are safely in the past, society might well adopt a sceptical approach to autonomy. Rather than presuming autonomy, decision makers should satisfy themselves that a choice is maximally autonomous. (Brazier and Bridge 1996, 109)78

Were the adolescents in the cases we have been considering sufﬁciently autonomous to make choices which should accordingly not have been gainsaid? E, W and M I think were: there might be doubts about the others. But the question we need to ask is not what the adolescents in these cases know – there should be less talk of knowledge and understanding – but how the decisions they came to further their goods and cohere with their system of values. One lesson we can draw from the retreat from Gillick is that Gillick itself may need to be reformulated. That this is unlikely,79 given the scepticism the Gillick decision now apparently engenders, is a sad reﬂection on our times and an indictment on the case law post-Gillick which is itself partly responsible for a negative image of adolescence.80

Notes Gillick v. West Norfolk and Wisbech Area Health Authority [1986] AC 112. The Children Act 1989: on which see Michael Freeman, 1992 and Jeremy Roche, 2002. 3 The United Nations Convention on the Rights of the Child 1989. See Geraldine Van Bueren, 1995. More directly on health issues Priscilla Alderson (2002) may be consulted. 4 See note 1. 5 To all sorts of questions including punishment (the question has been raised as to whether a Gillick-competent child can be punished), schooling and accommodation. 6 Re W [1992] 4 All E R 627, 634. 7 Re R [1992] 1 FLR 190, 199. 1 2

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See e.g. Hoggett, B, 1981, 12; Bromley 1987, 275. An interpretation which had a lot of support at the time. Lord Scarman’s words in Gillick v. West Norfolk and Wisbech AHA [1986] A C 112,

186. And see Michael Jones, 1986, 41. See Re W [1993] Fam 64, 81. 13 See Re C [1997] 2 FLR 180, 195. 14 See A Metropolitan Borough Council v. AB [1997] 1 FLR 767. 15 See Freeman, 1992. 16 They are in s.38(6) (interim care or interim supervision order), s.43(8) (child assessment order), s.44(7) (emergency protection order), and paras. 4(4)(a) and s.5(a) of Schedule 3 (supervision order). One of these provisions has since been interpreted – quite contrary to the meaning of the words used and Parliamentary intention – rather in the spirit of Re R and Re W. See South Glamorgan County Council v. W and B [1993] 1 FLR 574. And see Kennedy and Grubb (2004), 235. 17 Para. 5(5)(a) of Schedule 3. 18 Neither of the two judges who addresses these provisions does so other than cursorily. Lord Donaldson notes that the provisions ‘do not impinge upon the jurisdiction of the court to make prohibited steps or speciﬁc issue orders’ (where there is no power of veto). Neither of their orders was anyway relevant here. And Balcombe L.J. sees the provisions merely as an application of the test (in s.1(1) of the 1989 Children Act) that the welfare of the child is the paramount consideration. See Re W [1992] 4 All E R 627, 638 and 643. 19 Under s.33(3) of the Children Act 1989. 20 See Cretney, 1990. 21 Children Act 1989 s.100(3), (4)(b). 22 Children Act 1989, s.22(4)(a), 5(a). 23 Children Act 1989, s.1(3)(a). 24 Section 8 applications are for residence orders, contact orders, speciﬁc issue orders and prohibited steps orders. 25 Part IV orders are public orders, notably care and supervision orders. 26 It is then reported as Re J (see The Times, 14 May 1992). 27 [1993] 4 All E R 627, 647. 28 Anti-psychotic drugs. 29 Her status is not entirely clear. She had originally been received into care. An interim care order was made subsequently, but it does not appear that a care order was ever made. 30 [1992] 1 FLR 190, 202. 31 A battery. 32 [1992] 1 FLR 190, 196. 33 See below, 207. He substituted the metaphor of the ‘ﬂak jacket’. 34 [1992] 1 FLR 190, 196. 35 Ibid. 36 Ibid., 197–198. 37 Ibid., 206. 38 See Children Act 1989 s.1(1). In Re D [1977] Fam 158 Dunn J. referred to the welfare of the child as the ‘golden thread’ running through wardship. 39 [1992] 4 All E R 627, 629 per Lord Donaldson M.R. 40 [1992] 4 All E R 627, 641. The quotation from Farquharson L.J. is in Re R at [1992] 1 FLR 190, 206. 11

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[1992] 4 All E R 627, 643. A good example is Re S [1993] 2 FLR 437. 43 [1988] A C 199. For a critique see Freeman, 1988. 44 [1992] 4 All E R 627, 635. For criticisms of the keyholder metaphor see Bainham, A., 1992. 45 [1992] 4 All E R 627, 635–636. See also Balcombe L.J. at 644–645. On abortion see Lee, E., 2004. See also Herring, J., 1997. And on these issues in the U.S. see Guggenheim, M., 2002. 46 Re D [1976] Fam 185. 47 See Freeman, M. 1997, 48 [1992] 4 All E R 627, 639–640. 49 See Delfos, M.F. 2002. 50 Ibid., 88. But see Giordano, S. (2005). 51 [1993] 1 FLR 386. 52 This is revealed in Re S [1994] 2 FLR 1065 and also in Re P [2004] 2 FLR 1117. 53 [1994] 2 FLR 1065. 54 Ibid., 1072. 55 Ibid., 1068. 56 Ibid., 1076. 57 Ibid. 58 [1998] 2 FLR 810. 59 Ibid., 812. 60 Ibid., 813. 61 A point rightly emphasised by Ian Kennedy and Andrew Grubb (2004). 62 True consent must be informed consent. 63 [1999] 2 FLR 1097. 64 Ibid., 1099. 65 [2004] 2 FLR 1117 66 Ibid., 1119. 67 Ibid. 68 [1992] 4 All E R 627. 69 [2004] 2 FLR 1117, 1120. 70 [1993] 1 FLR 386. referred to above at 209. 71 [1994] 1 All E R 819: the court respected the right of a paranoid schizophrenic killer in a secure mental hospital to refuse an amputation of his leg to cure potentially fatal gangrene. See also Re B [2002] 2 All E R 449 and Re J T [1998] 1 FLR 48. 72 St George’s Healthcare NHS Trust v. S [1999] Fam 26. A competent woman can refuse a Caesarean even if it puts her and her unborn child’s life in jeopardy. 73 But it is not clear what obligation of conﬁdence a doctor has to a child, whether Gillick competent or not. 74 See Skegg, 1984, 49–56. 75 As in Simms v. Simms, A v. A [2003] Fam 83. On experimental treatment see Nicholson, 1990. 76 For example, Brazier, 2003; Bainham, 1992, p. 194; Lewis, 2001. 77 Lowe and Juss, 1993; Douglas, 1993. 78 See also Bridge, 1999, pp. 592–4. 79 But see the interesting interpretation of the Crime and Disorder Act 1998 by Barry Vaughan, 2000. He argues that rather than castigating the Act we should see it as one which encourages youths to take greater responsibility for their actions and to attach themselves 41 42

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to an emotional community. The young must become active citizens, taking charge of their lives (albeit in accordance with the wishes of others). It is only those who do not do so who will bear the brunt of the coercion which is, of course, so evident in the Act. 80 I have not addressed the Dutch euthanasia issue, deliberately. A good account is Leenen, 2002. See also Mannaerts and Mortier in this collection.

References Alderson, P. (2002) ‘Young Children’s Health Care Rights and Consent’ in Franklin, B. (ed.) The New Handbook of Children’s Rights, Routledge, pp. 155–167. Bainham, A. (1992) ‘The Judge and the Competent Minor’, 108 Law Quarterly Review 194–200. B.M.A. (2001) Consent, Rights and Choices in Health Care for Children and Young People, BMJ Books. Brazier, M. (2003) Medicine, Patients and the Law, Penguin Books (3rd edition). Brazier, M. and Bridge, C. (1996) ‘Coercion or Caring: Analysing Adolescent Autonomy’, Legal Studies 16, 84–109. Bridge, C. (1999) ‘Religious Beliefs and Teenage Refusal of Medical Treatment’, Modern Law Review 62, 585–594. Bromley, P. (1987) Family Law, Butterworths. Bruch, H. (1974) Eating Disorders, Routledge, Kegan Paul. Coleman, J. (1993) ‘Understanding Adolescence Today: A Review’, Children and Society 7, 137–141. Cretney, S. (1990) ‘Deﬁning The Limits of State Intervention: The Child and the Courts’ in Freestone, D. (ed.) Children and the Law, Hull University Press, Hull. Delfos, M.F. (2002) ‘The Developmental Damage To Children As a Result of the Violation of Their Rights’ in Willems, J.C.M., Developmental and Autonomy Rights for Children, Intersentia, pp. 47–68. Douglas, G. (1993) ‘The Retreat From Gillick’, Modern Law Review 55, 569–576. Eekelaar, J. and Dingwall, R. (1990) The Reform of Child Care Law: A Practical Guide, Routledge. Fortin, J. (2003) Children’s Rights and the Developing Law (2nd edition), Butterworths. Freeman, M. (1983) The Rights and Wrongs of Children, Frances Pinter. ——— (1988) ‘Sterilising The Mentally Handicapped’ in Freeman, M. (ed.) Medicine, Ethics and the Law, Stevens. ——— (1992(a)) ‘In The Child’s Best Interests? Reading The Children Act Critically’ Current Legal Problems, 45 (1) (Annual Review) 173–211. ——— (1992(b)) Children, Their Families and the Law, Macmillan. ——— (1997) The Moral Status of Children, Martinus Nijhoff Publishers, Chapter 2. Giordano, S. (2005) ‘Anorexia Nervosa and its Moral Foundations’ International Journal of Children’s Rights, 13, pp. 145–156. Guggenheim, M. (2002) ‘Minor Rights: The Adolescent Abortion Cases’, Hofstra Law Review 30, pp. 589–646. Herring, J. (1997) ‘Children’s Abortion Rights’, Medical Law Review 5, pp. 257–268. Hoggett, B. (1981) Parents and Children, Sweet and Maxwell. Jones, M. (1986) ‘Consent to Medical Treatment by Minors After Gillick’, Professional Negligence 2, 41–45.

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Kennedy, I. and Grubb, A. (2004) Principles of Medical Law (2nd edition), Oxford University Press. Lee, E. (2004) ‘Young Women, Pregnancy and Abortion in Britain: A Discussion of “Law In Practice”, International Journal of Law, Policy and the Family 18, pp. 283–304. Leenen, C. (2002) ‘Children’s Rights and the Dutch Termination of Life on Request and Assisted Suicide (review Procedures) Act in Willems, J.C.M., Developmental and Autonomy Rights for Children, Intersentia. Lewis, P. (2001) ‘The Medical Treatment of Children’ in Julia Fionda (ed.) Legal Concepts of Childhood, Hart, pp. 151–163. Lowe, N. and Juss, S. (1993) ‘Medical Treatment–Pragmatism and the Search for Principle’, Modern Law Review 56, 865–872. Nicholson, R. (1990) Medical Research With Children: Ethics, Law and Practice, Oxford University Press. Rawls, J. (1971) A Theory of Justice, Harvard University Press. Roche, J. (2002) ‘The Children Act and Children’s Rights: A Critical Reassessment’ in Franklin, B. (ed.) The New Handbook of Children’s Rights, Routledge, pp. 60–80. Seymour, J. ‘An “Uncontrollable” Child: A Case Study in Children’s and Parents’ Rights’ in P. Alston, S. Parker and J. Seymour (eds.) Children, Rights and the Law, Oxford University Press, pp. 98–118. Skegg, P.D.G. (1984) Law, Ethics and Medicine, Clarendon Press. Thomas, N. (2000) Children, Family and the State, The Policy Press. Van Bueren, G. (1995) The International Law on The Rights of The Child, Martinus Nijhoff. Yamamoto, K., Soliman, A., Parsons, J. and Davis, O.L. (1987) ‘Voices In Unison – Stressful Events in Lives of Children in Six Countries’Journal of Child Psychology and Psychiatry 28.

Frail Connections: Legal and Psychiatric Knowledge Practices in U.S. Adjudication over Organ Donations by Children and Incompetent Adults MARIE-ANDRÉE JACOB Cornell University

1. Introduction Reproductive as well as organ transplant technologies are often debated today in the language of “gift-giving” and “saving life”. One example of the latter is the emerging expression “saviour sibling,” used by the medical professions in reference to an embryo conceived and selected by its parents speciﬁcally to be an organ or tissue donor for an ill sibling. The category and rhetoric of giftgiving, on their part, are not new to the realm of organ donations among family members (Simmons et al. 1977; Thomson, 2001; Franklin et al., 2003). But if the technologically assisted conception of a child for purposes of organ donation is relatively recent, the use of children as organ suppliers is not. This paper traces a number of U.S. cases involving children and also incompetent adults as organ donors for a family member. Inspired by Mariana Valverde’s approach, I focus on aspects that, instead of being located under the label of “the principles,” pertain to the evidence and rhetoric used in legal texts (Valverde, 2003a). Today, much of legal and bioethical literature is devoted to the substantive values – e.g. deontology, utilitarianism, communitarianism – that inform and should inform the debates on organ transplantations. However, very little attention is paid to the manner in which these debates and discussions unfold – for example, on their rhetorical style or their use of evidence. In reaction to this, I wish to investigate how legal actors come to argue, determine and reform what is good, acceptable, or illegitimate use of medical technologies, and how they explicate and provide justiﬁcation to their knowledge. This paper tries to employ this general method of inquiry, while examining the narrow issue of organ procurement from the bodies of children and incompetent adults. This paper looks at the law as it articulates and reorders so-called “new” problems provoked by organ transplant technology, and more particularly, as it integrates psychiatric knowledge in its thinking about these problems. As if the decisions were artefacts or “works of ﬁction,” (Kahn, 1999, 126) I devote considerable time to investigating their style and format. I also look at their surface, and at what is considered mundane in them. Michael Freeman (Ed.), Children’s Health and Children’s Rights, 219–253. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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In the second section of this paper, I outline the conditions of twentieth century U.S. law that arguably made it porous to social sciences and psychiatric evidence in the ﬁrst place. I will modulate this view with Gunther Teubner’s idea of the law as a self-referential system (Teubner, 1993). In order to illustrate the theoretical moves I make in the ﬁrst section, I describe and analyse a number of cases. First, I examine the earlier cases in the area, which condemn organ donations involving minors, and then move on to describe one of the features that contributed to normalizing donations by minors and incompetents in case-law: the use of psychiatric experts. As will be seen, these cases interest me for the way they build-up and deploy a certain rhetoric. Subsequently, I analyse how psychiatrists came to be recognized as experts in organ donation cases. I end this paper by asking and attempting to respond to a question that cannot be overstated: did psychiatric expertise really have a genuine impact on the law in cases involving children and incompetent adults as organ donors? But before that, I would like to start with a caveat, and a note on my use of terminology. The limitations of this paper are clear. It reviews U.S. cases exclusively; hence it does not pretend to offer an international or comparative perspective on the utilization of psychiatrists in organ donations adjudication. The methodology favours the microscope over the telescope. Yet, by looking closely at a number of cases from one jurisdiction, the paper may offer some groundwork for future comparative studies focusing on the types of evidence used in organ donation law and policy. In terms of terminology, in this paper I try – not without difﬁculty- not to feed the reader with dramatic images. I want to avoid speaking of ungrateful children who refuse to offer a gift to a vulnerable ill sibling, and alternatively, of fragile incompetent individuals who are being exploited by a vampire-like medical community and cruel family members for whom ends justify all means. The subject is a sticky matter, which has its proponents and opponents, and attracts much media and academic attention. Therefore, in the literature, the positions advocated follow polarized patterns, which often lead to sterile debates. The subject matter also has its own jargon, which makes itself available for both “proponents” and “opponents”. This jargon includes the following bipolar lexicon: Persons: organ donors/givers/heroes Relations: donation/gift/exchange Objects: gift/“gift of life”/donations

organ suppliers/providers/sources; harvest/salvage/pluck/recycle/steal; VS spare parts/matters/replacement parts. VS VS

The lexicon available for anyone who wants to write about this subject is roughly limited to these. The use of words, from one group or another, inevitably drags the writer in one clan or another. Interestingly, those at the receiving end of the transplant world seem immune from either colourful or insolent depictions. They are termed “donees,” “hosts,” or “recipients” more

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or less randomly. Perhaps this is not unrelated to the fact that they often seem to be frozen in some continuous state of necessity that leaves no room for debate. For my part, I will use the above listed terms indifferently and randomly, hoping to give neither an accusatory nor a celebratory tone to the story.

2. The Ambient Judiciary Culture and “Rationality” In the early Twentieth century case Buck v. Bell (274 U.S. 200 (1927)) the U.S. Supreme Court upheld a statute authorizing the sterilization of the “feeble minded” in cases where it was “deemed reasonable” by hospital authorities. Justice Holmes, writing for the Court, had taken an unsurprisingly pragmatic approach to the problem, showing his practical concern for the greater good of society. He had declared “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unﬁt from continuing their kind” (Buck 207). He also implicitly espoused Social Darwinism in his descriptive and normative reﬂections about the case. According to this scheme, the stronger and healthier do and should better ﬂourish, and the weaker do and should gradually vanish or, despite the tenets of genetic determinism, become stronger – again, provided it is biologically and socially feasible. According to Paul Rosen, Holmes’ personal experience as a war veteran (Rosen, 1972, 28) informed his opinion in Buck. Using extra-legal language, knowledge, and reasoning in an effort to be realistic and practical, Holmes deduced that if public welfare require the elite members of society to make great sacriﬁces, “it would be strange if it could not call upon those who already sap the strength of the State for these lesser sacriﬁces . . . in order to prevent our being swamped with incompetence” (Buck 207). I am asking how are we to understand Holmes’ words? What sort of intellectual climate contributed to make what is done in Buck v. Bell doable? With the rising popularity in the legal milieu, at the end of the Nineteenth century, of the sociological jurisprudence movement, and later, legal realism, American courts gradually became interested in not only legal information and concepts, but also “all matters of general knowledge” (Muller v. Oregon 208 U.S. 412 (1908); Nowlin, 2003, 25–28). The so-called pure science of legal formalism would eventually be termed “mechanical jurisprudence” (Pound, 1968), or “transcendental nonsense” (Cohen, 1935). Indeed, everything real the court “sees as ﬁt” could inform judicial decisions, and it became gradually accepted that the law should follow the facts rather than predict or invent them. In Holden v. Hardy (1969 US 366 (1898)), US Supreme Court Justice Brown stated that the Court could be guided by the “general experience of mankind.”

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With this wording, Justice Brown seems to be referring more to commonsensical than strictly expert knowledge. In this sense, he is as pragmatic, but less technocratic than his successors. In Muller a statute limiting the working hours for women to ten hours a day was deemed constitutional on the basis of sociological evidence that women have different physical capacities than men. Justice Brewer based his decision on a brief prepared by the then creative advocate Louis Brandeis. Brandeis’ brief was ﬁlled with social scientiﬁc data – rather than the language of “general experience” invoked by Justice Brown – supporting the view that women were dependant on men, and that the a woman is not equal to her brother in the daily quest for subsistence. These data, which the court found persuasive, were typical of the trendy social sciences disciplines of the time. Their attractiveness resided in their providing to “knowledge” about women’s physical capacity – a ﬁeld otherwise poor if not inexistent – an aura of plausibility and rationality which leading legal thinkers of the time treasured. Pound and Holmes, for example, both generally dreamed of more technocratic law, and thought lawyers and judges should look at economics, sociology and philosophy to advocate law reforms and resolve legal conundrums. Most of all, though, the two shared an aversion for arrogant judicial thinking not in line with their vision of the world (Nowlin, 2003, 53–4). The sociological jurisprudence movement is often represented as a progressivist vision and programme for law and its institutions. It arose in parallel with another school or movement, American pragmatism. As put by Patrick Deneen, pragmatists hold a “commitment to reform without apparent claim that reform represents any devotion to the ideals or ideal of perfection, truth, or transcendent reality” (Deenen, 2003, 9). Pragmatism shares with sociological jurisprudence an interest in extra-legal knowledge, and an understanding of law as “instrument” (Ferrarese, 1997, 159). In line with the early legal realism, pragmatism is more populist a movement; it is less under the spell of social sciences experts, and less inclined to rely on them and on other technocrats, as tools to inform solutions to contemporary legal and other problems. Even though science often had a great, and substantively excellent, inﬂuence on court decisions, the public utility of science is not necessarily connected to its validity. Many ideologically inspired scientiﬁc theories effectively informing the law are later found to be ﬂawed. In other instances, the speciﬁc application of a scientiﬁc theory in a given area is discarded. For example, during the Nineteenth century, Social Darwinism became popular among social scientists in the United States. The adaptation of animal biology paradigms to patterns and norms of human behaviour allowed the application of concepts of universal competition, adaptability and the survival of the ﬁttest, to the empirical study of humans and to the realm of policy-making and courts. In these spheres, Social Darwinism metamorphosed itself into liberalism, economic

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laissez-faire, and racist and supremacist rules and institutions. This might be what gave us Buck v. Bell. The rational and practical modes of thinking that characterize legal realism and pragmatism are unquestionably assumed to be in binary opposition to the moralism of legal formalism. It is as if the more the law is immersed with pragmatic and technocratic information, the less moralistic it becomes (Valverde 2003b, 98). The above exempliﬁes well the doubtful character of this dichotomy. Thomas Gieryn makes a similar observation with regard to science and ideology, which, according to him, are mistakenly perceived as being part of a zero-sum relationship (Gieryn, 1983, 783). As Martha Fineman reminds us, much of social science literature, while regarded as objective and neutral, may in fact be inherently political and/or ideological (Fineman, 1990, 110). It is true that courts happily admit statistical and scientiﬁc data as evidence, but the introduction of such expertise did not eclipse “the power for old legal objects” (Valverde 2003b, 98). Further, as I mentioned earlier, many perceive legal realism as inherently connected to progressive social change. Yet one must candidly admit that skilful lawyers can use social sciences data, à la Brandeis brief, to advance virtually any imaginable cause. In the mid-ﬁfties, the school desegregation case Brown v. Board of Education 347 US 483 (1954) appears as one of the most representative cases of the judicial utilization of evidence provided by psychologists, psychiatrists and social scientists. The evidence presented in that case demonstrated that school segregation gravely injured the morale and sense of self-esteem of African American students and hampered their learning process. Basing its decision on the ﬁndings of psychologists and using mental health and social sciences precepts, the Supreme Court concluded that: Today, education is perhaps the most important function of state and local governments . . . it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity, where the State has to undertaken to provide it, is a right which must be made available to all on equal terms (Brown 493).

Some commentators of the Brown case were bothered by the fact that it is mainly on the basis of psychiatric testimonies, rather than legal principles, that school segregation came to be understood as a forbidden form of inequality under the fourteenth Amendment (Cahn, 1955, 157–9). At the time Brown was decided, social psychologists shared a relatively liberal and egalitarian approach, which favoured the abolition of school segregation. Yet, the academic milieu of social sciences, psychiatry and psychology might change, and for example revert to “the ethnic mysticism” (Cahn, 1955, 167) of the recent past. Consider the impact racist psychologists’ or psychiatrists’ testimonies could have to constitutional rights, warns legal scholar Edmond Cahn.

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Cahn and others worry that certain social practices, like the perpetration of inequality, could grow to be perceived as legally wrong only when they are demonstrably harmful under the discourse of social sciences, psychology and psychiatry. Law, due to its reliance on scientiﬁc opinion, could develop a sort of addictive dependency to scientiﬁc data. This would prevent the law from grounding its normative moves “on its own”. A legal argument will thus be handicapped, that is, less convincing, if based on something other than an external scientiﬁc justiﬁcation. Since in legal milieu, scientiﬁc data and expert opinions have the tendency to be clothed as truth claims, it has quickly become difﬁcult to prove the irrationality or unreasonableness of a legal rule without having to resort to the discourse of science. Courts can become subdued by experts (Delgado and McAllen, 1982). Sheila Jasanoff shares this insight when she recently writes that judges have often employed the language of physicians and mimic their reasoning in cases discussing the use of new biomedical technologies (Jasanoff, 1997, 191). As a way to recapitulate the above discussion, I brieﬂy outline the main claims that I detected thus far. First, the law seems to have shifted from formalism to realism from the end of the nineteenth Century. Second, as a result, social science data has become increasingly relevant for lawmakers. Third, this shift in perspective might be problematic if the social science is ideologically regressive. Fourth, there is some evidence that those considered as realists – like Holmes – were in fact holding and expressing regressive views. Fifth, in any event, the assumption that a realist, instrumentalist view of the law is necessarily progressive is not necessarily true. Lastly, regardless of the problem of contingency of results of progressive versus regressive social science, some see a problem at the scale of principle, in the subordination of legal reasoning to scientiﬁc data. The latter claim, consistent with the views of authors like Cahn, may vaguely sound like nostalgia towards legal formalism. In fact, it might be more a reﬂection, or concern, about what it would mean for the law fully to rely on science to gain knowledge of what is “out there.” This anxiety grows out of a fantasy: that the law is actually capable of relying upon a discourse external to itself. This fantasy is based on a particular view of the law, which I will tackle in the next section.

3. Openness or Closure1 Toward Scientiﬁc Experts? Teubner and Self-Referentiality Despite that law de facto utilizes expert evidence in adjudication, the manner with which it does so may signal law’s inherent capacity, or lack thereof, to absorb extra-legal knowledge into its corpus of thinking. Is the law being trans-

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formed by extra-legal knowledge? How challenging is the discourse of psychiatry to the structure and the substance of the law? Do psychiatrists follow the law, that is, the already established norms with their terms, or do they radically reshape the problem at hand by imagining new components, or by “ungluing” and “repasting” them differently? Building on different approaches to the relationships between the legal and the extra-legal, and in particular on Gunther Teubner’s idea of self-referentiality of the law (Teubner, 1988; 1993), I wish to underline how limited the law’s genuine openness to social sciences and psychiatry might be. While I display scepticism towards the actual use and effect of extra-legal information on the law, I do not mean to take a nihilist stand against legal realism and the use of social science data in general, or to oppose propositions to implement scientiﬁcally inspired and scientiﬁcally informed progressive legal changes. I instead wish to examine as crudely as possible how the relationship between law and non-legal knowledge actually unfolds. In looking at how law responds to information procured by non-legal actors, one theory holds, that law moulds itself too much on extra-legal knowledge. Jasanoff, while pointing that law mimics science, nevertheless concedes that both law and science mutually co-construct and co-deconstruct each other, as competing, yet in many ways similar, ﬁelds of knowledge (Jasanoff, 1997). According to a similar view, the law would be too enthusiastic too soon about the new scientiﬁc techniques or expertises, (see for example Mnookin, 2001). A few decades ago, legal scholars such as Castel lamented that the law is lagging behind technology (Castel, 1968; see also Savage 1977), implying that law is and must be following technology. What is crucial here is an understanding that law and science are epistemologically compatible knowledge practices. This compatibility that makes the law porous to scientiﬁc knowledge becomes visible when one posits law and science together as against religion. Legal as well as scientiﬁc knowledge exist as the fruits of one’s labour, i.e., become knowledge after meaningfulness has been sought for arduously. These kinds of knowledge would deserve merit and respect, partially because it is ingrained in Western ideology that one may enjoy the fruit of and/or get credit for her own labour (Strathern, 1988). Religion, on the other hand, is a knowledge that has a revelatory character; it is revealed by God, not worked-up and enterprised-up by humans. The meritorious hard-working quest for legal knowledge is less reminiscent of the revelation of religious knowledge, than of science’s truth discovery. This may in turn contribute to the disrepute of religious ways of knowing in the legal systems of instrumentalist and technocratic societies. But this claim merely emphasizes religious knowledge’s lack of avowed inﬂuence on the law, without detailing further the real inﬂuence scientiﬁc knowledge has on law.

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Another view on the interaction of law and science is that of self-referentiality.2 Teubner’s theory of the law’s self-referentiality asserts that all extralegal knowledge has to be metamorphosed by legal thinking before it becomes recognizable and knowledgeable to the law (Teubner, 1993; 1996). If one takes seriously what Teubner is saying, then the law’s capacity to be inﬂuenced by “all matters of general knowledge,” as it was put in Muller seems impaired. I would like to give a brief explanation of the idea of self-referentiality, starting by saying what it is not. It is not a normative assessment of what the law should be. It is also not a neoliberal project that advocates deregulation and “less intervention” out of cynicism that the law of the welfare state cannot be informed by science. It also does not promote legal hegemony. Rather, the idea refers to a project interested in shedding some crude light on the law’s failure to be profoundly inﬂuenced by non-legal knowledge, and on the process of legalization, or “legal enslavement,” of normative and scientiﬁc production. The view of self-referentiality builds from there. Instead of calling for pessimism, it arguably calls for a radical rethinking of some conceptions that are currently held about the interface of law and science. For example, it conceives of the inﬂuence of science on law as a “modulation,” rather than a transformation (Teubner, 1993, 58). It warns against unexamined victorious and selfrighteous claim about perceived changes in the law. Building on the insights of post-structuralism (Culler, 1982), the idea of selfreferentiality starts from the premise that the law is a system that thinks on its own, i.e., independently from its individual participants, including judges, advocates, and parties. Individual agents do not think, craft and speak the law; it is the law that thinks, crafts and speaks individuals. Hence individuals are just contingent artefacts of the law. But even the most radical critiques of legal systems like Duncan Kennedy (1997) still end up individualizing law, and embody it in one decision-maker: the judge. They may not be willing to acknowledge, as Teubner does, the claim that the law itself actually “thinks” on its own, as a system (Luhmann, 1988). In Teubner’s view, the autonomous individual is spoken through the law and has no epistemological value per se. Self-referentiality is not claiming that law is not informed at all by extralegal knowledge. Rather, the law, as an autonomous epistemic system, selectively legitimates some, while excluding other, types of knowledge. It absorbs ideas from extra-legal ﬁelds – scientiﬁc or not – provided that these outsider discourses feed in its established structure (Teubner, 1988; 1993; 1996; King and Piper, 1995; Nelken, 2001). The legal and the social are two related spheres, but their relation is partial, and can productively be viewed as such. Several elements derive from this autonomization of the law. One dimension is that the law modiﬁes elements of daily life and transforms them in autonomous legal constructs. These constructs are tailored to ﬁt its autonomous and auto-referential cognitive processes (Teubner, 1996, 191). Examples

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include: contract, promissory note, testament and other institutional artefacts. What can be detected through these constructs is the actual creation of a parallel world. For example, social conﬂicts can trigger legal processes, but the law will translate them into “legally speciﬁc conﬂicts of expectations,” (Teubner 1993, 58; and see Latour 2002, 86–9) which have little to do with the initial social conﬂicts of the participants. The direct product of the social conﬂict may turn out to have an impact on the law, but its result is generally communicated in a form unrecognisable to the participants. Second, the law is self-sufﬁcient, and is engaged in continuous self-validation. This makes it hermetic to serious challenges such as the challenges posed by scientiﬁc discourse. These cannot be absorbed as wholes by the law. For example, the extent to which external knowledge innovations can penetrate the law depends on whether they can be formulated in terms of legal doctrine’s threshold of “relevance” (Teubner, 1993, 59). One can take notice too of the particular moments when law does seek for knowledge outside its own discourse. As Thomas Heller astutely points out, the law seems to look beyond itself and refer to theory “only in the liminal cases where the content of the settled practice comes into crisis” (Heller, 1985, 185), that is, when it feels an urgent need to recreate a lost internal coherence. Elegantly explaining the phenomenon, Valverde states that: Law manages to incorporate not only eyewitness evidence but other facts (e.g., scientiﬁc knowledge) into its own framework by transmuting such alien knowledge into legal formats and frameworks: this helpfully highlights the ways that law shapes the world that it then claims to adjudicate. (Valverde, 2003a, 6)

Note Teubner’s factual account of the situation, in contrast to the normative perspective of legal realism. Again, Teubner attempts to state crudely what it is, but does not claim that it must be so. While his project seems excitingly lucid, it has its shortcomings. Through his project to de-individualize the law, Teubner is lead to make broad generalizations about the “Law,” whereas the law is in fact experienced differently in the courtroom, government ofﬁces, private kitchens, and legal academia. For example, his account does not consider the possibility of the legal scholar carving her space between the world of law and the world of the “social,” or moving from one to another like a doubleagent, or mediating between the social and the law. That being said, I believe self-referentiality’s relevance is particularly crucial when looking at adjudication. Adjudication does work under strict procedural and evidential legalistic rules, and this setting accentuates the law’s self-referentiality. I will demonstrate this point further in the sections of this paper devoted to close reading of case law and the critical examination of the expertise of psychiatry. But let us turn back to the legal realists for a moment. While he applauded

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the result achieved by the Court in Brown, Cahn detected an awkward logical dilemma in the use of social sciences in court, pointing that it can easily be a double edge sword (Cahn, 1955, 53–4). How can we prove that authorities have acted contrary to justice and fairness if no expert is willing to show up in court or write a report in support of the claim for better justice, he asks? His question as to whether this dependency might be a problem in principle, might reveal certain nostalgia towards formalism. I addressed and complicated – yet not necessarily answered deﬁnitively – this question of nostalgia and fantasy about the law by introducing Teubner’s notion of self-referentiality. Now I would like to turn to some courts decisions and to their uses of psychiatric knowledge to justify the involvement of children and incompetent adults as organ donors on the basis of the best interest criterion. These cases are used to illustrate the general ways in which the law uses, and “translates” extra-knowledge in courts. I will ultimately try and verify whether, in this area, the law did become addicted to psychiatric expertise. In addition, I see the following cases as artefacts, fraught with interesting technical, procedural and mundane features, which I think, have too often been left unexamined. The characteristics of legal knowledge as it is produced in cases and commentaries interests me as much, if not more, than the pros and cons of particular legal doctrines. 4. Cases of Organ Procurement from Children and Incompetent Adults A. Starting on the Wrong Foot . . . The ﬁrst American judicial treatment of organ procurement involving a minor tells and reorders the story of young female servant Ethel Zaman, her employer, and her father. In Zaman v. Schultz 19 Pa. D. & C. 309 (C.P. 1933), it is the latter who brought an action in trespass before the Common Pleas Court of Pennsylvania. The father recovered damages for himself and Ethel by reason of an injury to his thirteen year old daughter. Ethel worked as a domestic for Mr. Herbert Pfuhl and his wife. On March 26, 1932, Herbert Pfuhl requested that Ethel go to the hospital where his wife had just been admitted. At the hospital, in Mrs. Pfuhl’s room, Ethel meets with defendant Dr. Charles Schultz. Schultz performs a blood test on Ethel’s ﬁnger, and then “quite a quantity of blood was taken from her arm” (Zaman 309). Three days later, the same scenario repeats. As a result, she is weakened, and suffers pain and inconvenience. At the outset, the court states the unprecedented nature of the case – where “blood is taken from a minor either with or without his or her consent for transfusion purposes” (Zaman 310). The court had not found precedents where blood had been taken from a minor, but had found precedents afﬁrming that before an operation can be per-

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formed on a minor, parental consent must ﬁrst be secured (Rishworth v. Moss et al., 191 S.W. 843 (1916 Tex. Civ. App.)) The court analogised those “operation cases” to the present blood transfusion case. Yet it did so only to a certain extent, as will be explained. The court is not interested in the minor’s consent as much as it is in the necessity to give parents an opportunity to accept or decline the procedure, and in the failure, in the instant case, to give Ethel’s parents the opportunity to decide. Parental consent was necessary, and here it was absent. The decision could have ended here. But the court shifts gear, and puts aside the authorities cited so far, for all of them were about “medical operations” that were in the opinion of those who operated, “for the beneﬁt of the children.” Contrarily, the court argues in the present case, This operation, if it is to be called an operation, was not for the beneﬁt of Ethel Zaman, nor was it performed for the beneﬁt of her parents, nor could she be called a volunteer; and, as far as the evidence adduced in the case is concerned, there was no just cause why this girl should undergo the discomfort and annoyance which followed the taking of her blood for transfusion purposes [. . .] (Zaman 310)

As a reply to the defendant’s argument that this was a humane act on the part of Ethel, to which her parents should not object because it saved the life of Mrs. Pfuhl, the court points to the fact that Herbert Pfuhl is a “strong, healthy, robust man,” – that he is ﬁt for donation – and that there is no evidence that he offered to give blood to his wife. The court sees no reason why he has not made such a gesture. In this obiter, the court appears to have very clearly in mind what should be the parameters of a good and legitimate blood donation, but does not seem to be constrained by technical and scientiﬁc limitations on blood matching. No information is given about Mrs. Pfuhl and her robust husband’s blood matches. This technical, crucial issue is not addressed at all by the court. The court is either uninformed, or does not feel constrained by technical and scientiﬁc limitations. In any case, the court’s emphasis is solely on what it thinks is the right or just thing to do. The Zaman case is seldom referred to in the literature. Professor William Curran mentions it in 1959 in his article on kidney transplantation on minors (Curran, 1959, 892) but it is virtually absent in later literature on organ donation. Its absence from the literature on organ donation comes as a surprise, in light of the case’s dramatic and powerful narrative weight. I wish to say more on this before moving on to the next case. A story like Zaman could be seen as analogous to literary works like Huxley’s Brave New World or Shelley’s Frankenstein, in that it is a tale that can anticipate the content and tone of future policies on biomedical technologies. Science and Technology Studies (STS) scholars have theorized the idea that such stories from the realm of culture – court cases or newspaper clips – do not only mirror the “real” world of science, but imagine it beforehand and drive it (Franklin and Lock, 2003; Nerlich et al.,

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2003). Failing to see this aspect ignores that “the social precedes and is embedded in any kind of technoscientiﬁc project.” (Franklin and Lock, 2003, 4) Yet, these scholarly observations focus on the social embeddedness of technoscience in particular. In line with scholars who regard law as a kind of technoscience, (Latour, 2002; Riles, 2004) I regard legal rules themselves as artefacts that contain popular culture views and imaginations. In the Zaman story, the donor is a young female servant, the recipient her master. The donor is easily imagined as a poor worker, whose labour and body are exploited by zealous, white-clothed Dr. Schultz, and the wealthy, unscrupulous Pfuhl couple. In The Body as Property, Russell Scott reports a similar “horror tale” taking place in Italy in the 1930s, where a rich citizen bought the testicles of a poor Neapolitan, (Scott, 1981, 68) who, according to Scott’s story was, like Ethel, forced into the pact. Inspired by STS theorists, I think such “stories” can have an inﬂuence on the developments of policies, legal rules, and especially, in our case, on a suspicion that organ donation has the potential of being exploitative, and thus needs to be scrupulously legally monitored. An illustration of this is that the Italian case prompted the legislator to insert in the Italian Civil Code, a prohibition on the removal, from any living person of any part or organ of his body the loss of which would permanently diminish physical integrity. However, the law’s reactions to particular social practices of organ transplantation are not to be seen as uniform, as this paper tries to underline. While the Zaman case was classiﬁed as trespass, the next case I will discuss, Bonner v. Moran 126 F. 2d 121 (1941) is located under the rubric of “Assault and Battery.” It is the ﬁrst assessing the legality of the removal of skin for donation to a family member. At this point, I wish to mention brieﬂy how useful I ﬁnd it to trace how these cases are indexed in legal treatises. Indexes seems very instructive of how “new problems” are classiﬁed in “old boxes” – for example torts, contracts, medical jurisprudence, children’s law. Subject headings are not neutral classiﬁcatory tools that help researchers: they set the researchers’ agenda of the “topic”, while determining what sorts of questions are relevant for legal analysis. Thus I believe indexes and classiﬁcations have to be taken much more seriously than we legal scholars usually do. Hence a few words about them before getting to Bonner itself. The signiﬁcance of the distinct legal categories appears a simple, mundane matter of civil procedure. Here however, it precisely maps onto gender binaries. The Zaman trespass story is about a girl; the Bonner assault story about a boy. I do not intend to make a general claim on the basis of these two cases. Yet, through the technical labelling, what one sees is the image of the male subject, victim of an assault, contrasted with the image of the female object of property, whose father and owner is the victim of a trespass.3 Bonner is about a ﬁfteen year old “coloured boy” (sic) who “consented,”

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after being taken to the hospital by his aunt, to undergo a skin graft for the beneﬁt of his cousin, who is another nephew of the aunt. The district court instructed the jury that they had to decide the following: whether the minor was capable to consent; and if so, whether he evaluated the nature and consequences of the operation, and expressly or implicitly consented to the operation. The Court of Appeal reversed the district court decision on the basis of the correctness of the jury instructions given by the judge. The Court of Appeal held that the jury should have been instructed about the necessity of parental consent. Like what the court did in Zaman, the Bonner court reviews the authorities about medical procedures. These, “there can be no doubt”, constitute “technical battery” unless there is consent by the patient, says the court on the basis of the foundational American case establishing the right to control over one’s body as expressed through consent to medical treatment, Schloendorff v. Society of New York Hospital 211 N.Y. 125. When they are performed on minors, parents must consent to medical procedures, except in cases of emergency. The Court notes that if a child is capable to appreciate the “nature, extent, and consequences of the invasion” (Bonner 122), his assent prevents the invasion from leading to liability, despite his parents’ refusal. This is grounded on the idea that “the very nature of rights of personality is freedom to dispose of one’s person as one pleases” (Bonner 122). The court reviews the “infancy exception” to this rule, and the exception’s exception in case of emergency. However the Court ultimately distinguishes these questions from the instant one, on the basis that the surgical operation was not for the beneﬁt of the child, but for the beneﬁt of a third party. The Court concludes that this facet, combined with the complicated technique of the operation, rendered necessary a need for a “mature mind” to decide what the donor would give. In this case it was the aunt of the donor who initiated the process. Yet neither the maturity of her mind, nor the deﬁnition of a “mature mind” is elaborated on. In short, the mature mind is a parental mind, the court eludes implicitly. It was thus a mistake on the part of the district court judge not to instruct the jury about the necessity to obtain parental consent. In 1968, Jean-Gabriel Castel in his comments on Bonner sees its basic question as being about the beneﬁt to the child. In his view, in absence of such beneﬁt, “from a public policy point of view” it would be advisable to prohibit such operation, unless the court’s consent is obtained (Castel, 1968, 371). In other words, for Castel, the validation by courts per se turns what is against public policy into an acceptable act. This rhetorical device of regarding the passage into courts per se as a rite of normalization and justiﬁcation, seems typically self-referential, and is found in many cases and texts (Frank, 1963; Delgado and McAllen, 1982).

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Through Bonner, we learn that in law, the child’s consent to a medical procedure that is not in her medical interest is not sufﬁcient to justify the procedure. Parental consent is necessary, although it is not clear if it supplements or replaces the child’s consent. In addition, the following unexamined assumptions are found in both decisions: First, the parents of the child, if they had had the opportunity to decide, would have made the decision in the best interests of the child; and second, the best interests of the child in each case was to refuse participation in the procedure. Not to undergo an unnecessary medical procedure, and not to donate is understood as being in one’s best interest. This stands as true regardless of whether the recipient is one’s employer or one’s cousin. I use the two decisions to typify the tone of the legal discourse about organ donation involving minors. The tone is condemnatory, undoubtedly because the parents were not polled, but also because if they had been, they would not have accepted the invasion. The explicit and implicit emphasis placed on parental support is important to keep in mind, in light of the cases examined later in this paper. Since the 1960s, the selection and screening processes of donors and recipients that occur in health care facilities has received validation in the courtrooms – in some cases when children and incompetent are suggested as donors (Shartle, 2000). In the courts, there has been a trend to allow such transplants (but see In Re Richardson 284 So. 2d 185; In re Guardianship of Pescinski 67 Wis. 2d 4). Multiple factors have contributed to this shift. One possible explanation is that since science had routinized organ transplantation procedure, that is, had turned it from an experimental into an established treatment, social discourses and law, had to routinize the search for organs. This plausible assumption epitomizes well the general tendency to look for the solutions to legal and cultural questions pertaining to scientiﬁc developments, in the scientiﬁc developments themselves. Another factor might be that law began to be under pressure to allow more transplants, and to “stop blocking progress.” (Castel, 1968) However, I think so-called policy shifts – normalizing and problematizing the involvement of children and incompetent adults as organ donors – cannot be “explained” in any compelling fashion solely by looking into their substantive causes from the realm of bioethical discourse and principles. I think the phenomenon I am interested in can be better “explained” and be theorized, if the texts that create it – the court decisions, the law articles – are read closely, in order to answer the following: what kind of language and style is used to make decisions? What type of knowledge is used as evidence to substantiate the criteria for making the decisions? This is what I attempt to do in the next section.

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B. . . . And getting it right: The “grave emotional impact” doctrine The doctrine of “grave emotional impact” was brought over from psychiatry in trial court cases to justify inter-vivos organ transplantation involving children and incapacitated adults. For the purpose of this discussion, I will treat – in line with what most of the current literature in law and bioethics does – children and incompetent adults within the same single discrete category comprising of those who are deemed to lack competence. I am aware however, of the fallacy of the purported uniformity of this category, and of the complex distinctions that exist among types of incompetence (Elliott, 1998). In the 1950s, three cases in Massachusetts (Masden v. Harrison, No. 68651 Eq. Mass Sup. Jud. Ct, June 12, 1957; Huskey v. Harrison, No. 68666 Eq., Mass. Sup. Jud. Ct, Aug. 30, 1957; Foster v. Harrison, No. 68674 Eq., Mass. Sup. Jud. Ct, Nov. 20, 1957) endorsed the legality of living kidney donations by twin minors to their identical twin. These three cases were unreported, but are considered highly signiﬁcant, and they become part of the cited authorities in future cases in the area. An article on these three “homotransplantations” (Curran, 1959, 891) cases reports the facts at hand. The three decisions are almost identical. The ﬁrst and most important of the trilogy is the Masden case. The Masden case involves nineteen year-old twins, one of whom is ill from a kidney disease. His healthy twin brother had been fully informed about the procedure and had agreed to give a kidney to his brother. The parents of the twins had consented. At that time, Bonner held that parental consent was the controlling factor with respect to medical procedure to be provided to a minor. Yet, whereas it seemed clear that parental consent was necessary – either instead of or as a supplement to the consent of the child – it was unclear whether it was sufﬁcient in those non-treatment cases. Out of fear of potential liability towards the Masden family, the hospital trustees and surgical staff sought a declaratory judgment. The court gave weight to the consent of the parents, and of the minor twins, emphasizing that the nineteen year-old donor – though a minor – understood the nature of the procedure and its possible consequences (Curran, 1959). The court also found that the operation was necessary for the ill twin to survive. The clinching argument used by attorneys that led the court to favour the transplant of the kidney from a healthy minor to the body of his identical brother, was the idea, based on psychiatric expert evidence, that the healthy twin would “beneﬁt” from the procedure: if the operation was not performed and the ill twin would die, the court believed, it would have a “grave emotional impact” on the healthy twin. Masden, unlike further decisions, does not clarify whether the “grave emotional impact” is characterized by grief for the loss, or by guilt from having “caused” the loss. The psychological impact argument is used from Masden onwards in evaluating the beneﬁts and disadvantages of a transplant on a child donor, and is

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eventually extended to incapacitated adults in later cases. A commentator of the Massachusetts trilogy refers to the court’s use of psychiatric evidence to support its ﬁnding as a questionable “method” and “technique” (Curran, 1959), for it glosses in technical jargon a knowledge that should be mere judicial and lay commonsensical knowledge. That same critique has been made about the portion of the Brown case examining psychiatric evidence. I will get back to this point in part ﬁve. The Masden case prompts some further comments. First, note the psychiatrist’s blurring of the factual distinction between the death of the ill twin and the non-contribution of the healthy twin as organ donor. The fact of non-contribution of the healthy twin as organ donor is directly connected with the fact of death of the ill twin, making the healthy twin in a way responsible or guilty for the ill twin’s death should the transplant procedure not be performed. This connection is apparently practical and realistic to the expert. The offered demonstration of this connection, of the “raw facts,” does not consider, or even imagine, the possible erection of formal barriers – either moral or legal – that would impinge on the causality between the two facts. Both factual and normative questions arise here. Factually, the court does not question what would happen if the donation were made, but the transplant in the twin’s body failed because of rejection, i.e., the donor recipient died anyway. In this case, could the donation be regarded as indirectly hastening or causing death? In addition, the question as to whether death would be caused by failure to donate is not addressed. Normatively, should refusal to donate be considered the cause of death? In the ﬁrst published symposium on the law and the ethics of transplantation, biblical law scholar David Daube wrote on the topic of the grave emotional impact of not contributing to a transplant procedure (Daube, 1966). In this context, Daube attempts to bring about an antidote to the legal realist move to rely on a psychiatric precept to formulate a legal rule. He proposes the following formalist and deontological solution, which displays his deep faith in the ordering power of law to shape, not only expert behaviour and cognitive understanding of causality and phenomena, but also common sense. Daube, who believes children should not be used as organ suppliers, asserts that the probability of “grave emotional impact” would simply evaporate if the law maintained strict boundaries between what is permissible and what is not, leaving no shadow of doubt as to who can and cannot, or rather should or should not, donate an organ. That rule would apply in all cases, including when the potential recipient is an ill child suffering from pneumonia and needs her twin sister’s lung. In other words, the rule would apply unequivocally and consistently in all cases, including for example, when the donation of an organ is both most vital for the recipient and most risky for the donor. By referring to the case of lung transplants (where the stakes – possible beneﬁts and risks – are

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higher than in kidney and bone marrow donations) Daube seems to worry about the “slippery slope” of the grave emotional impact argument. His response ﬁts within a legal formalist framework; he mechanically applies the rule, and holds that the obligation to obey the rule is the superseding value, consistently with his deontological approach, regardless of the consequences. But here is the twist: Daube is a different kind of formalist. He is a formalist who actually is concerned about the consequences of the application of the legal rule. This arguably makes him a hybrid between a realist and a formalist. In his mind, there cannot be adverse consequences to the observance of the rule, but only favourable ones. Because the appreciation of “reality” is delineated by the rule, the feeling of guilt and powerlessness is left out of the depiction of reality. Thanks to a clear legal rule that marks out not only what is good or bad, but also what is possible or impossible, one cannot feel guilty, but only content, when she or he is following the rule. This is how Daube solves the problem of guilt-based grave emotional impact. Yet Daube fails to address the problem of grief. Assuming that factually, the non-donation prevents the survival of the ill twin, will the sentiment of having obeyed the law take precedence over the grief of loosing of a twin brother? The above elaboration shows how someone who is fretting about the participation of children as organ donors and who is also a deontologist responds to the grave emotional impact argument. A utilitarian legal realist opposed to that same phenomenon would use a different tactic, as we shall see later in the context of another judicial decision. In Strunk v. Strunk 445 S.W. 2d 145 (Ky 1969), the Kentucky Court of Appeal was asked whether a court of equity has the power to permit the removal of a kidney from Jerry Strunk, an “incompetent ward,” on the petition of his “committee,” for the purpose of donation to his ill brother Tommy. What is referred to as Jerry’s “committee” in the legal text, as one discovers later, is actually constituted by one member: his mother. Jerry’s mother-committee is also the mother of the potential recipient Tommy. The mother is presented to the court as a “committee” so that she gains not only a voice in that forum, but also credibility and the ability to use a valid procedural vehicle: the committee’s petition. This speaks of the law’s thinking. It may speak of its reticence to lend an ear to mothers’ anxious “demands,” and of its general enthusiasm towards various sorts of committees’ “statements” or “petitions.” Surprisingly enough, the court “covers” the mother and turns her into a valid committee, without adjudicating or even commenting on the substantive legal issues of ﬁduciary duty rules to prevent conﬂict of interests between Jerry’s mothercommittee and Tommy’s mother. The Strunk Court began its reasoning by emphasizing that the option of using incompetent, 36 year-old Jerry, as a kidney donor for his ill brother, was a last resort suggestion. In my opinion, this cautionary introduction is very

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signiﬁcant. It precedes, and remains outside of the substantive discussion, while resolutely determining its tone: an apologetic tone that emphasizes the exceptionalism of the procedure discussed. Let us note brieﬂy that the framing of issues as exceptional may precipitate their entry into legitimacy in a particularly efﬁcient manner. (Agamben, 1995; Franklin and Roberts, 2003). In Strunk, the county court had found the operation necessary and beneﬁcial for both Jerry and his ill brother: the well-being of Jerry, the incompetent, would be more jeopardized by the loss of his brother Tommy, 28, married, employed and part-time University student (Strunk 145) than by loss of one of his kidney. It concluded that it was in the best interests of the ward, that is, Jerry, that the procedure is carried out. The appeal from the county court decision was ﬁled on behalf of Jerry by his guardian ad litem, against his mother-committee. In the appeal proceedings, the Department of Health intervened in the already complex drama as the friend of the court, on the ground that it had a duty to take all possible steps to prevent a grave emotional impact: the guilty feelings Jerry would experience if Tommy died. The Department of Health recommended that Jerry undergo the surgery. The representative from the Department of Health also asserted that Jerry needed close intimacy with other men, and that this could be ﬁlled by a member of family. Tommy was the only living sibling, and the parents were aging. Tommy’s life is thus regarded as “a necessity to Jerry’s treatment.” (Strunk 147) In addition, the court afﬁrmed that Jerry had “emotions and reactions on a scale comparable to that of a normal person” and that he was “aware he plays a role in this the relief of this tension.” (Strunk 146) A majority of the Court of Appeal ultimately allowed the transplant to occur, and noted that only a court of chancery – like the Court of Appeal – had the competence to do so, but that neither a mother-committee, nor a county court, were competent to consent. It seems that the Court adjudicated on behalf of Jerry on the basis of his incompetence to make any decision, yet it presents Jerry as competent, from the point of view of his relationships to his brother and the rest of his family, to feel guilty. The discrepancy is tricky to understand, given that there are scientiﬁc experts on board. One would – perhaps mistakenly – expect the assessment of Jerry’s (in)competence to be scientiﬁcally the same regarding his abilities to decide and to feel guilt. Those who regard incompetence as an heterogeneous and not easily standardizable concept (see Alderson, 1992; Elliott, 1998) will agree with the Court that Jerry’s incompetence was neither uniform generally nor consistent in time. However, one wonders how those who are declared incompetent to decide on whether they wish to undergo a medical procedure, may on the other hand be construed as competent enough to experience the complicated feeling of guilt (Koury, 1970). In a grand dramatic gesture, the dissenting judge in Strunk refused to author-

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ize the transplant. Justice Steinfeld evokes the spectres of government programs of genocide and experimentation with human bodies as arguments for not allowing the participation of incompetent adults as donors in organ transplantation.4 He is unconvinced by the psychiatric ﬁndings about the possibility that Jerry would either beneﬁt from the transplant or feel guilt were there no transplant. Privileging commonsensical knowledge over the expertise of social sciences and psychiatry – he terms their ﬁndings “nebulous” – he asserts on the basis of “common knowledge beyond dispute” (Strunk 150) that the trauma of loosing a sibling at the age of 6 (the mental age of Jerry) is not major. He also points to the majority’s failure to mention the high probabilities of unsuccessful transplants. Manifestly, the rhetoric of the dissent is of a legal realist type. The dissenting judge does not trust experts, but relies on an undeﬁned notion of “common knowledge.” He could have used formalist and deontologist argument as those put forward by Daube. For example: donation requires competence and as a consequence, to the same extent that Tommy does not have a healthy kidney, Tommy does not have a competent brother who can donate. Further: to the same extent that Tommy is factually missing an extra, ﬁtting kidney to donate, Jerry is factually missing another essential element to donation: competence. The latter rhetoric is arguably “cold,” but what makes this type of formal logic “too cold” for the issues at stake? And why was it more suitable, in the eyes of the dissenting judge, to use slippery slope arguments and dramatic references to Nazi genocide programmes? It looks like dramatic hyperboles may be palatable for judges, yet only in order to rationalize their take on issues that are already fraught with dramatic images of bodies with all their symbolic weight. “Spectres” as visions are rarely invoked in real estate litigation. Aside from these rhetorical questions, many factual and evidential issues remain unexamined in the case. If it is in the best interest of Jerry that Tommy does not die, does it necessarily follow that a kidney ought to be removed from his body? (Lewis, 2002) Why didn’t the court mention anything about Jerry’s ability or inability to understand the procedure? Why was the psychiatric expert not asked to testify on Jerry’s agency and capacity or incapacity to consent? The court decision lacks understanding of Jerry’s cognitive and emotional state of mind. In addition, why is that from the court’s point of view, the expert is generating valid knowledge solely about the consequences of the alternatives of donation or non-donation? What about a more moral and deontological assessment, i.e. an evaluation of what might be, in the eye of a scientiﬁc expert, the right or moral thing to do? But then again, for courts, is there something so anguishing about asking the questions of what is inherently and ontologically right or wrong, that they have to go around them, and rather reduce otherwise agonizing debates to calculations and pragmatic questions? Lastly, what is the relationship between the “utility” of Jerry, and his alleged

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altruism and the potential for feeling guilt? A commentator of the decision muses that it is quite possible that underlying the court’s decision was . . . a balancing of the relative utility of two human lives; one healthy but incompetent and without responsibility, the other competent, married and critically ill. (Cronan, 1969, 315)

In a law article published soon after the decision, Joe Savage, the attorney for the petitioner mother-committee, sums up what the bargain was about. For the parents, it was the happy and satisfying end to a long and sometimes bitter struggle to aid one stricken son and at the same time make life more meaningful for a second one. For Jerry, it was the one opportunity in a life of dependence to be of real service to a person he loved. (Savage, 1969, 155)

Hence, the language is fraught with tensions between being useful or useless, meaningful or meaningless, thus perhaps sounding more like a committee’s than a Mother’s point of view.5 The transplant is constructed as a ritual of salvation for Jerry. Through this ritual, Jerry’s life would ﬁnally acquire meaning, and Jerry would convert from being useless to being useful. Literally, doesn’t “useful” mean “full with use”? To feel useful is fulﬁlling, and the available metaphor is that this ﬁlling – use – will ﬁll the hole left by his missing kidney. Turning back to the best interests assessment, I notice that the confusion within psychiatric expertise on the effects of transplants on donors ampliﬁes in light of later cases. In Hart v. Brown, 289 A.2d 386 (1972 Conn), the Superior Court of Connecticut upheld parental consent to the donation of a kidney from a seven year-old girl to her twin sister. After hearing testimonies from the donee’s doctors, psychiatrists, a clergyman, and the court-appointed guardian ad litem, the Court considered the psychiatric testimony of limited value “only because of the ages of the minors.” (Hart 390) Yet in Strunk, where the donor had a mental age of six, the testimony from the psychiatrist was given great weight. The Hart court was otherwise convinced that the organ donor would be less harmed by the loss of her kidney than by the loss of her sister. The court aimed to make “a close, independent and objective investigation of [the parents’] motivation and reasoning.” (Hart 390) The Hart Court based its holding on Strunk, mistakenly believing that Strunk had based its ruling on the substituted judgement doctrine, that is, on the legal ﬁction of what the judiciary thinks the incompetent would decide if she were competent to decide.6 The Hart court relied heavily on medical evidence about the chances of success of the transplant. The medical evidence established that this was a “perfect transplant.” (Hart 389) In addition, the court referred to the evidence of a psychiatrist and a clergyman, in order to charac-

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terize the decision for the organ donor as “beneﬁcial” to her, conﬂating the beneﬁt for the recipient and the beneﬁt for the donor: A psychiatrist who examined the donor gave testimony that the donor has strong identiﬁcation with her twin sister. He also testiﬁed that if the expected successful results are achieved they would be of immense beneﬁt to the donor because she would be better off in a family that was happy than in a family that was distressed and in that it would be a very great loss to her if the donee were to die from her illness (Hart 389).

Note the contrast between the depiction of a happy family, where the twin sister supplies an organ, and a distressed family, where the procurement does not occur. It is the option of non-donation itself that is represented as the potential cause for the family’s eventual unhappiness, rather than the death of a daughter. Here again, the factual connection between donation and death remains unchallenged.7 The illness and its distressing fatality are unquestionably and automatically to be prevented by a transplantation. Note that this assumes without intricacy that the transplants systematically do work and do save from death, but in 1960s, they did not (Lock, 2002). For his part, the clergyman in Hart – recognized as an expert in the ﬁeld of morality (Delgado and McAllen, 1982; Imwinkelried, 2003) – testiﬁed that the decision of the parents was “morally and ethically sound.” (Hart 391) The Connecticut Court relied heavily on this testimony of a religious nature, which in the circumstances it considered more valuable than the scientiﬁc knowledge provided by the psychiatric evaluation of the twin sister-donor. Why, in 1972, would the court prefer the clergyman to the shrink? Does it boil down to the individual judge’s religious make-up? I would like to hypothesize as an alternative, that what could have made the clergyman’s expertise more attractive in Hart was the normative nature of his expert testimony. In contrast to the psychiatrist who merely described consequences – however dreadful – the clergyman distinguished what is ethical and moral, and what is not. He tells them what should be done. This type of normative testimony, from the point of view of Delgado and McAllen, subverts the role of the judiciary, by usefully relieving the judge from her anxiety to settle tough cases. It can turn out to be useful for the judiciary to rely on the normative testimony of an expert, “effectively trading a difﬁcult moral choice for the simple choice of whether or not to follow the advice of a particular expert.” (Delgado and McAllen, 1982, 898) In addition to being a relief, the use of normative experts is also strategic. As put by Delgado and McAllen “courts utilize a number of symbolic and ritualistic devices for the purposes of reassuring society that they are acting soberly and responsibly.” (Delgado and Mc Allen, 1982, 900; and see Nader, 1968) The use of normative experts is one of these devices. It is likely that in the eye of the judiciary, a decision such as Hart is

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highly controversial and subject to criticisms. (This belief that the dilemmas in Hart or Strunk are “hotter potatoes” or more crisis-like, than the issues debated in other cases, is worth pausing. It obscures the fact that daily life’s “ordinary” cases are as fraught with binary visions about legality and justice as the “crisis” cases are.) In this context, the use of experts fosters societal trust in courts in general, and the acceptability and acceptance of a court’s particular decision. Aside from giving an illusion of infallibility, reliance on experts underemphasizes the risks of errors of judgments. Further, the judge might wish to look for a scapegoat. In the eventuality of an uproar, the judiciary who has relied on normative experts could blame them to avoid moral responsibility. This problem is part of the broader issue of the alleged over-reliance on experts for resolving moral problems. Departing from the “grave emotional impact” character of the best interest criterion, a state court used “parental support” as the decisive factor in a case where, interestingly, mutual parental support was absent. In Curran v Bosze 566 N.E.2d 1319 (Ill. 1990) (Supreme Ct of Illinois), the father of three year old twins sought to an order compelling the children to submit to bone marrow tests, and to give bone marrow to the twins’ half brother – the father’s child from another union – should either of them be a match. The mother of the twins refused to allow the procedure, and so does the court. For the court, the factors to consider in determining whether it is in the best interests of a child to donate are the following: whether the parent who consents on behalf of the child is informed of risks and beneﬁts of the procedure; whether there will be emotional support for the person/s who take care of the child; and whether there is a close relationship between donor and recipient (in this case the halfbrothers had met once). The court was also faced with the question whether it is in a child’s best interest to be “acting morally.” In this sense, the court clariﬁed that organ donation’s psychological beneﬁt derived from helping a family member concretely, not from “altruism in the abstract theoretical sense” (Curran 1343). Psychiatric evidence emphasized the necessity that the parent fully supports the procedure proposed in order for it to be in the child’s best interest. There is a shift away from the donors themselves and the possible guilt feelings they may experience: if the parent or parents who is/are the primary care-taker/s support non-donation by the child, then the child shall not, and in fact will not, feel guilt. One wonders whether this had something to do with the fact that Curran tackles organ donation in the context of a reconstituted, non traditionalnuclear family. Many experts – incidentally each of them having many ﬁelds of expertise! – testiﬁed in Curran. Permitted to give expert testimony in the ﬁeld of psychiatry, a transplant surgeon warns of the psychological risks for givers when the

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recipient rejects the donated organ, while underscoring that “altruism is in the best moral interests” (Curran, 1343). Permitted to testify about law, a physician gave expert opinion on the legal doctrines of parental rights to privacy and children autonomy. Wearing the generic robe of “expert”, the experts in Curran appear to be given the latitude to move from one discipline or technique to another, all under the umbrella discipline of “expertise” (see Fischer, 1990). Under evidence law (Columbia v. White, 442 A.2d 159 (D.C. 1982); Daubert v. Merrell Dow Pharmaceuticals 509 U.S. 579 (1993)), experts can testify on matters “beyond the ken of the average person” (Columbia 164). Given that judges are at least as knowledgeable about what’s in the scope of a lay person’s ken than physicians are about law, I am intrigued by the following paradox: how can the judge need expert knowledge about experiencing guilt, whereas the expert, in her box, can interdisciplinarily lecture about experiencing guilt, AND anti-rejection drugs, AND the doctrine of parental rights to privacy? In other words, was it excessive to hear expert testimonies in these cases? Yet, is the question of what is the emotional impact of loosing a family member, or of donating an organ to a sibling a matter for experts, that is, not accessible to lay persons, including judges? At this point, instead of offering a doctrinal synthesis of the rulings I have examined, I note the confusion as to what is the scope of “expertise” in the few cases examined, and build from there.

5. Reﬂections on The Psychiatrists As Experts In this section, I try to unpack the scientiﬁc role of psychiatric experts, and to emphasize psychiatric expertise’s internally “built-in” legal character and institutional posture. I do not attempt to debunk psychiatry per se as a discipline, although some have in the past, for example, the tenants of the antipsychiatry movement.8 For the purpose of this paper, I attempt more modestly to debunk the psychiatry that is at the service of the law, in the context of adjudicating over organ donation. In addition, I ask whether the courts really listen to the science of psychiatry. I theorize that what happens in courts seems more like a highly legalistic chopping-off, chewing-up and digestion of bits of psychiatric knowledge, than a genuine, idealistic and informed policy-making. But I wish to begin this section by asking: what was so psychiatric about the issue of intra-family body parts exchange, so that it is psychiatrists in particular that are called before the bench?

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A. Why Psy? The psychiatric evidence produced in the above cases is about the kindness, the vulnerability, and the natural or acquired psychological morality of incompetents, children and adults. From the discipline’s point of view, those who are too incompetent to decide are yet regarded as competent enough to experience pathological guilt with respect to others. In this context however, psychiatrists have admitted the highly speculative nature of psychiatric testimonies about the beneﬁt or detriment to donor children under twelve in the context of organ donation decision-making. (Baron et al. 1975) Competence itself is contested as a psychological category (Alderson, 1992; Price and Garwood-Gowers, 1995; Davis and Watson, 2000). Under this view, these testimonies would be too manufactured an evidence, especially when they assess psychological beneﬁts to a young child who has not yet developed the deep ties that the testimonies suggest. This seemingly contradictory and confused outline of psychiatrists’ view on the issue that I have examined reﬂects the reality depicted in the previous section. In light of such a state of confusion,9 why have the testimonies of professionals from the ﬁeld of psychiatry been privileged, over those of religious ﬁgures, of political philosophers, or of public health epidemiologists? I do not attempt to discover a single social or cultural explanation that caused psychiatry to take precedence over other disciplines as the favourite expertise in organ donation cases. Instead I am interested in mapping some of the – I believe, multiple, changing and probably contradictory – dispositions that shape this pedestal for psychiatrists. Let us ﬁrst imagine two alternate experts: say, a Marxist political philosopher, and an anthropologist. A Marxist political philosopher could have fared pretty well too, given the theme at stake – property, or at least possession and control, over one’s individual body parts. The Marxist expert’s testimony could have highlighted the need for a communitarian framework to the process of giving one’s organ to a family member in need. Under a common property view of living organs, the healthy sibling does not “own” his or her organs to begin with. Thus the private property aspect of the uses of living organs could have been turned into a ﬁction. Further, the Marxist could have debunked the individualist ideology underlying the discussion on what this individual subject would have decided, or what is in her best interest. An anthropologist could have provided the court with an account of comparative views of notions of property, self-ownership and other-ownership. More radically, she could have trashed the whole comparativist project altogether, as well as the category of ownership by turning it, for the judge, into an idiosyncratic artefact of Euro-American classiﬁcatory thinking. With respect to the idea of the body and its parts, the anthropologist could have questioned

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the way persons and things are constructed in whole-parts relations. (Strathern, 1992, 73) It is unclear how such testimonies could be popular among the American judiciary. This institution is legally and culturally bound to the legal precedent and ideology of autonomy and proprietary or quasi-proprietary control every person has with respect to her “own” and “whole” self and body. (Diprose, 1995) The Marxist political philosopher and the anthropologist are just two examples. Others, moralists and ethicists, historians, political theorists, sociologists, and social workers, all of whom address problems of human conduct, could have been brought to court by the parties. What is at issue in the case of organ donation by minors or incompetent adults is not a problem of brain disease, which belongs to neurology, but really a problem of living, and problems of living are what psychiatry, and other social sciences, are concerned with. As put by psychiatrist, libertarian, and supporter of the anti-psychiatry movement Thomas Szasz, while psychiatry’s assumptions are grounded in social and ethical norms, it seeks its solution in terms of medical frameworks (Szasz, 1989, 14). The difference between the “soft” sciences interested in the problems of living, and psychiatry, ﬁnds one of its sources in the latter’s association with the practice of medicine. For Szasz, it is through medicine that psychiatry acquired its power and prestige and thus, its appeal for parties, their advocates, and the courts. This association would be misleading, for psychiatry is but a social science grounded in the social and the ethical (Szasz, 1989, 23). A social class reading of the conﬁdence courts have in psychiatrists reinforces the idea that it is psychiatry’s links with medicine that make psychiatry particularly attractive for courts. As Sheldon reminds us, judges and medics share the same socio-economic strata and usually share a mutual respect for their jargon and expertise. (Sheldon, 1998, 21) The psychiatrist also carries with her, in the pocket of her white robe, the stigma of mental illnesses and of related fear and social panic about them. In the mouth of a psychiatrist, the words “grave emotional impact” do not conjure up the human relationships problems that are of interest to social sciences or ethics. They rather bring to mind fears of the remedies psychiatrists could offer or inﬂict to solve the “grave emotional impact”, that is, the spectres of medication and even conﬁnement. B. How Expert is the Expert? In Law, Liberty and Psychiatry, Szasz addresses the issue of psychiatrists’ expertise in the context of testamentary capacity assessment. At the outset, he notices that the problem of capacity to write and execute a valid will is not a problem that psychiatrists are likely to encounter in their daily practice. Further, he points out that:

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The only psychiatrists to show any interest in this problem have been those who serve interested parties as experts in determining capacity. Perhaps it is not unrelated to the real-life roles of these psychiatrists and how they deﬁned this alleged faculty. (Szasz, 1989, 72)

Szasz uses this example to show the institutional, as opposed to scientiﬁc, role of psychiatry in testamentary capacity evaluation. I will get back to this issue in a moment. But before that, I want to pay careful attention to Szasz’ theorization on the psychiatrists’ role in what he calls the “inheritance game.” I am not interested in testamentary capacity assessment as much as I am ﬁnding commonalities between this subject and the subject of incompetent giving organs, in terms of how the heart of their respective controversies end up becoming a problem for psychiatrists in the eyes of Szasz. Szasz looks at the social context in which the capacity of a testator is called into question. The context implies a legal battle, where the rules of the games are well established – rules about formalities of wills and rights of inheritance. In addition, in recognizing the right to make a will, the law aims at recognizing and mirroring the importance that society places on the “integrity of the self as a legal and psychosocial entity.” (Szasz, 1989, 74) The area of inheritance is a complex one, composed of the interest of society, of testators and of inheritors. Obviously there are conﬂicts among these interests. Yet, despite the clearly ethical character of the topic, psychiatrists are asked, and succeed, to reduce it to a psychiatric affair. One wonders whether anyone – among the inheritors, their advocates, the courts and the experts – is interested to learn about the mental state of the testators. The reason why a will is set aside, according to Szasz is ultimately because it injures community values and community notions of fairness and reasonableness (Szasz, 1989, 74–5). In his view, the contest is about who should inherit according to the social vision of the good. With respect to the testator, what matters is whether her conduct before death violates public decency – for example when a rich man disinherits his ill widow. The prevalent sense of what is right will be determinative, and if “common sense” is the scope of the inquiry, then no psychiatrist should be needed. This last assertion can be highly debated. Not being a jurist, Szasz is either naïve or a particularly radical critical legal scholar in the way that he assesses the law of testamentary capacity as being a matter of common sense and desert. For legal scholars acquainted with private law in general, and inheritance law in particular, the area of testaments may constitute the ultimate and iconic case for the application of individual consent (Baron, 1988, 1992; Rose, 1992). Yet, Carol Rose acknowledges that in the ﬁeld of wills, what underlies inquiries into the integrity of consent, aside from concern to respect the genuine psychological will of the deceased, is most interestingly, a fear of com-

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mitting a larceny towards the “proper” recipient. In characterizing who is a proper recipient (one who was promised something from, or who provided long devoted services to the deceased) and especially who is not (one who exercised undue inﬂuence on the deceased, or who did not do enough for the deceased) (Rose, 1992), not only do we slip from the realm of gift to the realm of exchange,10 we most importantly, are interested in the issue of consideration rather than in the issue of capacity to make a will. The above elaboration triggers a question for me as to whether, in a way which is similar to what they do in the testamentary capacity cases, the psychiatrists play a role in the all-social, all-ethical and all-legal “game” of providing an organ for an ill sibling. This is no conspiracy, but rather the product of dispositions such as a structural, yet implicit, faith that courts have in psychiatrists as experts to resolve issues, or rather conﬁrm the resolution otherwise achieved, in ethical and legal dilemmas. In the context of organ donation by incompetents, the determinative factors might be, for example, the social norm that one sibling has a duty towards another sibling, or the fact that parents know that they “do not have the choice,”11 and that they must do everything in their power to save the life of one child, including taking the risk of harming or using another child for that purpose. It might well be this evaluation and balancing of what is right that concerns the parties and the court, not the “psychological harm” done to the sibling who will feel guilty for not fulﬁlling her moral duty. There are other questions to examine while looking at psychiatrists as experts in this context. I wonder if in the epochs of Masden, Strunk and Hart, the occurrence of grief and guilt among incompetent individuals when they loose a family member, was an established and fertile ﬁeld of psychological and psychiatric investigation outside the courtrooms. If not, then I wonder: if an area is investigated by psychiatrists only in the context of service to parties to litigation, that is, if all the body of knowledge in the area in question has been constituted for purposes of assisting parties in legal battles, how expert is this knowledge? If in contrast, the ﬁeld is well researched both inside and outside the setting of litigation, I would ask: is the law equipped to evaluate a given theory by comparing ﬁndings presented in the context of a legal battle, with ﬁndings from other approaches within this same area of research? Can law perform this sort of internal scrutiny? As put by King and Piper, the psychological and psychiatric experts who research legal issues, and who regularly provide expert evidence in courts, may represent “Psychology” or “Psychiatry” in the eyes of the law, but “their construction of child psychology may not in any way be representative of the range of theoretical and experimental work across the child welfare . . . ﬁelds” (King and Piper, 1995, 58). The law’s re-worked edition of psychology or psychiatry is thus inevitably partial, selective, and unrepresentative. Of course, courts’ uses of expertise present

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problems in many areas of law, and is not unique to the “psy” sciences. In fact, on can ask more generally: how distinct is science from advocacy when speaking about expert testimony? It is important candidly to concede that in trial procedure, the psychiatrist’s partisanship can never really be separated from her will to achieve a full and genuine comprehension of the parties as human beings. (Carvers, 1965; Diamond and Louisell, 1965) As noticed by Jasanoff, critiques of law and science most often focus on how hard it is for judges and juries to identify good science and legitimate expertise. Both these concepts “are presumed to exist unproblematically in a world that is independent of the day-to-day workings of the law.” (Jasanoff, 1997, xiii) This understanding further presumes scientists’ capacities to settle factual disputes, and to distinguish the true from the false without external – social and legal – inﬂuences. Yet, the scientiﬁc purity of the so-called “disinterestedness” remains vulnerable. It is suggested by King and Piper that experts may feel they have purposefully to modulate and even exaggerate their ﬁndings to make sure that they convey their views in a manner recognizable to the judge. (King and Piper, 1995, 55) Despite the adversarial setting and structure of litigation, and the process of presentation and deconstruction of scientiﬁc experts’ claims in courtrooms, courts ultimately manage to achieve closure about the truthfulness or untruthfulness of the claims presented. (Fuchs and Ward, 1994; Jasanoff, 1997) This is possible mainly due to the use of rules of evidence. The law distinguishes itself sharply from scientiﬁc investigations, psychiatric or otherwise. The law attempts to close debates, obviate uncertainties, and provide a “truth effect” (Valverde, 2003a, 7) in the form of a just result, with a winner and a loser. In contrast, sciences are regarded as continuous, open-ended quests for truth. The latter depiction of the law-psychiatry interaction – partially inspired by the self-referential view of the law – fairly represents what happens in the law of intra-family organ donation examined so far. For example, in the cases discussed in this paper, the psychiatrists do not entirely reshape the problem at hand. We could say that they did so if, for example, in Strunk, they had given testimony about the psychological effects on parents to detriment one child in the beneﬁt of another; if in Hart they had testiﬁed on the psychological nature of making life or death decision in a health care setting, or on the psychological trauma for all individual members of a family to ﬁnd themselves debating health care matters in the impersonal setting of a courtroom. These are all potential exciting ﬁelds of research for specialists in the ﬁeld that could theoretically be relevant to the issue of organ donation by children and incompetent adults. But the psychiatrists called to testify in court are called to testify solely on the very speciﬁc legal question at stake. This is often termed as the issue of “ﬁt” or relevance in evidence law (see Daubert). An expanded concept of “best interest” could broaden the range of knowledge to be used in these

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cases, but this expansion would remain dependent on law’s self-referential thinking on evidence requirements.

6. Conclusion: Self-referential Law’s Missed Opportunity I concede that it is difﬁcult to imagine a radically new idea of “relevance” in evidence law, given the law’s narrow and efﬁcient conceptualisation of reality. Generally, the law as it is taught today in law schools narrows signiﬁcantly the range of topics lawyers will allow themselves to discuss in their career. (Redding, 1998, 116) What the law is interested in is small bits of extra-legal thinking, only to ﬂesh out its own self-referential thinking about the best interest of the person whose organs and tissues are wanted. Given that the law’s own “precedents” state that interventions on the physical body should only occur after informed consent is secured, the law, faced with an instrumental non-consensual coerced intervention on the physical body, is looking for a counterbalancing alternate factor to justify this dissonance, within the boundaries of its legal thinking. This is how it becomes willing to use psychologists and psychiatrists expertise: within the conﬁnes of what is legally relevant, but not about the boundaries of relevance. Even when the use of psychological evidence would be relevant, that is, would have ﬁtted within law’s narrow conceptualisation or thinking frame of a “legal” problem, courts tend not to catch the opportunity of access to extralegal knowledge in order to radically modify their legal standards. A good example is the effect the lack of impact psychological research has had on the notion of competence to consent. The determination of the competence of children and people with mental illness to provide valid consent in health care contexts is a ﬁeld where there exist research ﬁndings that could have a real transformative impact on law and policy. (Melton, Koocher, and Saks, 1983; Winick, 1996) For example, social science research in the area of mental health – namely, the MacArthur Treatment Competence Study (MacSAC) – has taught us that mental illness cannot be equated with incompetence to engage in treatment decision-making (Winick, 1996; and see Poythress et al., 2002). In thinking critically about this particular social science project, not only do I note that science gets into law, I see even better how law gets into science. The “legally built-in” character of scientiﬁc projects themselves has been documented elsewhere (Silbey and Ewick, 2003). In other words, I observe that, from a legal perspective, the law sometimes seems to be “built-into” science, precisely in science’s agenda. Hence, legal scholars will see, and glean from science, precisely the parts of science that comprise legal projects. Or else: they will view science as a legal project. To take an example, I ﬁnd fascinating that

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the MacSAC scientiﬁc project was praised – by a legal commentator – exactly for its “effect of more perfectly realizing the objectives of the informed consent doctrine” (Winick, 1996, 166). The legal commentator arguably “misunderstands” the scientiﬁc project: he thinks it is a legal project. As put by American legal scholar Pierre Schlag, it appears that the law prefers to comfort itself with its own “internal perspective,” and to reject new thoughts or critical concepts that are located outside of the law’s doctrines and principles. Groundbreaking ﬁndings on the competence to decide of those legally deemed incompetent are such “outsiders.” In addition, Schlag detects in the law features that are quite similar to those highlighted in Teubner’s ideas, when he ﬁnds that, “[t] here is a recurrent sameness to American legal thought . . . from saying over and over again what the law is and saying it, of course, in a way that conforms with the law itself.” (Schlag, 1995, 1111). An interest in how legal texts are built is what has driven this paper. The point was to analyse how, if at all, the use of mainly psychiatrists but also other specialists, has contributed to the normalization of organ transplants involving children and incompetent adults. I believe it has. It did it in a limited and convoluted manner, that is, the same way the juggling of grand bioethical frameworks and legal reasoning did too. As this paper tried to convey, I believe less in the overall function and power of the legal – and in my case, bioethical principles – as causal explanations for shifts in policy, than in fragmented, broken down, dynamic and even contradictory expert, legal, and lay “commonsensical” features.

Acknowledgements I thank Mary Donnelly, Dermot Feenan, Martha Fineman, Tsachi Keren-Paz, Oonagh Reitman, Annelise Riles, Leslie Sebba, Laura Spitz and the participants in the faculty seminar at the Faculty of Law of the Queen’s University Belfast, January 2004, and in the American Law and Society Meeting in Chicago, May 2004, for their comments. I thank the Gender, Sexuality and the Family Program at Cornell Law School, the Lady Davis Doctorate Fellowship Trust, and the Faculty of Law of the Hebrew University of Jerusalem for their support.

Notes 1 I borrow the expressions “openness or closure” from system theorist Niklas Luhman (1988). 2 The theory that law is a comprehensive epistemic system that thinks in an autonomous

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and self-referential manner, is explained at length by Gunther Teubner (1993; 1996). For the purpose of this paper though, I am interested solely in a few components of his concept of self-referentiality, in order to underline the limits of law’s potential to transform itself. 3 Other metaphors are available to analyse the choice of rubrics: an assault is an attack on the outside, or to the skin, surface, or envelop of a body. The transfusion of blood implies getting inside a body, as one would enter into a land: this is trespass. Historically, the tort of assault was developed from trespass. Trespass is the broadest category; it refers to old English writ related to any crossing without permission (either land, or physical body). Assault, on its part, is an actual or a threat of touching of the body boundaries. (See Henderson et al., 2003). 4 Reminiscent of these moral hyperboles on dignity is the dissenting opinion of Justice Mosk in the famous Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990) the case on property rights in the body, informed consent and conversion (see Rabinow, 1996, 144–5). 5 I use Mother with a capital M to distinguish the realities of motherhood/mothering, from the symbol of the unconditionally loving Mother, as Martha Fineman does (Fineman 1995, 70). 6 Strunk had mentioned the substituted judgement criterion but was decided on the basis of what is in the best interests of the ward. 7 An analogy with a current event outside the U.S. can be useful to convey what I mean here. Recently, the Israeli newspaper Ma’ariv reported the following story: an adult woman had generously agreed to give a kidney to an ill woman to whom she was unrelated. After the ill woman had considerably lowered her immune system with immunosuppressive drugs and radiation in preparation for the donation, the donor decided not to give her kidney, after obtaining more information and consulting with her family. The ill woman died. The tragedy understandably triggered considerable public stir. The withdrawal of the potential donor did not only prevent a positive increase in the donee’s health, but had made her worse-off. The media portrayed the woman who took back her offer to donate as guilty of the ill woman’s death. Not to donate did become some sort of homicide, or “license to kill.” (Even, 2004, 14). 8 Anti-psychiatry is a “political movement” that emerged concurrently with the turmoil of civil rights movements in the United States of America in the 1960s. It grew signiﬁcantly in the 1980s and 1990s, accompanied by increased philosophical scrutiny and disability studies activism critiquing abusive medical practices. 9 I know that what I call here confusion can be interpreted in the scientiﬁc milieu as productive; a signal that this ﬁeld of knowledge is healthy. 10 I must clarify that when I write that the discourse slips from the realm of gift to that of exchange, I do not mean that those two were in fact distinct to begin with. There are “no free gifts”, says Mary Douglas in her preface of Marcel Mauss’ Essai sur le don (Mauss, 1990, vii). Derrida goes further in claiming that since all gifts are essentially embedded in a system of paybacks of some kind – even personal satisfaction is a beneﬁt to be reaped – the conception that there can be such a thing as a gift is madness (Derrida, 1992, 10–13). Nevertheless, legal thinking has traditionally regarded them as two separate legal categories. 11 In their survey of parents who use IVF and preimplantation genetic diagnosis in order to create a “saviour sibling,” that is, a child born to be a donor, Sarah Franklin and Celia Roberts report that parents express that they are neither choosing, nor selecting anything or anyone, but rather that they act because they are “constrained by limits,” and that “they do not have the choice” (Franklin and Roberts, 2003, 4).

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References Agamben, G. (1995) Homo Sacer. Sovereign Power and Bare Life (trans. Daniel HellerRoazen), Stanford, Stanford University Press. Alderson, P. (1992) ‘In the Genes or in the Stars? Children’s Competence to Consent’, Journal of Medical Ethics 18(3) pp. 119–124. Baron, C.H., Botsford, M. and Cole, G.F. (1975) ‘Live Organ and Tissue Transplants From Minor Donors in Massachusetts’, Boston University Law Review 55 pp. 159–193. Baron, J.B. (1988) ‘Gifts, Bargains and Form’, Indiana Law Journal 64 pp. 155–203. ——— (1992) ‘Do We Believe in Generosity? Reﬂections on the Relationship Between Gifts and Exchanges’, Florida Law Review 44 pp. 355–363. Cahn, E. (1955) ‘Jurisprudence’, New York University Law Review 30 pp. 150–167. Castel, J.-G. (1968) ‘Some Legal Aspects of Organ Transplantation in Canada’, Canadian Bar Review 46 pp. 345– 405. Cohen, F. (1935) ‘Transcendental Nonsense and the Functional Approach’, Columbia Law Review 35 pp. 809–849. Cronan, C.C. (1969–70) ‘Spare Parts from Incompetents: a Problem of Consent’, Journal of Family Law 9 pp. 309–316. Culler, J. (1982) On Deconstruction. Theory and Criticism After Structuralism, Ithaca, Cornell University Press. Curran, W.J. (1951) ‘A Problem of Consent: Kidney Transplantation in Minors’, New York University Law Review 34 pp. 891– 898. Daube, D. (1966) ‘Transplantations: Acceptability of Procedures and Required Legal Sanctions’ in Wolstenholme, G.E.W. and O’Connor, M. (eds.) Ethics in Medical Progress: With Special Reference to Transplantation, Boston, Little, Brown. Davis, J. and Watson, N. (2000) ‘Disabled Children’s Rights in Everyday Life: Problematising Notions of Competency and Promoting Self-Empowerment’, International Journal of Children’s Rights 8 pp. 211–228. Delgado R. and McAllen, P. (1982) ‘The Moralist as Expert Witness’, Boston University Law Review 62 pp. 869–926. Deneen, P.J. (2003) ‘Invisible Foundations: Science, Democracy, and Faith among the Pragmatists’, Political and Legal Anthropology Review 26(2) pp. 8–37. Derrida, J. (1992) Given Time, (trans. Peggy Kamuf ) Chicago, University of Chicago Press. Diprose, R. (1995) ‘The Body Biomedical Ethics Forgets’ in: Komesaroff, P.A. (ed.) Troubled Bodies. Critical Perspectives on Postmodernism, Medical Ethics, and the Body, Durham: Duke University Press. Diamond, B.L. and Louisell, D.W. (1965) ‘The Psychiatrist as An Expert Witness: Some Ruminations and Speculations’, Michigan Law Review 63 pp. 1335–1354. Elliott, C. (1998) ‘Patients Doubtfully Capable or Incapable of Consent’ in: Kuhse, H. and Singer, P. (eds.) A Companion to Bioethics, Oxford, Blackwell. Even, D. ‘Tarma Le’mota’ (“Gift of Death”) Ma’ariv 30 January 2004, p. 14. Ferrarese, M.R. (1997) ‘An Entrepreneurial Conception of the Law? The American Model through Italian Eyes’ in Nelken, D. (ed.) Comparing Legal Cultures, Aldershot, Dartmouth. Fineman, M.A. (1990) The Illusion of Equality, The Rhetoric and Reality of Divorce Reform, Chicago, University of Chicago Press. ——— (1995) The Neutered Mother, the Sexual Family and Other Twentieth Century Tragedies, New York, Routledge.

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Fischer, F. (1990) Technocracy and the Politics of Expertise, Newbury Park, Calif., Sage. Frank, J. (1963) Law and the Modern Mind, Garden City, N.Y., Anchor. Franklin, S. and Lock, M. (2003) ‘Animation and Cessation: The Remaking of Life and Death’ in Franklin, S. and Lock, M. (eds.) Remaking Life and Death. Towards an Anthropology of the Biosciences, Santa Fe, School of American Research Press. Franklin, S., Roberts, C., Braude, P. and Rutherford, A. (2003) ‘Deﬁnitions of Genetic Knowledge in the Context of Preimplantation Genetic Diagnosis: An ethnographic study,’ Summary End of Award Report, ESRC Award Reference Number L218252036. Fuchs, S. and Ward, S. ‘What is Deconstruction, and Where and When Does it Take Place? Making Facts in Science, Building Cases in Law’, American Sociological Review 59 pp. 481–500. Gieryn, T.F. (1983) ‘Boundary-work and the Demarcation of Science from Non-science: Strains and Interests in Professional Ideologies of Scientists’, American Sociological Review 48 pp. 781–795. Heller, T.C. (1985) ‘Legal Discourse in the Positive State: a Post-Structuralist Account’ in Teubner, G. (ed.) Dilemmas of Law in the Welfare State, Berlin, Walter de Gruyter. Henderson, J.A., Pearson, R.N. and Siliciano, J.A. (2003) The Torts Process, 6th ed., Gaithersburg MD, Aspen Publishers. Imwinkelried, E.J. (2003) ‘Expert Testimony by Ethicists: What Should be the Norm?’, Temple Law Review 76 91–128. Jasanoff, S. (1995) Science at the Bar: Law, Science and Technology in America, Cambridge, Harvard University Press. Kahn, P. (1999) The Cultural Study of Law. Reconstructing Legal Scholarship, Chicago, University of Chicago Press. Kennedy, D. (1997) A Critique of Adjudication (ﬁn de siècle), Cambridge, Harvard University Press. King, M. and Piper, C. (1995) How the Law Thinks about Children, Aldershot, Arena. Koury, R.A. (1970) ‘Equity- Transplants- Power of Court to Authorise Removal of Kidney from Mental Incompetent for Transplantation into Brother’, Wayne Law Review 16 1460–1475. Latour, B. (2002) La fabrique du droit. Une ethnographie du Conseil d’État, Paris, La découverte. Lewis, P. (2002) ‘Procedures that are Against the Medical Interests of Incompetent Adults’, Oxford Journal of Legal Studies 22 575–618. Lock, M. (2002) Twice Dead. Organ Transplants and the Reinvention of Death, Berkeley, University of California Press. Luhmann, N. (1988) ‘Closure and Openness: On Reality in the World of Law’ in: Teubner, G. (ed.) Autopoietic Law: A New Approach to Law and Society, Berlin, Walter de Gruyter. Mauss, M. (1990) The Gift. The Form and Reason for Exchange in Archaic Societies, London, Routledge. Mnookin, J.L. (2001) ‘Fingerprint Evidence in an Age of DNA Proﬁling’, Brooklyn Law Review 67 pp. 13–70. Nader, L. (1968) ‘The Anthropological Study of Law’ in Simon, R.J. (ed.) The Sociology of Law. Interdisciplinary Readings, San Francisco, Chandler Pu. Co. Nelken, D. (2001) ‘Social Sciences in the Law: Theoretical Issues and Methodological Problems: Can Law Learn from Social Sciences?’, Israel Law Review 35 pp. 205–224.

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Nerlich, B., Johnson, S., and Clarke, D.D. (2003) ‘The First ‘Designer Baby’: The Roles of Narratives, Clichés, and Metaphors in the Year 2000 Media Debate’ Science as Culture 12:4 pp. 471–498. Nowlin, C. (2003) Judging Obscenity. A Critical History of Expert Evidence, Montreal – Ithaca, McGill-Queen’s University Press. Pound, R. (1968) ‘The Need of Sociological Jurisprudence’ in Simon, R.J. (ed.) The Sociology of Law. Interdisciplinary Readings, San Francisco, Chandler Pu. Co. Poythress, N.G. et al. (2002) Adjudicative Competence. The MacArthur Studies, New York, Kluwer Academic/Plenum Publishers. Price, D. and Garwood-Gowers, A. (1995) ‘Minors: Are Children Other People’s Medicine?’, Contemporary Issues in Law pp. 1–27. Rabinow, P. (1996) Essays in the Anthropology of Reason, Princeton, Princeton University Press. Redding, R.E. (1998) ‘Special Collection: Psychology and the Law: How Common-Sense Psychology Can Inform Law and Psycholegal Research’ University of Chicago Law School Roundtable 5 pp. 107–142. Riles, A. (2004) ‘Taking on Technology: A New Agenda for the Cultural Study of Law’ Robertson, J. (1976) ‘Incompetent Organ Donors and the Substituted Judgment Doctrine’, Columbia Law Review 76 pp. 48–78. Rose, C.M. (1992) ‘Giving, Trading, Thieving, and Trusting: How and Why Gifts Become Exchange and (More Importantly) Vice Versa’, Florida Law Review 44 pp. 295–317. Rosen, P.L. (1972) The Supreme Court and Social Science, Urbana, University of Illinois Press. Savage, J.C. (1969–70) ‘Organ Transplantation With An Incompetent Donor: Kentucky Resolves the Dilemma of Strunk v. Strunk’, Kentucky Law Journal 58 pp. 129–160. Schlag, P. (1995) ‘Law and the Postmodern Mind: Anti-Intellectualism’ Cardozo Law Review 16 pp. 1111–1120. Scott, R. (1981) The Body as Property, New York, Viking Press. Shartle, B. (2000) ‘Proposed Legislation for Safely Regulating the Increasing Number of Living Organ Donation and Tissue by Minors’, Lousiana Law Review 61 pp. 433– 471. Sheldon, S. (1998) ‘A Responsible Body of Medical Men Skilled in That Particular Art . . .’: Rethinking the Bolam Test’ in Sheldon S. and Thomson, M.(eds.) Feminist Perspectives on Healthcare Law, London, Cavendish. Simmons, R.G., Simmons, R.L. and Klein, S.D. (1977) Gift of Life: The Social and Psychological Impact of Organ Transplantation, New York, Wiley. Silbey, S.S. and Ewick, P. (2003) ‘The Architecture of Authority: The Place of Law in the Space of Science’ in: Sarat, A., Douglas, L. and Umphrey, M. (eds.) The Place of Law, Ann Arbor, University of Michigan Press. Strathern, M. (1988) The Gender of the Gift. Problems with Women and Problems with Society in Melanesia, Berkeley, University of California Press. ——— (1992) After Nature: English Kinship in the Late Twentieth Century, London, Cambridge. Szasz, T. (1989 (1963)) Law, Liberty, and Psychiatry. An Inquiry into the Social uses of Mental Health Practices, Syracuse, Syracuse University Press. Teubner, G. (1993) Law as an Autopoietic System, Oxford, Blackwell. ——— (1996) Droit et réﬂexivité. L’auto-référence en droit et dans l’organisation, ParisBruxelles, L.G.D.J. Bruylant.

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Thomson, C. (2001) ‘Strategic Naturalizing: Kinship in an Infertility Clinic’ in Franklin, S. and MacKinnon, S., eds., Relative Values: Reconﬁguring Kinship Studies, Durham, N.C., Duke University Press. Valverde, M. (2003a) The Law’s Dream of a Common Knowledge, Princeton, Princeton University Press. ——— (2003b) ‘Pragmatist and Non-pragmatist Knowledge Practices in American Law’, Political and Legal Anthropology Review 26(2) pp. 86–108. Winick, B.J. (1996) ‘The MacArthur Treatment Competence Study: Legal and Therapeutic Implications’, Psychology Public Policy and Law 2 pp. 137–166.

Cases Buck v. Bell 274 U.S. 200 (1927) Bonner v. Moran 126 F. 2d 121 (1941) Camitta v. Schillinger, Equity No. 74–18 (Mass.Sup.Jud.Ct.Jan. 31, 1974) Columbia v. White, 442 A.2d 159 (D.C. 1982) Curran v. Bosze 566 N.E.2d 1319 (Ill. 1990) Daubert v. Merrell Dow Pharmaceuticals, Inc., 509 U.S. 579 (1993) Hart v. Brown 289 A.2d 386 (1972 Conn.) Holden v. Hardy (1969 US) 366 (1898) In re Guardianship of Pescinski 67 Wis. 2d 4 (Wis. 1975) In Re Richardson 284 So. 2d 185 (1973 La.App.) Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990) Muller v. Oregon 208 U.S. 412 (1908) Rishworth v. Moss et al., 191 S.W. 843 (Tex.Civ. App.) Schloendorff v. Society of New York Hospital 211 N.Y. 125 Strunk v. Strunk 445 S.W. 2d 145 (Ky 1969) Zaman v. Schultz 19 Pa. D. & C. 309 (C.P. 1933)

Minors and Euthanasia DEBBIE MANNAERTS Junior Researcher, Ghent University, Department of Philosophy and Moral Science

FREDDY MORTIER Professor of Ethics, Ghent University, Department of Philosophy and Moral Science

Introduction: the issue In Belgium, one of two countries in the world that legally allows euthanasia under speciﬁed conditions, a public debate is taking place over whether or not the 2002 euthanasia law should be amended to include competent minors,1 who are currently excluded from the scope of the law. A proposal to that effect has been submitted to the Senate (Leduc Wille, Law Proposal 3–804/1 of July 7, 2004), and is being discussed in the media.

Legislating euthanasia As we will use the term here, “euthanasia” denotes the deliberate ending, by a third party, of a patient’s life upon his or her explicit request, by the administering of lethal substances. The elements essential to euthanasia are thus: intentional ending of the patient’s life, explicit request by the patient to have done so, the use of lethal drugs and administration of these drugs by a third party, commonly a physician (or a nurse). Euthanasia laws In Belgium and the Netherlands, a law has been enacted (in Belgium in 2002, in the Netherlands in 2001)2 which states that, in some cases, physicians who perform euthanasia will not be prosecuted, because when certain requirements are met and strictly followed, the act is not considered a crime. The essence of the euthanasia laws, both in Belgium and the Netherlands, is that a request for life termination be well-informed, repeated (well-considered) and voluntary. Furthermore, it must be formulated by a patient suffering intolerably from a medically irreversible condition, such as a disease Michael Freeman (Ed.), Children’s Health and Children’s Rights, 255–277. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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or accident, as explicitly stated in Belgian law. If the request conforms to these requirements, the physician is permitted, though not obliged, to comply with the euthanasia request. In addition to these substantial requirements of prudent practice, procedural requirements should be met. For instance, the physician must obtain a written request, consult other physicians, keep a medical record of the case, and so on. The euthanasia laws in both Belgium and the Netherlands are quite similar (Deliens and Van der Wal, 2003); however, a striking difference pertains to the qualifying age-population to which allowable euthanasia requests are applicable. In the Netherlands, minors from the age of 12 onwards can legally request euthanasia, but only when they are 16 and older can they do this without parental agreement. For minors aged 12 to 15, physicians are allowed to comply with the request for euthanasia, but only if the parents agree. Minors who are 16 and older can autonomously request euthanasia, which means that, although parents must be involved in the decision-making process, their permission is not required.3 Adults can choose whether or not they would like any involvement of family-members. In contrast, the Belgian ‘Law concerning euthanasia’ explicitly excludes minors altogether: euthanasia for persons under 18 years of age, even when all legal requirements regarding the quality of the request for euthanasia are met, is prohibited and considered to be a crime. The scope of the issue While Flanders and the Netherlands together account for several hundred end-of-life decisions regarding minors yearly, in only a very small number of these cases is euthanasia performed, for in the vast majority of instances, one or more of the elements essential to euthanasia is lacking (Van der Heide et al., 2003). The life ending may not be intentional, but merely accepted as a potential or even certain side effect of combating pain and symptoms, such as by using opioids (double-effect decisions). Occasionally, drugs are deliberately used to end the child’s life without his or her explicit request, either because it is impossible to ask the child’s opinion (e.g. in neonates), because the request would be insufﬁciently informed (e.g. in young children) or because it is believed that the minor should not be burdened with considering and formulating a death request (no-request decisions). Drugs need not be involved at all; rather, the physician may decide to discontinue a current treatment or opt not to initiate a new one (non-treatment decisions). Although double-effect, no-request and non-treatment decisions constitute the vast majority of end-of-life decisions, we will focus here only on the deliberate ending of a minor patient’s life upon his or her explicit request, by the administering of lethal substances. For the Netherlands, data from Van der Wal et al. (2003) cites approximately 5 cases of euthanasia in the category of 1 to

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16 year-olds in 2001. For Belgium, the president of the Federal Commission for the Evaluation and Control of Euthanasia estimates the number of euthanasia cases involving minors at 5 to 10 cases yearly.4 Admittedly, the number of minor patients who would ﬁnd themselves in a position to request euthanasia and would indeed do so is quite small, to the extent that one might question the need to legislate clearly on the matter. The issue of unjustiﬁable age-discrimination must nevertheless be addressed, and furthermore, it is undesirable to condemn physicians to committing illegal acts, when a legal arrangement (in Belgium) extending the current euthanasia law is feasible. The National Disciplinary Board of Physicians has also contested this exception regime for euthanasia.5 We will argue that where euthanasia is legally allowable for adults, should a minor competently and validly request euthanasia, it would be a discriminatory act to deem this request unacceptable on the basis of age alone. The acceptance of euthanasia for adults is taken for granted.6 The Netherlands vs. Belgium So, in Belgium, minors are excluded from the scope of the law. Thus, they are considered legally incompetent, even when functionally competent, to request euthanasia.7 Additionally, since only the patient can legally request euthanasia and no third party can authorize this, it is absolutely prohibited for minors, even when all requirements are met. A comparison of the laws in the Netherlands and Belgium reveals that, from a legal perspective, the countries took markedly different paths regarding minors. In the Netherlands, the existing rules regarding minors and medical decision-making apply equally for euthanasia requests; the law regulating euthanasia is in accord with general medical law and with legal doctrine regarding the position of minors. In Belgium, however, the age of legal majority for requesting euthanasia was put forward. Legal doctrine and medical law (e.g. the Belgian law on patient’s rights and the mature minor-doctrine) do not apply here – euthanasia is considered to be an exception. In previous parliamentary debate in Belgium, the position regarding euthanasia and minors was not thoroughly addressed, and ultimately the issue was set aside until further notice. In the following text, we will more closely examine the reasons for the sanctioning of this exception regime by exploring some of the issues commonly raised in the debate over minors and euthanasia: that they are not capable or mature enough to make such a decision, and that they should not be burdened with this (kind of ) decision. Further, we will discuss the role of parents and other considerations relevant to this discussion.

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The argument from incompetence The argument from incompetence is considered in detail in this paper, since, in our opinion, it is the most powerful argument utilized to exclude minors, and conversely, to include minors when the argument of incompetence is countered. In current legislation regarding euthanasia in both Belgium and the Netherlands, the request of the (adult) patient is a necessary requirement. This request is considered meaningful only from a functionally competent person, i.e. a person who has the requisite capacities to make the decision at hand. The underlying moral rationale for allowing personal choice is the principle of respect for persons and their moral worth, acknowledging their capacity for self-determination (Glass, 1997). The right to self-determination is only meaningful, however, if the person is appropriately informed (provided with sufﬁcient information to be enabled to make the decision), is acting voluntarily (not under pressure or duress) and has the ‘capacity’ to make that particular decision. Concerning euthanasia and minors, the question then arises whether they are capable of making such a difﬁcult decision, that of which the consequences are ﬁnal. It is often questioned whether or not they can make serious decisions pertaining to life and death, and as regards euthanasia, the claim that this is ‘a special kind’ of decision, which requires us to be even more careful and necessitates additional protective measures, frequently arises. In the subsequent sections, we will delve into these issues. First we will point out the increased recognition of older minors’ competency to decide on health care matters, then we shall focus more speciﬁcally on end-of-life decisions, and ﬁnally we will discuss special problems relating to euthanasia requests. Minors and medical decision-making By and large, the question of competency lies at the centre of the debate over self-determination rights for minors. Children and adolescents are often prevented from deciding on many issues affecting their lives. Minors are considered to be a vulnerable population and are generally presumed to be legally incompetent to exercise their rights autonomously. The major assumption underlying such exclusion is the notion that they are much less competent than adults in making decisions.8 Thus, parents and physicians traditionally have made all treatment decisions on behalf of children, although some exceptions, in which minors can provide informed consent themselves, are frequently granted: in speciﬁc medical conditions,9 in certain emergency situations10 or in dealing with an emancipated minor11 (Zinner, 1995; Kuther, 2003). The rationale behind such exceptions is

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not necessarily based on an assumption or recognition of the minor’s competence to decide, but rather it is primarily intended to secure access to and the delivery of care. For instance, minors are permitted to seek emergency care and to obtain certain services when requiring parental notiﬁcation and/or consent would likely discourage many minors from seeking treatment important to their own and others’ welfare. Just as the concept of informed choice has developed over the last 30 years, consideration of children’s roles in decision-making has also evolved (Harrison et al., 1997). Nowadays, it is commonly thought that children and adolescents should be appropriately involved in decisions affecting them, and that once they have sufﬁcient decision-making capacity, they should become the principal decision-maker for themselves. This is also reﬂected in article 12 § 2 of the Belgian Law on Patient’s Rights (22nd August 2002), which states that the minor patient, of sufﬁcient age and level of development, should be involved in exercising his or her rights. If the minor patient is capable of exercising these rights, then he or she can do so without mediation or intervention by parents or guardians. Thus, a child may consent to or refuse treatment without parental consent if he or she is judged sufﬁciently competent to make the medical decision. In determination of legal competence, two standards are commonly applied: the presumptive and the evidential (Elliston, 1996). The presumptive standard states that, provided that the child has reached a speciﬁed age, he or she is presumed competent. Age is the variable most often used as a reference point in making determinations about the ‘appropriate’ distribution of commodities such as rights and freedoms (Koocher and DeMaso, 1990). In effect, functional competence is presumed present upon reaching a certain age,12 and on this presumption, one is granted legal competence, i.e. decisional authority within a particular domain. This presumption of competence can, as with adults, always be rebutted. Nevertheless, even though a minor may not yet have arrived at the age of presumed competence, this minor may possess relevant capacities or abilities that constitute functional competence. Most experts distinguish between legal competence and functional competence in paediatric patients (Van der Feen and Jellinek, 1998). Thus, an evidential standard regarding medical decisionmaking and minors is often applied, commonly referred to as ‘the mature minor rule’13 or the ‘Gillick competent child’.14 This standard requires that children, those under the age to be presumed competent, demonstrate to the satisfaction of a medical practitioner (or judge) their attainment of the requisite degree of functional competence to decide on the issue in question. This standard acknowledges that, on account of the variability in decision-making capacity from one situation to another, one time to another, and one child to another,

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each child must be individually evaluated. What is in question, just as with adults, is their capacity, with the help of family, physicians and other members of the health care team, to understand the nature and consequences of alternative treatments sufﬁciently to be able to give or withhold informed consent to a recommended treatment alternative (Buchanan and Brock, 1990). Let us examine this evidential standard a bit more closely. Which capacities are required, what relevant variables are involved and what does empirical research tell us? The required functional criteria for decision-making include the abilities to understand (to comprehend essential medical information), to appreciate the nature of the decision (to recognize the gravity, immediacy, and permanence of the choice), to reason (to consider multiple factors in predicting future consequences) and to choose voluntarily (in relation to authority ﬁgures such as parents and physicians). Also mentioned is having or applying a set of values to aid in choosing from various options, or put another way, having a set of values as a stable conception of one’s good such that appropriate weight is assigned to future consequences of present decisions (King and Cross, 1989; Leikin, 1989; Buchanan and Brock, 1990; Glass, 1997). Additionally, possession of an adequate conceptualisation of death is essential for understanding, appreciating and reasoning about certain (especially end-oflife) decisions (Leikin, 1989). By referring to these criteria for decision-making capacity, a decisional role may be assigned to the child commensurate with his or her level of functional competence (Freyer, 1992). In other words, there is no speciﬁc age at which a child becomes competent to make health care decisions; it depends both on the individual child and on the seriousness and complexity of the decision at hand. It should be noted that competence is task-speciﬁc and depends heavily on the context in which the decision is to be made (Glass, 1997; De Lourdes et al., 2003). Competence is not a simple attribute that a child either does or does not possess, and consent itself does not occur in a vacuum. Much depends on the relationship and trust established between the child, family and health care professionals. Moreover, it relates to the child’s capacity for utilizing information, the quality and quantity of the presented information, the form of presentation and the source of the information. Evidencing an evidential standard With regards to the general population of minors, recent research into the development of cognitive capacities indicates that adolescents beyond the age of 14 do not differ signiﬁcantly from adults in their decision-making competence across a variety of domains, while young people under this age show

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more variable performance (Grisso and Vierling, 1978; Weithorn and Campbell, 1982; Lewis, 1983; Leikin, 1989; Buchanan and Brock, 1990; Ambuel and Rappaport, 1992; Scott et al., 1995). Buchanan and Brock stated in 1990 that, as a very broad generalisation, the developmental evidence supports the conclusion that children by age 14 or 15 usually have developed the various capacities necessary for competence in health care decision-making to a level roughly comparable to that attained by most adults. More speciﬁcally, on the competency of young people aged 13 or older to decide on matters of life and death, a review article of research results concluded: “An expanding body of literature indicates that adolescents, with some exceptions, are capable of making major health decisions and giving informed consent, whether in a clinical or in a research setting” (Weir and Peters, 1997, p. 31). According to Freyer (2004), a broad consensus comprised of paediatric health professionals, developmental psychologists, ethicists and lawyers has emerged, which holds that adolescents of approximately 14 years of age should be presumed, unless demonstrated otherwise, to have the functional competence to make binding medical decisions for themselves, including decisions relating to the discontinuance of life-sustaining therapy and other end-of-life issues. Furthermore, competence is not dictated by chronological age (Hill and Tisdall 1997; Alderson 2000). Children vary in their rate of development and are also inﬂuenced by their environment, which affects their cognitive, affective, social, moral, and physical growth. Competence is associated with cognitive capacity, rationality, and age, but it is now also held to be a function of a child’s experience of the illness in question, unique experience on which to base decisions about future treatment (Crisp et al., 1996; Lowden, 2002). Minor patients who have gone through repeated treatment and hospitalisations and who have experienced years of physical and psychological suffering, are frequently mature beyond their years. However, experiencing a life-threatening illness may result in depression, anger, or pain, causing a child to regress or to become mature beyond his or her years: each child responds and copes in a different way (Van der Feen and Jellinek, 1998, p. 141). According to Freyer (discussing paediatric cancer patients): “. . . pediatric patients as young as age 7 or 8 years may possess important speciﬁc knowledge and general maturity not belonging to age-matched children lacking their medical experience” (Freyer, 1992, p. 139). Their understanding does not consist of abstract thought but instead of illness, disability and treatment experience: the suffering that characterizes their lives, the features of life that make it worth continuing, the beneﬁts and burdens that accompany medical treatment and, for some, the prospect of death (Alderson and Montgomery, 1996a;

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Weir and Peters, 1997; Beidler and Dickey, 2001). Even the critical developmental step of acquiring a workable (and accurate) concept of death is inﬂuenced by children’s encounters with it. It is the common experience of care providers that, due to their personal experiences with serious illness and medical treatment (and observations of hospitalised friends), even young children with life-threatening illnesses may acquire an accurate understanding of (their own impending) death long before their healthy counterparts (BluebondLangner, 1978; Evans, 1995; Weir and Peters, 1997; Van der Feen and Jellinek, 1998; Freyer, 2004). By the time they are faced with end-of-life decisions, many chronically ill children have acquired substantial context-speciﬁc experience through which they can understand the value of life and can weigh up alternatives and express consistent values based on a ﬁrm sense of identity, thereby demonstrating the moral and rational basis of wise decision-making (Alderson and Montgomery, 1996; Beidler and Dickey, 2001). Bearing in mind the disease-related experience, valid requests regarding end-of-life decisions, including euthanasia, are more probable in younger children than a valid consent to participate in a clinical trial (medical experiments) by an older child who lacks this contextrelated experience. Considering the existing evidence, it seems reasonable to conclude that certain minors, in certain situations, can be considered capable of acquiring sufﬁcient insight into their condition, situation and wishes and can be regarded as competent (i.e. as competent as adults) to decide on end-of-life issues. Thus, in end-of-life-decisions speciﬁcally, when the question arises on whether or not to respect a minor’s wishes, an individual assessment of his or her decision-making capacities regarding the decision at hand is appropriate. Leikin (1998) proposes that if a child has dealt with an illness for some time, understands the beneﬁts and burdens of treatment and can consider and make decisions related to the illness, and comprehends death and its implications for the family as well as for himself or herself, then that person, irrespective of age, is competent.

Euthanasia a ‘special decision?’ Does the same hold true for formulating a valid request for euthanasia; can a minor ever be considered competent to request euthanasia? Minors are allowed to make weighty decisions regarding their health care when judged to be competent, and often when parents and/or health care professionals agree. For instance, in Belgium competent minors have the right to refuse life-sustaining treatment, which means they will die. If they are allowed to refuse treatment and make decisions about life and death, then why are they

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not allowed to ask for their life to be ended intentionally, speciﬁcally by administering lethal substances? In the following paragraphs, we speciﬁcally address whether in deciding on whether euthanasia can be permitted, it is possible to justify excluding minors from the law. Euthanasia as risky and extraordinary Although no exception regime exists in the Netherlands, we notice that euthanasia is still considered an ‘especially risky’ option. This is reﬂected in the requirement that parents should agree with the minor’s request, when he or she is under the age of 16. We presume that this view is also implicitly held by all those who agree that while terminally ill minors may refuse life-sustaining treatment, they cannot request euthanasia. Euthanasia is often characterized as a ‘special case’ and as somehow more risky than other end-of-life decisions, which would justify putting extra safeguards in place, such as imposing additional requirements on minors’ capacities to decide. This would, at least, be in order when a risk-related standard of competence is used, as seems to be the case. Standards of this type place the threshold for competence (the required decision-making capacities) higher when more serious risks or more severe consequences are involved. But is a euthanasia decision really more risky than other end-of-life decisions? Using the standard working deﬁnition, the “risk” carried by an event is the product of two components: the magnitude, if realised, of the harmful or negative impact of the event and the probability that it will occur. Arguably, euthanasia involves a highly harmful event, namely death, and moreover, the event is irreversible and thus irreparable. If properly performed, the probability of the event equals one, certainty. It is difﬁcult to see, however, how euthanasia might be more risky than, for instance, a non-treatment decision. Although the timeframe between the decision and death is usually, though not necessarily, longer in a non-treatment decision than when lethal drugs are administered, the effects of both kinds of decision are just as certain to end with the death of the patient. The magnitude of the risk for those requesting euthanasia exactly equals the risk of refusing treatment. We would even argue that, for patients who desire it, euthanasia carries no risk at all. A risk is something one wishes to avoid, and those asking for euthanasia do not want to avoid death, but instead they would choose it. What they do want to avoid is intolerable suffering. Thus, in their opinion, needless suffering is the risk they take by not asking for their life to be ended. Perhaps some might argue that a person asking for euthanasia would not want to err because his or her life is involved. The negative impact of

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allowing minors to ask for euthanasia, then, would not be that they expose themselves to death, but rather to the potential error of wanting death when they really do not wish it. But accepting this, it remains difﬁcult to see how euthanasia could be different from other end-of-life decisions, for one can just as well erroneously refuse treatment as ask for euthanasia. Instead of focusing on the magnitude of the risk of requesting euthanasia, you could point out the extraordinary character of euthanasia. In our view, it is unlikely that euthanasia could be characterized as a special kind of decision, one that requires additional or different capacities in comparison with other end-of-life decisions. Presumably, the same decision-making capacities are required for choosing euthanasia as for making other difﬁcult decisions concerning life and death. You could also argue, however, that euthanasia is extraordinary because it expresses a wish to have oneself killed rather than merely being allowed to die. Many, including philosophers and physicians, believe that euthanasia differs from the refusal of treatment in that the latter somehow allows nature to take its course, whereas the former requires the intentional causation of death.15 Now let us simply concede that letting one die is different from killing. Killing requires an intentional ending of life, whereas letting one die does not necessarily involve that intention (Kuhse, 1987). For instance, a physician can decide to stop treatment in order to refrain from medically futile treatments, foreseeing that the patient will die as a result, but not intending the resulting death. Arguably, accepting the patient’s death as a consequence of a justiﬁed decision is different from deliberately killing the patient. Yet, we do not see how this distinction between merely foreseeing something and intending it could help in pinning down the special character of requesting euthanasia, as opposed to asking for another kind of end-of-life decision, nor how this distinction could be relevant to the question whether or not allowing someone to ask for euthanasia. We want to point out that the patient’s request and the intention underlying his or her request is key here. When a patient asks to withhold or withdraw lifesustaining treatment, and when he or she asks for euthanasia, in our view, the same intention underlies the request: dying, as opposed to suffering intolerably, in a manner consistent with one’s conception of dying with dignity. Or better stated: the chief aim is to relieve suffering and, to some, this implies dying, as in their view, the suffering is relieved in no other or better way. Therefore, even granted that the presence or absence of an intention to cause death constitutes an ethical difference, this does not help to deﬁne the presumed difference between asking to be allowed to die and asking to be killed. In both cases, the patient intends to die.

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What is different is that in euthanasia you require another individual to help you die. In this respect, we should stress the fact that no one is obliged to comply with this request, for as we shall see further, the physician can grant the patient’s request according to his or her own judgement and unique position on euthanasia. To conclude this section, if euthanasia could be characterised as a ‘special decision’ warranting an exception regime, then this does not apply only to minors but to adults as well. The proper question is why a request of a competent minor would be especially problematic? As stated earlier, we do not address the issue of whether or not euthanasia can ever be morally acceptable. Building on the current euthanasia laws in Belgium and the Netherlands, it is simply accepted that in some cases (as we have seen) euthanasia is permitted. If one accepts the legitimacy of a competent adult’s request for euthanasia, then why not when a competent minor requests it? In our opinion, if a problem with euthanasia as such exists, then this should hold true for both minors and adults. Consequently, if competent requests of minors are rejected on the basis of age alone, then this constitutes discrimination between minors and adults on the basis of an arbitrary and irrelevant criterion – especially in this context. Euthanasia in speciﬁc: presumptive vs. evidential standards Based on the quoted research results, we state that the current presumptive ageboundaries for legal competence regarding medical decision-making are often too high. For euthanasia in particular, we highlighted the fact that making endof-life decisions pertains to a speciﬁc subgroup of minor patients, the ones that experience having a life-threatening, incurable and/or chronic illness. We feel that an approach which leaves room for speciﬁc characteristics of these situations and individual capacities of the involved child is always appropriate, but a fortiori in the case of a euthanasia request. Some might say that the age-boundary to request euthanasia should be placed higher than with more ‘everyday’ health care choices, due to its ﬁnal consequences. In contrast, we feel that in this subgroup of minor patients, some minors, even at a young age, possess the requisite capacities to make these endof-life decisions, including a request for euthanasia. It might even seem more appropriate, then, to lower the current age-boundary for requesting euthanasia in Belgium. However, if set too low, a presumptive standard may include minors who are not functionally competent. While this presumption can always be rebutted in a speciﬁc case, it is nevertheless appropriate to set age-boundaries that reﬂect the capacities of the general population to which they pertain.

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Is the current age-boundary that is used in the Netherlands regarding minors and euthanasia ‘accurate’? Instead of answering the question of which ageboundary to adopt, we contend that within the speciﬁc context of euthanasia age boundaries are superﬂuous. There is no need for presumptive standards regarding the age at which minors can be considered competent to make this decision, since it is the validity of the individual’s request for euthanasia that should always be assessed. A request for euthanasia is, in itself, insufﬁcient; a functionally competent person should formulate this request. Thus, under the provisions of the Belgian and Dutch laws pertaining to euthanasia, even adults are not competent by presumption, and in each case, decision-making capacities and competence to request euthanasia should be assessed. The use of age boundaries is a purely economic device, to make things simpler. It is important to keep this in mind when addressing the question whether competent minors should be legally allowed to formulate euthanasia requests. It is hard to see how it would be more convenient to put presumptive standards in place, as each request necessitates a thorough inquiry, regardless of the person’s age. As we have demonstrated, ‘they can’t make such a decision’ is not a valid rebuttal because some, in fact, can, even at quite a young age. What is a valid rebuttal, however, is that competence is a blurry concept and assessing whether or not a minor patient can make this decision and is ‘up for it’ can prove a daunting task (Glass, 1997, p. 9; Wong et al., 1999; Ganzini et al., 2003). The same can, of course, be said about assessing the request of an adult patient, but since we generally presume adults to be competent, until proven otherwise, and we assume that minors require more protection, conﬁrming their decisional capacities is more important than with adults. While assessing the decisionmaking capacity of an individual (minor) is hard work and complexities surround the issue, it is pivotal in granting minor patients proper self-determination rights. We will not address the issue of assessing competence further, as this is beyond the scope of the paper. We merely state that each euthanasiarequest requires the physician, possibly with the help of colleagues and/or other health care professionals, to assess each individual and his or her speciﬁc situation. The clariﬁcation of a wish to die also implies the consideration of several other factors beside competence, or only vaguely related to competence, that might be inﬂuencing the minor’s decision: an underlying untreated depression, an unwarranted concern to protect her relatives against vicarious suffering, lacking quality of health care, and so on (Jamison, 2000). A formalistic and legalistic approach is thus not appropriate. Instead, thorough counselling with the minor patient and family is indicated. Considering that very few minors would request euthanasia, and that the majority of terminally ill adolescents and their parents have established, long-term relationships with

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their care providers (Freyer, 2004, p. 384), individual assessments seem feasible. In this respect, we state that the crucial point for all health care professionals involved “[. . .] is not to man the gate to assisted dying, but to nurture autonomous choice and diminish the anguish of the dying process” (Sullivan and Ganzini, 1998, p. 31). Our point of view will be further clariﬁed below.

Self-determination, well-being and parental interests Let us assume that certain minors, in certain situations, are capable of acquiring sufﬁcient insight into their condition and situation so as to be regarded as competent (i.e. as competent as adults) to request euthanasia. Having the capacity to make these decisions does not immediately confer on someone the right to make them. Restrictions on minors’ medical decision-making are called into existence as means for protecting children; legislation is designed to protect minors from the consequences of immature and improvident decisions. Granting minors decisional authority on these matters is also based on whether or not any other values, besides self-determination, or considerations are at stake that would force us to limit their self-determination rights. We cannot delve into this extensively; however, in the following section, we will highlight some relevant considerations pertaining to minors and euthanasia. Extreme ethic of self-determination? By questioning the age boundaries that govern euthanasia requests, we have focused mainly on competence as a pivotal demarcation-criterion, and implicitly, we have found it imperative to respect the autonomous choice of the patient. Opponents of euthanasia have stated that explicitly asking to end one’s life, by administering lethal substances to hasten death, embodies an extreme ethic of self-determination. For us, self-determination is an essential reason for allowing people to request euthanasia. Some people are forced to think about the beneﬁts and burdens of continued existence versus the prospect of death. In our view, only the person him or herself is entitled to weigh the one against the other. Does imparting this scope of deliberation to the patient boil down to some kind of extreme self-determination ethic? We believe not, for the following reasons. Euthanasia is not an exactable right; it cannot be demanded or commanded. The current euthanasia laws (and preferably those of the future) merely authorize the physician to comply with the patient request when certain requirements are met. The physician can grant the request according to his or her own

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judgement and is only obliged to inform the patient of reasons for refusing to comply. The available data show that in the Netherlands, 61% of euthanasia requests for 2001 were not performed. In half of these cases (32% of all requests), the physician turned down the request for some reason (Van der Wal et al., 2003). One of the reasons that can sway a physician into compliance with a euthanasia request is a desire to respect the wishes of a competent patient. Legally speaking, under the current euthanasia laws, this is a necessary and sufﬁcient condition. It could very well be the case, however, that the physician interprets a valid request as a necessary, but by no means sufﬁcient, motive. Beyond the condition that the request be a competently formulated choice, a physician may choose to comply with the request, not solely on the basis of respecting the patient’s autonomy, but also out of compassion for an unbearably suffering, terminally ill patient. It is even unlikely that people, who consider euthanasia for minors as (morally) permissible in some circumstances, would solely be motivated by an ethic of self-determination. Young children and adolescents experience pain and suffering, which sometimes cannot be alleviated, in largely the same way as adults. The wish to relieve a young person from suffering will probably serve as a strong motive, which lies at the base or is compounded with the wish to respect patient choice. Every day, minor patients cope with chronic conditions and struggle to survive with life-threatening illnesses; they contemplate the burdens of continued existence as compared with the prospect of death. Occasionally, a patient concludes that death is preferable to the suffering being experienced (Weir and Peters, 1997). The capacity of modern medicine to extend life is now so advanced that there is concern that the prolongation of life may become the sole end, irrespective of the harm it may impose. When one accepts that a right to live does not entail a duty to live, and that some forms of living can be unbearable, then one can concede that it may be in the best (or a fundamental) interest of the child to allow the shortening or ending of his or her life. Euthanasia allows patients to shorten intolerable, undesired and hopeless suffering in a manner consistent with their own conceptions of dying with dignity. Sometimes, there are other means available to shorten suffering, for instance terminal sedation,16 but not all are consistent with a person’s conception of dying with dignity. If one agrees that euthanasia can be considered as morally permissible when it is an explicit and well-considered choice by an individual, then age cannot be the determinative factor for excluding certain (categories of ) persons. Age is not the right demarcation-criterion for children who suffer from a painful and incurable disease. Allowing minors to request euthanasia accords them the full right to participate in the process of assessing, clarifying and expressing their wishes at the end of their life. Their expressions of preference, when taken seriously by medical care providers and parents

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alike, are crucial “efforts of moral persuasion,” as termed by Weir and Peters (1997, p. 35). Limiting self-determination? Joint decision-making on medical decisions regarding minors is widely endorsed by health care professionals and relevant bodies of expertise. The child’s parents are essential partners in the decision-making process, and their interest in making important choices about the welfare of their minor children is commonly recognized as a substantial value in decisions about health care treatment for children (Buchanan and Brock, 1990). Some hold that, regardless of a child’s maturity, giving the child autonomy in treatment decisions leads to inevitable and unnecessary conﬂict. Parents should have primary authority over decisions affecting the welfare of their children, even when they are functionally competent, and in this line of thinking the notions of protection and parental rights are fundamental and override self-determination. L.F. Ross believes that recognising the specialised claim of an adolescent’s right to decide on a health care matter sets a troubling precedent for adolescent rights in wider society (Ross, 1997). However, as Freyer notes (2004, p. 383): “It would seem difﬁcult to predicate a compelling argument for expanding societal rights for minors on the extraordinary circumstances of terminal illness, where the notions of well being and autonomy take on rather different meanings”. Limitations of children’s autonomy are often motivated by the desire to prepare them for adulthood, to give them an education and to preserve their chances to an open future (Feinberg, 1980). Ross argues that present-day autonomy is precisely what must be sacriﬁced so that a minor may eventually gain the life and decision-making experience necessary for developing longterm autonomy (Ross, 1997). This is a relevant contention, and it is indeed appropriate to acknowledge cautionary views about granting decisional authority to minors, although these views must be evaluated in the context of terminal illness. In some medical contexts, especially when a child is dying, the long-term responsibilities appear in a somewhat different light. Unfortunately, the only form of autonomy relevant to the dying young person is present-day autonomy, since there is no prospect for long-term autonomy (Freyer, 2004, p. 383). Consequently, limiting the child’s decisional authority in order to protect long-term interests that the child no longer possesses would be deplorable and could, in fact, counter the child’s present-day interests, in particular that of shortening unbearable suffering. The death of a child is universally seen as one of the most tragic experiences, but, equally, there is a clear awareness that futile and invasive overtreatment must be avoided. The side effects and other burdens of treatment may not be

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matched by a genuine prospect of signiﬁcant and sustained improvement (British Medical Association, 2001, pp. 4 and 25). Death sometimes is the least bad option. The view that nowadays receives the most informed support is that the parental role as primary decision maker gradually fades as the child develops in maturity, although the importance of parents as a source of emotional support and advice should, ideally, remain (BMA, 2001, p. 19). Health care professionals also have a fundamental obligation to focus on the interests of the patient and to provide beneﬁt for that person. In this respect, we agree with the Canadian Paediatric Society (2004), who in their guidelines state that although the impact on the family – such as the burdens and harms they might experience – must be considered in end-of-life decision-making, these interests should not be allowed to override those of the child or adolescent. Although they usually coincide, the interests and/or views of the child and those of the parents are not automatically synonymous in every case (BMA, 2001, p. 3). Fortunately, based on anecdotal information from paediatricians and also mentioned by Freyer, it seems that disagreement between the child and the parents on end-of-life decisions is highly exceptional and can usually be avoided (Freyer, 2004). You can have it both ways You might say that while some are capable of making these decisions, minors should not be burdened with them, nor should they be left alone in the decisionmaking process. The reality of a child who is suffering from an incurable and life-threatening illness is extremely trying for all involved, parents, siblings, other familymembers, friends and health care professionals, and decisions in this context are never taken light-heartedly. Parents have a central desire to be able to care for their child in accordance with their role as a nurturing and responsible guardian. Allowing the child to request euthanasia is never easy, and this can involve feelings of guilt: have we abandoned our child? Let us plainly face the fact that there is something horriﬁc about the prospect of intentionally ending a child’s life at an appointed time. When defenceless children are involved, the idea that ‘the healthy’ abandon a broken patient at the moment he or she most needs them (Ricoeur, 1990) seems even more poignant. The idea of abandonment, in relation to euthanasia, is very forcefully expressed in the papal bull Donum Vitae.17 Allowing euthanasia is paralleled to the perﬁdy, as in the question of Cain: “Am I my brother’s keeper?” The answer: “You are!”

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It is often feared that children will lose their right to protection when they participate in their own treatment decisions. When one ‘receives’ the right to make one’s own choices, the burdens and responsibilities which adult status entails are added and result in a loss of rights to protection: ‘you can’t have it both ways’. In fact, minors can have it both ways; they can enjoy self-determination rights while receiving support and assistance throughout their participation in the matters affecting them. In general, our contention is that participation in their care is essential to their welfare and does not preclude protection. Let us get one thing out of the way ﬁrst: even competent minors do not have to make decisions regarding their care, and they certainly do not have to do so on their own. Children want to be allowed to make decisions when they feel ready for it (Cherney and Perry, 1994; Boylan, 2004). The minor patient is entitled to indicate in what way and to what degree he or she wants to be involved and may state wishes about further care. In this respect, no difference between adults and minors exists. Patients have a right to be informed about aspects of their own health, but they can also choose not to receive detailed information and can exempt themselves from decision-making (via waiver) that seems too difﬁcult or emotionally taxing by asking someone else to decide for them (BMA, 2001). Some children and adolescents do possess the ability and desire to make their own decisions: thus physicians should carefully assess these factors, encourage joint decision-making by patients, families and the health care team, and support capable patients who wish to make their own choices. The more children are dependent on the protection and support of their parents and other adults, the more the attention and empathy of health care professionals should be focused on the needs of children: this asks for support, advocacy and empowerment. Again, for some minors only present-day autonomy is relevant and important. A sense of control of an, in essence, uncontrollable situation decreases anxiety and can enhance coping (McCabe, 1996; Van der Feen and Jellinek, 1998, Rushforth, 1999). Ideally, children should be given as much control and decision-making power as possible in their own treatment to help alleviate feelings of helplessness and to make them feel more empowered (Van der Feen and Jellinek, 1998; Melton, 1999). Furthermore, self-determination should not be conﬂated with independence and being left alone in decision-making. There is no logical connection between afﬁrming self-determination and negating vulnerability. Respecting the autonomy of a functionally competent minor does not necessarily equal deciding in lonely isolation without support (Alderson and Montgomery, 1996a,b). You could say that all patients who are seriously ill ﬁnd themselves in a dependent, vulnerable position. Euthanasia would certainly be an evil if it

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meant denying support to the dying and treating them as if they were as selfsufﬁcient and vigorous as when healthy. Complying with a patient’s request for euthanasia is inseparable from the communicative framework wherein the request is embedded. In current euthanasia law, the consultation structure is ﬁxed in legal standards for decision-making. In order to comply with the basic requirements of prudent practice, the physician should have several thorough consultations with the patient and relatives, as chosen by the patient. Furthermore, the physician must consult one or two colleagues, depending on the case at hand. These are the basic requirements of adult decision-making regarding euthanasia. We would like to stress that for minors additional care should be taken to support the patient in decision-making, and additional prudential considerations may be introduced. This is done so in order to avoid errors in complying with a euthanasia request that should have been turned down. As stated earlier, protecting the minor and granting self-determination should be reconciled. In our view, minors who are gravely or terminally ill should not be submitted to endless tests and expected to meet much more stringent requirements than adults simply based on their minority status. In contrast, additional support and counselling should be provided. We should add that, ideally, these ‘good practice’ guidelines are already incorporated into the care of the minor patient from the early stages onwards. Being seriously ill is mostly very incapacitating. Steps must be taken to minimalise the burdens, while ensuring that the beneﬁts of involving the child are optimalised. Not all the ‘work’ should be done at the ﬁnal stages of their lives, for many will no longer be up to it. From the early stages on, the wishes of the child regarding care should be explored and evidence regarding capacities should be obtained. A kind of ‘value history’, with the strengths, vulnerabilities, values and preferences of the child and the family, should be mapped out, which is continually updated. The possibility of open communication should be conveyed to the child, and signs that the child desires to discuss these issues should be noticed. Speciﬁed moments and methods to address the issues pertaining to end-of-life care should be carefully chosen. In yet another sense, the allowance of euthanasia rather than the simple forbidding of it would better protect minors. Incidence data on end-of-life decisions (in all countries where available) show that a considerable number of these decisions are made without previous discussion or consent of the patient and/or relatives (Van der Heide et al., 2003). In contrast, euthanasia, by deﬁnition, necessitates a request made by the patient, as well as several other requirements pertaining to this request and other safeguards of prudent practice. Doctors complying with a minor’s request for euthanasia are legally obliged to respect these safeguards, which are well-speciﬁed, legally ﬁxed and publicly controlled, which is not the case with other end-of-life decisions.

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The slippery slope argument is often heard when the issue of allowing (competent) minors to request euthanasia is raised. We do not propose to change the requirements for a valid euthanasia request, but rather to eliminate unjustiﬁed age-discrimination. Therefore, the concept of euthanasia does not slide into a weaker version that implies an enfeeblement of the current requirements. While a category of persons is now included that previously was not (except in the Netherlands), we have argued that their categorical exclusion was unwarranted. And what about (younger) children who are incompetent to make such decisions?18 For us, end-of-life decision-making without a valid, competent request seems to be a far more difﬁcult issue (which is beyond the scope of this paper) than the one addressed.

Conclusion In this paper we have addressed some justiﬁcations that are frequently raised to exclude minors from making serious and difﬁcult decisions pertaining to their medical care, and, in particular, for requesting euthanasia. The argument from incompetence was countered as being both irrelevant and invalid in the ensuing debate over minors and euthanasia requests. No warrants were found to justify the exception regime barring minors from opting for euthanasia, while allowing adults freely to choose it. If euthanasia remains legally allowable for adults, should a minor competently and validly request euthanasia, it would be a discriminatory act to deem this wish unacceptable on the basis of age alone. We argued in favour of including competent minors in the population to which the euthanasia law applies. We noted that by doing this, the protection of minors increases, as the safeguards of prudent practice for euthanasia are well-speciﬁed, legally ﬁxed and publicly controlled. We recognise that the seriously ill child or young person particularly needs assistance and support, as both illness and young age tend to relate to an increased dependency and vulnerability. In this respect, we have left opportunity for additional prudential considerations regarding minors, and we have advocated for an approach that reconciles self-determination and protection. In each case, an assessment of the individual’s decision-making capacities and the validity of his or her request should be made. A formalistic and legalistic approach is thus not appropriate. Instead, thorough counselling with all involved parties is essential. The interests of the minor patient are paramount, and, ideally (and usually), there should be agreement on which course to follow. Pretending to have all the answers is certainly not our intention, instead, we aim to deepen the discussion on these delicate issues.

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Notes Minors are under 18-year-olds, with 18 as the age of legal majority in Belgium. Belgium: Law concerning Euthanasia, 28th May 2002. The Netherlands: Law concerning control of life ending upon request and assisted suicide, 12th April 2001. 3 In the Netherlands, the position of minors was debated in the Second Chamber on November 21, 2000. Intervention of MP Rouvoet. Second Chamber Piece 25–2043–44. 4 Rough estimation based on the database used in Deliens, L.; Mortier, F.; Bilsen, J.; Cosyns, M.; Vander Stichele, R.; Vanoverloop, J.; Ingels, K., “End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey”, The Lancet 2000 (356), 1806–11; Prof. W. Distelmans (2002) personal communication. 5 National Disciplinary Board of Physicians (Nationale Raad van de Orde der Geneesheren), Advise on Euthanasia January 15, 2000; March 22, 2003. 6 This is not to say that allowing euthanasia or seeing it as morally acceptable is self-evident, but that we shall not go into this discussion in this paper. Here we address the question why minors are treated differently from adults with respect to (the legislation of ) euthanasia. 7 See further for a clariﬁcation of this distinction. 8 See for instance: Ambuel, B. and Rappaport, J., “Developmental trends in adolescents’ psychological and legal competence to consent to abortion”, Law and Human Behavior 1992 (16), 129–54. 9 This might be the case for certain problem-related treatments, such as sexually transmitted diseases, contraception, drug abuse and psychiatric problems. See for instance: Brody, J.L. and Waldron, H.B., “Ethical issues in research on the treatment of adolescent substance abuse disorders”, Addictive Behaviors 2000 (25), 217–28; Committee on Adolescence, American Academy of Pediatrics , “The adolescent’s right to conﬁdential care when considering abortion’, Pediatrics 1996 (97), 746–51. 10 A minor may consent if he will be in serious danger unless health care services are provided (emergency care) – in this case he or she is a ‘conditional minor’. This is not based on the minor’s capacity to consent, but on a theory of implied consent by the parents. 11 Emancipated minors are those who live independently of their parents. They may consent to medical care, and refuse it, as if they were adults. The criteria for emancipation vary, e.g. marriage, parenthood, ﬁnancial independence. In: Kunin, H., “Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication”, Ethics & Behavior 1997 (7 (1)) 43–57. 12 For example, in the UK consent to treatment of a 16-year-old should be sought and this consent shall be as valid in law as if he or she were an adult. 13 The ‘mature minor doctrine’ is the common-law rule (originated in the USA) that allows an adolescent who is mature to give consent for medical care. See Sigman, G.S. and O’Connor, C., “Exploration for physicians of the Mature Minor Doctrine”, Journal of Pediatrics 1991 (119 (4)), 520–25; for the Belgian equivalent of the Mature Minor Doctrine: see Van Slycken, L., “Beschikkingsrecht van de minderjarige over eigen leven en lichaam”, in: Over zichzelf beschikken? Juridische en ethische bijdragen over het leven, het lichaam en de dood (Antwerpen/Apeldoorn: MAKLU, 1996). 14 In Gillick v West Norfolk Area Health Authority [1985] 3 All ER 492, the House of Lords gave guidance on what consent can be given by children. The case concerned a challenge by Mrs Gillick of the legality of advice provided to doctors by the Department of Health that in certain exceptional circumstances a doctor could give girls under 16 contraceptive advice and treatment without the consent, involvement or knowledge of their 1 2

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parents. The parental right to determine whether or not a child below the age of 16 will or will not have medical treatment terminates if and when the child achieves sufﬁcient understanding and intelligence to enable him to understand fully what is proposed. It is for the doctor to decide whether or not an individual child is Gillick competent or not. 15 See for instance: Quinn, W.S., “Actions, intentions, and consequences: The Doctrine of Doing and Allowing”, Philosophical Review 1989 (98), 287–312. 16 Terminal sedation means bringing the patient into a deep sedation or coma until death. This may take some hours to several weeks. Terminal sedation is often practiced while simultaneously withdrawing artiﬁcial hydration and feeding, but not necessarily so. 17 John Paul II, Evangelium Vitae, 1995, § 8. 18 The same applies to the severely demented elderly and other incompetent persons.

References Alderson, P., Young Children’s Rights. Exploring beliefs, principles and practice. (London/New York: Jessica Kingsley Publishers, 2000). Alderson, P. and Montgomery, J., Health Care Choices. Making decisions with children (Institute for Public Policy Research, 1996a). ———, “What about me?”, Health Service Journal 1996b (11), 22–4. Beidler, S. and Dickey, S., “Children’s competence to participate in healthcare decisions, JONA’s Healthcare, Law, Ethics, and Regulation 2001 (3 (3)), 80–87. Bioethics committee, Canadian Paediatric Society, “Treatment decisions regarding infants, children and adolescents”, Paediatrics and Child Health 2004 (9 (2)), 99–103. Bluebond-Langner, M., The private worlds of dying children (Princeton, New Jersey: Princeton University Press 1978). Boylan, P., “Children’s voices project. Feedback from children and young people about their experience and expectations of health care”, Report Commission for Health Improvement 2004, http://www.healthcarecommission.org.uk/assetRoot/04/01/27/17/ 04012717.pdf. British Medical Association, Consent, rights and choices in health care for children and young people (London: BMJ Books, 2001). Buchanan, A.E. and Brock, D.W., Deciding for others. The ethics of surrogate decision making (Cambridge UK: Cambridge University Press, 1990). Checkland, D., “On risk and decisional capacity”, Journal of Medicine and Philosophy 2001 (26 (1)), 35–59. Cherney, I. and Perry, N.W., “Children’s attitudes toward their rights: An international perspective”. In Verhellen, E. (ed.), Monitoring children’s rights (The Hague/Boston/ London: Martinus Nijhoff Publishers, 1994). Crisp, J.; Ungerer, J.A.; Goodnow, J.J., “The impact of experience on children’s understanding of illness”, Journal of Pediatric Psychology 1996 (21 (1)), 57–72. Deliens, L. and Van der Wal, G., “The euthanasia law in Belgium and the Netherlands”, The Lancet 2003 (362), 1239–40. De Lourdes, L.M.; Larcher, V.; Kurz, R., members of the Ethics Working Group of the CESP, “Informed consent/assent in children. Statement of the Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP)”, European Journal of Pediatrics 2003 (162), 629–33. Drane, J.F., “The many faces of competency”, Hastings Center Report 1985 (15 (2)), 17–21.

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Elliston, S., “If you know what’s good for you: refusal of consent to medical treatment by children”, in: McLean, S. (ed.), Contemporary issues in law, medicine and ethics (Aldershot: Dartmouth, 1996). Evans, J.L., “Are children competent to make decisions about their own deaths?”, Behavioral Sciences and the Law 1995 (13), 27–41. Feinberg, J., “The child’s right to an open future”, in Aiken, W. and LaFolette, H. (eds.), Whose Child? Children’s Rights, Parental Authority and State Power (Totowa N.J.: Littleﬁeld, Adams & Co., 1980). Freyer, D., “Children with cancer: Special considerations in the discontinuation of life-sustaining treatment”, Medical and Pediatric Oncology 1992 (20), 136–142. ——— “Care of the dying adolescent: special considerations”, Pediatrics 2004 (113 (2)), 381–388. Ganzini, L.; Volicer, L.; Nelson, W.; Derse, A., “Pittfalls in assessment of decision-making capacity”, Psychosomatics 2003 (44), 237–43. Glass, K.C., “Reﬁning deﬁnitions and devising instruments: Two decades of assessing mental competence”, International Journal of Law and Psychiatry 1997 (20 (1)), 5–23. Grisso, T. and Vierling, L., “Minors’ consent to treatment: A developmental perspective”, Professional Psychology 1978 (78), 412–27. Harrison, C.; Kenny, N. P.; Sidarous, M.; Rowell, M., “Bioethics for clinicians 9: Involving children in medical decisions”, Canadian Medical Association 1997 (156 (6)) 825–28. Hill, M., and Tisdall, K., Children and society (London and New York: Longman, 1997). Jamison, S., “Factors to consider before participating in a hastened death. Issues for Medical Professionals”, Psychology, Public Policy and Law 2000 (6), 416–33. King, NMP. and Cross, A.W., “Children as decision-makers: Guidelines for pediatricians”, Journal of Pediatrics 1989 (115), 17–22. Koocher, G.P. and DeMaso, D.R., “Children’s competence to consent to medical procedures”, Pediatrician 1990 (17 (2)) 68–73. Kuhse, H., The Sanctity-of-Life Doctrine in medicine. A critique (Oxford, Clarendon Press, 1987). Kunin, H., “Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication”, Ethics & Behavior 1997 (7 (1)) 43–57. Kuther, T.L., “Medical decision-making and minors: issues of consent and assent”, Adolescence 2003 (38 (150)), 343–58. Leikin, S. “A proposal concerning decisions to forego life-sustaining treatment for young people’, Journal of Pediatrics 1989 (115), 17–22. Lewis, C.C., “Minor’s competence to consent to abortion”, American Psychologist 1983 (42(1)), 84–8. Lowden, J., Children’s rights: a decade of dispute”, Journal of Advanced Nursing 2002 (37 (1)), 100–107. McCabe, M.A., “Involving children and adolescents in medical decision-making: Developmental and clinical considerations”, Journal of Pediatric Psychology 1996 (21 (4)), 505–16. Melton, G.B., “Parents and children: Legal reform to facilitate children’s participation”, American Psychologist 1999 (54), 935–44. Ricoeur, P., Soi-même comme un autre (Paris: Seuil, 1990). Ross, L.F., “Health care decision-making by children. Is it in their best interest?”, Hastings Center Report 1997 (27 (6)), 41–5. Rushford, H., “Practitioner’s review: Communicating with hospitalised children: review and application of research pertaining to children’s understanding of health and illness”, Journal of Child Psychology and Psychiatry 1999 (40 (5)), 683–91.

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Scott, E.S.; Reppucci, N.D.; Woolard, J.L., “Evaluating adolescent decision making in legal contexts”, Law and Human Behavior 1995 (19 (3)), 221–44. Sullivan, M. and Ganzini, L., “Should psychiatrists serve as gatekeepers for physicianassisted suicide?”, Hastings Center Report 1998 (28 (4)), 24–31. Van der Feen, J.R. and Jellinek, M.S., “Consultation to end-of-life treatment decisions in children”, in: Steinberg, M.D.; Youngner, S.J. (eds.), End of life decisions: A psychosocial perspective (Washington DC: American Psychiatric Press, 1998). Van der Heide, A.; Deliens, L.; Faisst, K.; Nilstun, T.; Norup, M.; Paci, E.; Van der Wal, G.; Van der Maas, P., “End-of-life decision-making in six European Countries: descriptive study”, The Lancet 2003 (362), 345–50. Van der Wal, G.; Van der Heide, A.; Onwuteaka-Philipsen, B.; Van der Maas, P.J., Medische besluitvorming aan het einde van het leven. De praktijk en de toetsingsprocedure euthanasie (Utrecht: De Tijdstroom, 2003). Weir, R.F. and Peters, Ch. “Afﬁrming the decisions adolescents make about life and death”, Hastings Center Report 1997 (27 (6)), 29–40. Weithorn, L.A. and Campbell, S.B., “The competency of children and adolescents to make informed treatment decisions”, Child Development 1982 (53), 1589–98. Wilks, I., “The debate over risk-related standards of competence”, Bioethics 1997 (11), 413–26. Wong J.G.; Clare C.H.; Gunn M.J. and Holland A.J., “Capacity to make health care decisions: its importance in clinical practice”. Psychological Medicine 1999 (29), 437–46. Zinner, S.E., “The elusive goal of informed consent by adolescents”, Theoretical Medicine 1995 (16 (4)), 323–31.

Our Inheritance, Our Future: Their Rights? SHEILA A.M. MCLEAN International Bar Association Professor of Law and Ethics in Medicine, University of Glasgow

J. KENYON MASON Professor (Emeritus) of Forensic Medicine and Honorary Fellow, School of Law, University of Edinburgh

Introduction The recent U.K. Government White Paper, Our Inheritance, Our Future (2003), is interestingly sub-titled ‘Realising the potential of genetics in the NHS’. The importance attributed to genetics and genetic services for the future of health and healthcare in the United Kingdom is restated by the Secretary of State for Health in his Foreword to the White Paper (2003, 5). Developing the potential of genetics and genetic services is the ‘vision’ (2003, 5) encapsulated in this document: ‘that the NHS should lead the world in taking maximum advantage of the application of the new genetic knowledge for the beneﬁt of all patients’ (2003, 5). This commitment follows the Government’s allocation of £30 million in 2002, and is underlined by Dr Reid’s pledge in this document to invest a further £50 million in England ‘in developing genetics knowledge, skills and provision within the NHS.’The air of enthusiasm that permeates the White Paper is, perhaps, unsurprising given both the assumption of beneﬁt that genetics holds for healthcare, and the composition of the Advisory Panel, the majority of whom have a direct professional interest in genetics and genetic services. Nevertheless, one cannot fail to recognise the excitement that has been generated by the so-called genetics revolution even amongst those with little experience in the ﬁeld. Equally, of course, this revolution has generated considerable anxiety and concerns about its possible implications. While it may be the case that ‘[g]reater knowledge of genetics will have a major impact of our understanding of human illnesses and herald a step-change in disease prevention, diagnosis and treatment . . .’ (2003, 7), the White Paper also recognises that ‘there are difﬁcult moral issues raised by genetics advances . . .’ (2003, 7). One of these issues revolves around the issue of screening of children, a matter raised in chapter 3 of the White Paper. Paragraphs 3.28–3.39 outline the Michael Freeman (Ed.), Children’s Health and Children’s Rights, 279–296. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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strategy for future screening programmes and propose speciﬁc antenatal and neonatal screening tests that are to be made available either immediately or in the near future.

Screening programmes for genetic disorders At this point, the difference between screening and testing becomes important. The White Paper essentially covers both, without identifying or clarifying the issues which may arise from the distinctions between the two. The results of screening may be similar on occasion to those which ﬂow from testing, but the intention behind each is different, as are some of the consequences. We feel that this situation should be clariﬁed before we proceed to further analysis. By and large, ante-natal genetic screening is population based, albeit carried out on a selected population – pregnant women. It is, in our view, designed to establish the occurrence of harmful genes within that population and has two main objectives. The ﬁrst is purely demographic and this carries its own special socio-political problems with which we are not, here, concerned. The second is designed to control the ‘gene pool’ in the general population; as such, and despite the unfortunate connotations, it can be described as eugenic. Thus, the programme described in the White Paper, para. 3.31, bullet point 2, is undoubtedly a screening programme. By contrast, the post-natal programme described in para. 3.31, bullet point 1, is clearly designed to target individual neonates and is, accordingly, better considered as a testing programme. Similarly, say, the ’screening’ programme for cystic ﬁbrosis that is offered is actually an offer to ‘test’ all newborn babies for the relevant gene. This is more than a semantic quibble. It is apparent that screening programmes as deﬁned here have negligible impact on those who are children at the time they are conducted.1 Genetic testing, however, as proposed in the White Paper, is aimed at children and strikes at the heart of children’s rights. Additionally, the problems associated with the identiﬁcation of disorders of any sort can be looked at in two ways. In the ﬁrst, one can look at the practicalities and ethical principles that underlie screening programmes as a whole. Many of the arguments both for and against such measures as applied to genetic disease have already been well-rehearsed and we reconsider them below. Alternatively, one can isolate speciﬁc genetically controlled conditions and review the advantages and disadvantages of testing for them on an individual basis. This is the route we intend to travel initially, paying particular attention to the conditions selected for mention in the White Paper (2003, paras. 3.28–3.31); a consideration of these priorities may serve to disclose the Government’s general intentions.

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It is, however, to be noted that the proposals are not uniform, in that they involve both antenatal and neonatal testing – and, in some instances, for the same condition. This is of major practical and ethical importance. Antenatal screening has, amongst others, the speciﬁc objective of ‘enabling more informed reproductive choice’ for women themselves (2003, para. 3.33) but, as the BMA notes: Prenatal diagnosis and screening, whilst often seen as an unquestionable good, present parents with dilemmas which, with hindsight, they might prefer to have avoided. The availability of information requires decisions to be made. Once an unfavourable result to prenatal genetic testing has been provided, the woman must make a positive decision whether to act on the results; ‘leaving it to fate’ is no longer a neutral act. (BMA, 1998, 50)

Once having accepted screening, the choice is stark and, in many cases, lies between continuing and terminating the pregnancy – and the latter is undeniably performed on the basis of disability in the foetus.2 An antenatal genetic screening programme can, thus, be seen as coming dangerously close to a eugenic programme – one in which the political parcel is passed to the patient, and one which, once again, moves the intervention closer to a testing rather than a screening exercise, the anticipated outcome of which is also likely to be the termination of an affected pregnancy. Indeed, as Whittaker has said (1992, 296): [w]ith the availability of genetic tests, bringing an affected child into the world could be construed by some as reproductive irresponsibility.

Neonatal testing, by contrast, is directed to the detection of established genetic abnormality and, hence, to forewarning of possible clinically evident genetic disease. As such, it is a process that is imposed on a non-consenting subject and, given the current emphasis on personal autonomy as the mainstay of ethical medical practice, this can be done only if it is in the subject’s best interests. These interests will, of course, vary according to the individual under consideration. It follows that any speciﬁc test used as a screening procedure must conform to analysis based on this principle.3 As we will consider later, it is by no means certain that all genetic testing of the newborn will be to the advantage of the developing child or of the adolescent or adult that he or she may become4 – and this caveat is not conﬁned to the identiﬁcation of potential late-onset disease.5 Looking further forward, however, we ﬁnd that the Government’s intentions are rather more ambitious in that, in addition to spelling out its immediate policy, it ﬂoats the ‘long term’ possibility that genetic proﬁling at birth may be used to create ‘a comprehensive map of children’s ‘key genetic markers or, even, their entire genome’ (2003, para. 3.36, pp. 44–45). This, it is postulated,

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could ‘be used throughout their lifetime to tailor prevention and treatment regimes to their needs as further knowledge becomes available about how our genes affect our risk of disease and our response to medicines’ (2003, para. 3.36). Certainly, the authors of the White Paper appreciate the concerns likely to be raised by such a programme and the text speciﬁcally states that it would be subject to ‘voluntary participation’ (2003, para. 3.37) – but this is impossible from the point of view of the child who is being proﬁled. We address this problem in detail in the next section. For the present, we do no more than re-emphasise that a proﬁle is but the sum of its parts and, like it or not, the information obtained from the individual tests is there for the rest of the child’s life, yet s/he has had no voice in how, why, whether or when it is obtained. In summary, the ethical repercussions of genetic screening and testing are such that generalisations are seldom helpful and it becomes essential to consider individually the inﬂuence that each inquiry that is recommended within the Government’s programme exerts on children’s rights. We will do this initially with speciﬁc reference to those enumerated in the White Paper.

The tests proposed Down’s Syndrome The Paper commits the Government to ensuring that all women are offered ante-natal screening for Down’s Syndrome. Given that a high proportion of pregnancies in the UK are already screened for this condition, it is unlikely that this recommendation (or the counselling to be associated with it) will generate much controversy. It must, however, be borne in mind that there are some for whom such screening is objectionable in so far as it offers termination of an affected pregnancy as a main option. Looked at from a rather different aspect, the inclusion of universal screening for foetal Down’s Syndrome for all pregnant women as a ﬂagship intention demonstrates what is, to us, a general element of inconsistency in this sector of the White Paper’s proposals. It falls outside the general tenor of the debate in that, save in the rare event of it being due to a translocation trisomy, the recurrence risk is related almost entirely to maternal age. For practical purposes, the community ‘gene pool’ is unaffected by the birth of a Down’s baby and no treatment is available for the child itself. The proposal is suspect on many other grounds6 but perhaps the most important parameter lies in the ‘best interests’ of the foetus. Using current testing methods, there is no way in which one can assess the extent of foetal disability and a Down’s child who has no physical defects is probably perfectly happy.

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No matter how skilful is the counselling offered, the pregnant woman is, perforce, making a blinkered decision. The choice is, however, of the allor-nothing variety; a positive test can be ignored or it can be regarded as an invitation to prevent the emergence of a disabled child. Down’s syndrome raises, with particular clarity, the persistent dilemma – is a termination of pregnancy morally right because it is legally permitted? Congenital deafness It is expected that all babies born after 2005 will be tested for hearing defects (2003, para. 3.29). The incidence of childhood hearing defect is about 1:10,000 live births (or 900 cases in the United Kingdom each year) of which some 50% are genetic in origin; testing for the gene mainly responsible is said to be economically feasible despite the small numbers affected.7 It is difﬁcult to imagine that any parent would object to screening for a condition in which early recognition is of major importance to the child. It is, however, to be noted that the test offered is purely physical and is not speciﬁcally directed to genetic disease. It is not easy to see why this, otherwise admirable, project should form so prominent a part in a ‘genetic revolution’. Cystic ﬁbrosis Cystic ﬁbrosis is the commonest autosomal recessive disorder in Caucasian Europeans amongst whom the established disease occurs in about 1:2000 live births. The White Paper states that work is in hand to offer cystic ﬁbrosis screening to all newborn babies but, again, we have to question the purpose behind this proposal. The ethical difﬁculties are two-fold. First, the gene can express itself as anything from a mild condition to one that is rapidly fatal and, second, the treatment is symptomatic and is largely conﬁned to antibiotic therapy as and when infection arises. This is a condition where it seems that the only result of a positive neonatal test in the absence of an indication for testing is that the parents can be told that their child is likely to be unwell. It, then, illustrates par excellence the dilemma that is inherent in post-natal screening – if feticide was a legal option were the test available in utero, why is neonaticide not available when a post-natal test leaves us in the same position? One wonders what is the purpose of the test since that option is intolerable? Indeed, in 1997, a workshop held in the US concluded that ‘. . . . before recommending universal CF screening for newborns as a routine public health intervention, policymakers will need more compelling data about its effectiveness’ (1997, 16).

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The thalassaemias and sickle cell disease Screening programmes for sickle cell disease and thalassaemia are being developed (2003, para. 3.31). The recommendations are that, by the end of 2004: – A newborn screening programme will be in place offering screening for sickle cell disease. This will cover around 320,000 births per year and pick up around 90% of affected infants – An antenatal screening programme for sickle cell and thalassaemia will be in place aiming to offer screening to around 200,000 pregnant women a year, initially targeting areas of high prevalence for these diseases (2003, para. 3.31). To speak of ‘a’ test for either thalassaemia or sickle cell disease is, of course, to over-simplify the problem – there are variations on each condition, they can be mixed and, to an extent, the severity of the disease is also variable. Again, treatment is not of the disease but, rather, of the resulting anaemia – i.e. by way of blood transfusion and management of any consequent iron overload. As a consequence, the haemoglobinopathies particularly demonstrate the economic paradox – the better the socio-economic conditions, the greater the economic strain imposed on society by long-term incurable disease. The natural distribution of the responsible mutant genes corresponds to a great extent with areas of economic hardship; as a consequence, something of an ecological balance has evolved. Improving the health care of the affected population – and, particularly of the infant population – disturbs this balance and can signiﬁcantly increase the resource related problems of the responsible health service. As a consequence, some countries have introduced essentially eugenic policies such as pre-marital testing – and the effect, which rests on acceptance, seems to depend, in turn, very much on how the programme is presented (Mueller and Young, 1995, ch. 22). As a consequence, this aspect of the Government’s proposals, which are essentially demographic and directed to health care planning, merit particular consideration. The ethnic distribution of the haemoglobinopathies is complex, but the base-line fact is that they are very uncommon in northern Europeans. Both a- and b-thalassaemias are most common in Asian communities though the latter, in particular, are very prevalent in the Mediterranean.8 Sickle cell disease is very largely associated with Africa and, consequently, the Caribbean, but it also occurs endemically in Arabic countries and in India and Pakistan. It follows that, before any screening for these conditions is acceptable, it must be shown to be non-discriminatory in its effect. It must, also, be economically justiﬁed. The overall ﬁgures for occurrence

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in England have been stated to be 28–60 conceptions and 17 births of thalassaemics each year and 133–238 conceptions and 160 births with sickle cell disease but, clearly, these will not be distributed uniformly (Streetley, 2000). The White Paper expresses an initial intention to target areas of high prevalence for these diseases but the mode of selection is not made clear. In a way, selectivity of this type raises its own problem – what is the purpose of testing for the incidence of a condition if the areas of high prevalence are already known? It has been suggested that universal testing of neonates will be more cost-effective than selective screening if there are more than 5 cases of sickle cell disease or 15 sickle cell traits per 10,000 births, (Streetley, 2000) but this begs the question both as to the meaning of cost – is it the cost of testing or the cost of treating? – and of effective – what effect is sought? Is it the provision of better treatment facilities or is it the limitation of cases to treat? In this respect, it is to be noted that the Government’s proposals are in two parts – there is to be a neonatal screening, or testing, programme running in parallel with an antenatal programme involving pregnant women, primarily, as has been noted, in areas of ‘high prevalence’. Clearly, these have different objectives. The latter can be described as a form of societal genetic engineering based on elective termination of pregnancy. The purpose behind the former is more difﬁcult to identify. In common with many genetically controlled diseases, treatment of the haemoglobinopathies is symptomatic and does not have to be introduced early unless there is an already clear clinical indication; and, again, the genetic karyotype does not necessarily predict the severity of the disease. Many would question the value of ‘picking up’ 90% of affected infants – there is no certainty that improved medical surveillance will not have to be balanced against later, subtle forms of discrimination.9 And the shadow of racial discrimination, whether actual or perceived, overlies every aspect of this particular aspect of public health (Anionwu and Atkin, 2001). It is, thus, apparent, ﬁrst, that few of the individual proposals satisfy our criteria for acceptable genetic screening or testing and, second, that we ﬁnd it difﬁcult to discern a coherent policy behind them. We address this latter problem in the next section.

Genetic Screening – The General Part The controversy that surrounds both genetic screening and genetic testing of neonates and children is only part of the wider debate that is concerned with issues around discrimination, privacy and consent. As we have already intimated above, many concerns relate to the possibility of discrimination which might follow from knowledge of a person’s genetic status. The possible effects

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of this are vast and include not only adverse reaction in the public domain, such as employment and insurance, but also wide-ranging personal impacts on those found to have speciﬁc genetic conditions. As Robinson put it (1994, 726): Although knowledge about genes offers beneﬁts, these must be balanced against possible harms, like stigmatization, anxiety due to ignorance or knowledge of genetic status, and discrimination.

Considerable attention has been paid to discrimination in the academic and other literature. Wolf has suggested, however, that much of this debate is conducted in terms that are too narrow to be useful. The rubric of ‘genetic discrimination’, she says: . . . ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytical framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory. (Wolf, 1995, 345)

She concludes that the real concern in this area lies in an ‘. . . . eagerness to draw genetic conclusions, the search for supposedly deviant genes, and the conviction that such genes actually deserve disadvantage . . .’ (1995, 347). She believes that we would better understand what is actually happening when genetic knowledge is wielded against individuals or groups if we were to acknowledge the concept of ‘geneticism’, which connotes ‘an offensive and harmful practice, which remains harmful even when based on accurate rather than exaggerated understanding of the role of genes.’ (1995, 350) Wolf’s critique has been considered by Hellman, (2003, 77) who proposed that: Whether genetic discrimination wrongfully discriminates depends on whether such discrimination expresses that people with serious genetic conditions are less worthy of concern or respect. (2003, 113)

Whatever their disagreements as to terminology and effect, Wolf and Hellman, along with the majority of commentators in this area, do not dispute the very real possibility that discrimination, however conceptualised, will ﬂow from the availability of genetic information.10 The Government’s proposals to expand the screening/testing agenda must take serious account of the non-scientiﬁc, non-medical implications of so doing. Additionally, as has already been mentioned, the personal impact of discovering and/or holding genetic information on a particular individual or group of individuals should be taken into account. The Danish Council of Ethics, for example, pointed out that: Just as persons found through screening to have a particular gene or chromosome composition may happen to feel abnormal or outright ill. . . . so may others react to the persons involved by giving them a wide berth. The detection of certain

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genetic traits can thus form the basis for branding certain persons and groups among the population with the possibility of discrimination proper as a result. (1993, 60)

Several authoritative organisations have commented on the problems associated with enthusiasm for the search for genetic information which underpins the White Paper’s proposals, and have stressed the need for a careful approach. Thus, we have the Royal College of Physicians saying: The problems of gathering genetic information seem to fall into two main areas. The ﬁrst of these concerns the problem of whether a particular investigation should be undertaken at all. The second concerns the obstacles that may be encountered once a decision to investigate has been made. (1991, para. 3.1)

The Declaration of Inuyama cautions that: The central objective of genetic screening and diagnosis should always be to safeguard the welfare of the person tested: test results must always be protected against uncontested disclosure, conﬁdentiality must be ensured at all costs, and adequate counselling must be provided.11

and the European Convention on Human Rights and Biomedicine states that genetic tests which identify a genetic predisposition or carrier status may only be performed for the purposes of health or scientiﬁc research and require appropriate counselling.12 It is clear, therefore, that safeguards – such as the need for counselling and potential restrictions on the kinds of testing which are appropriate – are essential even when testing is proposed for those who are adult and, therefore, able to consent; this being in recognition of the fact that taking a genetic test is different from other medical interventions, not least in terms of its non-clinical consequences. Young children, however, and especially neonates, will be unable both to participate in counselling and, as has already been emphasised, to agree to or refuse screening or testing. Given that the welfare of the child is generally the paramount principle when decisions are made on their behalf, and given that there are prima facie reasons for believing that there are potentially negative consequences from obtaining genetic knowledge of them, it is no wonder that there is an even more profound debate in this particular area.

Genetic Testing of Children We have observed already that there is generally a distinction to be drawn between screening and testing, the former being population-based and the latter being directed towards the individual. At this stage, we turn our attention to genetic testing of children with particular reference to its relationship with children’s rights.

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In 1994, the Clinical Genetics Society issued a report entitled The Genetic Testing of Children.13 This divided testing into three main categories – genetic testing for childhood onset conditions, testing for adult onset conditions and testing for carrier status. Their conclusions on each differ, as might be expected given the kind of information being sought and its implications. In respect of testing for childhood onset conditions, the report recommended (as Recommendation 1): The predictive genetic testing of children is clearly appropriate where the onset of the conditions regularly occurs in childhood or there are useful medical interventions that can be offered (e.g. diet, medication, surveillance for complications).

However, the Society believed that there were sound reasons for not performing such tests in relation to adult- or late-onset conditions. The report said, in recommendation 2: . . . . the working party believes that predictive testing for adult-onset disorder should generally not be undertaken if the child is healthy and there are no medical interventions established as useful that can be offered in the event of a positive test result. . . . formal genetic testing should generally wait until the “children” request such tests for themselves, as autonomous adults. This respect for autonomy and conﬁdentiality would entail the deferral of testing until the individual is either adult, or is able to appreciate not only the genetic facts of the matter but also the emotional and social consequences of the various possible test results.

As to carrier status, the Society recommended (see Recommendation 4): The situation with regard to testing children for their carrier status for recessive disorders and balanced, familial chromosomal rearrangements is more complex. In general, the working party would make a presumption against testing children to determine their carrier status, where this would be of purely reproductive signiﬁcance to the child in the future.

In response, the Genetics Interest Group argues that: The report is overly preoccupied with psychological considerations, and the harm that knowledge of genetic disorders can cause within families. With little evidence, this seems to reﬂect more the fears of doctors that they will be held responsible for negative reactions, rather than the needs of families . . . Whilst we totally uphold the principle that families need counselling and support, we also believe that they should be given credit for being responsible and having coping capacities.14

These two reports highlight the tensions in this debate admirably. On the one hand, there are those who fear the detrimental potential of genetic information, particularly its emotional impact and most particularly where the knowledge is therapeutically valueless.15 Similar objections arise when obtaining information can justiﬁably be delayed until the individual concerned can consent or refuse testing on his or her own behalf. On the other hand, there are those who

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urge the possible beneﬁt of genetic knowledge to the family – and, arguably, through them, to the child. Indeed, the Genetics Interest Group claimed that: . . . . parents are responsible for the welfare of their children and at the end of the day most of them are better equipped to decide what is in the best interests of a particular child, and the family as a whole, than are outsiders.16

This may be so, and it is certainly a tenable proposition, but it could also be seen to miss the fundamental point. Most speciﬁcally, it seems to place the interests of the family above those of the individual child. It may well be true that families can both absorb and sensibly use information about the genetic status of a particular child. But it is also true that children have rights, the exercise of which should not be pre-empted precipitately. Certainly, the Genetics Interest Group appears to concede this in respect of testing for adult onset conditions (see para. 2.3): The argument that testing of the child takes away their right to make an informed decision as an adult overrides all other considerations. The low uptake in testing for Huntington’s disease shows that many people would prefer not to know that they will be affected at some time in the future.

Like many commentators, Ross (2002) agrees that a distinction must be drawn between testing for childhood and adult onset conditions, even while conceding that any testing may raise ‘concerns regarding the psychosocial implication of being an individual “at risk” ’ (2002, 226). It might, therefore, be anticipated that genetic tests could be neatly divided into two groups from the perspective of children’s rights. Those which provide information which is therapeutically valid, and the discovery of which at an early stage is, therefore, beneﬁcial, can be seen as being no different from other clinical diagnostic procedures. By contrast, those which threaten the child’s well-being – whether hypothetically or in reality – seem clearly to be disadvantageous, potentially rights-reducing and, correspondingly, impermissible. But even such an apparently simple assertion of the shape of children’s rights is not universally approved. Robertson and Savulescu (2001), for example, debate the issue in different terms. First, in respect of predictive testing, they identify three arguments which might be used against such testing. Broadly, these involve: – Failure to respect future autonomy – Breach of conﬁdentiality – Harm to the child In respect of the ﬁrst, they suggest that it is incorrect to assume that childhood testing necessarily reduces future choice. Rather, they argue (2001, 39):

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The child who is not tested is denied an option of growing up and adapting to the knowledge of their genetic status during their formative years. Thus the choice is not between two courses of action, one of which simply has more choice for the later adult, but between two mutually exclusive futures . . .

It is unclear why a future that includes knowledge of information which may have been rejected had the choice been available is the preferable option. They also maintain that the conﬁdentiality issue is relatively insigniﬁcant, since families are already routinely in possession of sensitive information about other family members. Finally, on the question of harm, the authors conclude that there is a paucity of evidence suggesting that children are indeed harmed by predictive testing. Evidence on the point is, however, as yet equivocal, and merely to state that harm might not accrue is insufﬁcient justiﬁcation for running the risk that it may. Certainly, there is some evidence (albeit anecdotal) that people fear the collection of genetic information and the uses to which it may be put. For example, in a poll conducted for Time magazine in 1994, those interviewed were equally divided on whether or not they would want to be tested to discover what conditions they may suffer from in the future. The British Medical Association also notes (at 103) that: Raised levels of anxiety, usually transient, have been reported in all forms of screening programmes including cervical, breast, cancer, and general health screening as well as genetic screening. For some people, simply receiving an invitation to participate in screening causes anxiety and some people have been found to be more anxious after screening than before regardless of the result.

Given such ambivalence, we wonder if what evidence there is of perceived harm to adults should be extrapolated to children. Moreover, it must be asked whether the risk of harm should be discounted when any alleged beneﬁts for children are suspect, even if some beneﬁts may accrue to the rest of the family. Moreover, the child’s situation is complicated by the additional dilemmas surrounding secondary disclosure. The subject’s parents will have agonised over the decision to allow their child to be tested. In time, however, they will have to decide whether to pass on the information they have to their adolescent or adult offspring and, in the nature of things, this decision must be taken irrespective of the wishes of the person most concerned. Thus, not only is the pseudo-autonomy of the neonate invaded but so also is the actual autonomy of the mature minor; at the same time, the chance of harm arises twice following neonatal testing but only once in the case of an adult. This takes on added signiﬁcance when one raises the further issue of privacy. Although in the United Kingdom this concept has generally been subsumed by the notion of conﬁdentiality, the Human Rights Act 1998 ﬁrmly introduces the concept of private family life into the UK’s domestic arena.17 Although this

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right could be interpreted as providing support for the concept of family rather than individual autonomy or privacy interests, the only evidence to support such an interpretation stems, indirectly, from a case in the Republic of Ireland18 where the family is protected by the Irish Constitution as the ‘natural, primary and fundamental unit group in society’.19 Here, the Supreme Court of Ireland upheld the rights of the parents to refuse, for no obvious reason, a heel-prick test on a child for the PKU gene. The decision was, however, based on Irish constitutional law and the European Convention was not considered.20 Gostin, writing from the US – a country in which privacy rights are much better developed – has noted the capacity of modern technology to establish a ‘comprehensive genetic information system’.21 Indeed, this is precisely what is apparently envisaged by the UK Government in mooting the possibility of genetic proﬁling. Para 3.36 of the White Paper refers, with little or no reservation, to the possibility of producing a comprehensive map of children’s key genetic markers ‘or even their entire genome’. While no-one could doubt the entirely admirable intention to apply this to ‘lifetime prevention and treatment regimes’, one is, at the same time, reminded of the furore that surrounded the suggestion that identity cards should be introduced. As Gostin somewhat forbiddingly expressed it: While this technology can markedly facilitate research, screening, and treatment of genetic conditions, it may also permit a signiﬁcant reduction in privacy through its capacity to store and decipher unimaginable quantities of highly sensitive data. (Gostin, 1995)

Yet such sophisticated systems would need to be at the heart of genetic proﬁling – otherwise, the expressed aims of the project could not be met. Threats to privacy may outweigh the potential beneﬁts of genetic proﬁling or testing, particularly in the very young, because no system of storage or manipulation of electronic or other data is failsafe. Moreover, due to its indiscriminate nature, not everything that appears on a proﬁle may be there for the subject’s beneﬁt. It is easy, indeed ‘trendy’, to decry the slippery slope and its warning notices. The fact remains, however, that, if a test can be done, it will be done and there is no certainty that the risk/beneﬁt analysis of each new advance will be the same simply because each is classiﬁed under the hallowed rubric of a ‘genetic test’.22 Finally, we must revert to the question of consent. It is axiomatic that neonates cannot offer a decision on whether or not to accept genetic testing. This, as we have suggested, is less of a problem when the test has a predictable and effective therapy. Parents (or other legal guardians) are permitted by law to make decisions regarding the medical care of their children, both at common law and under statute. However, the right to provide a consent in these circumstances is bounded by the need for the decision to be in the child’s best

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interests. This is a notoriously slippery test, and in the case of neonates has been used in ways which on occasion seem to be mutually contradictory – one is, for example, particularly reminded in the present context of the notorious case of R v. Arthur,23 in which the parents of an apparently otherwise healthy Down’s syndrome child simply did not wish him to survive and also of the numerous Jehovah’s Witness cases where parents have imposed their religious views on sick children for what they believed to be their own good. It is, in fact, clear that some parental decisions may – as in the Irish case referred to above – be less than self-evidently in the best interests of the child, unless these interests are seen as being served by reference to the interests of the parents and/or other family members. The arguments of the Genetics Interest Group imply that the interests of the family are intimately linked with those of the child, and this may well be so in some cases. However, given the nature of genetic information and the uses to which it may be put, it is not obvious that the discovery of information about one child can be justiﬁed on the basis of its beneﬁts to other family members. This problem might be resolved were genetic information to become value-neutral, but there are few – if any – who would realistically envisage this scenario actually occurring. Health information as a whole is seldom value-free; it is even less likely to be so regarded within the complex and predictive ﬁeld of genetic testing.

Conclusion As we have suggested, the proposals in the White Paper can be subjected to critique from three distinct perspectives. The ﬁrst challenges the basis on which the speciﬁc additional testing can be justiﬁed. The second demands a more in depth consideration of the merits of testing as a whole. The third relates to the implications of screening for genetic disease, perhaps particularly at the prenatal stage. Moreover, the importance of the protection of the human rights of the young and vulnerable must not be underestimated. Many genetic predictions are suspect even from the scientiﬁc viewpoint. Hubbard and Wald, for example, have cautioned that: Genetic predictions, whether they involve testing or screening, are based on the assumption that there is a relatively straightforward relationship between genes and traits. However, genetic conditions involve a largely unpredictable interplay of many factors and processes.24

If so, then there are additional reasons why we should question the foundations on which the presumption of beneﬁt to be derived from some kinds of postnatal genetic testing – and, perhaps, speciﬁcally genetic proﬁling – are based. Early detection of disease is generally regarded as a ‘good thing’, but this is

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usually only so when successful therapy or the alleviation of symptoms is real possibility. We have already suggested that – even in the cases speciﬁcally proposed in the White Paper – this is by no means certain. The negative consequences of obtaining the information may far outweigh any beneﬁts achieved. Secondly, we have expressed concern as to the link between neonatal and ante-natal screening and testing. While the former may have at its root the treatment of predicted conditions, the latter seems more likely to have – at least in the current clinical climate – the aim of terminating affected pregnancies. This may or may not be objectionable; there is no intention to debate this in this paper, but it must be transparently and openly addressed in the public domain. Simply presenting genetic inquiries as just another part of medicine’s capacities is insufﬁcient in these circumstances, and women (and their partners) must be adequately informed of the possible outcomes of routine pregnancy screening in a way that, to date, we argue, they have not been.25 We believe also that the proposals in the White Paper should be scrutinised carefully from the point of view of the general impression they give. It is imperative that they should not be interpreted as an encouragement to selective elimination of the disabled; but this remains a real possibility in the absence of explanation and debate. Nor is neonatal testing for the speciﬁed conditions an unequivocally ‘good’ process. Not only does there appear to be some confusion surrounding the rationale for selection of these conditions, there are also some reasons to believe that subtle discriminatory consequences may follow. It must, therefore, be conceded that neither screening nor testing are ‘simply a neutral technique and a private issue; [they have] signiﬁcant social consequences.’26 Moreover, as the British Medical Association (1998, 101) has pointed out, the technical ability to screen is not sufﬁcient justiﬁcation for doing so. Thirdly, although screening of pregnancies is widely accepted in the United Kingdom and elsewhere, the White Paper’s endorsement of it – with no apparent justiﬁcation – arguably side-steps an important opportunity to re-evaluate its underpinning rationale and bring it ﬁrmly into the public arena. Although the subjects of such testing (the embryo or foetus) do not hold legal rights, it is generally conceded that they are worthy of respect. The question must be asked, and answered, as to whether or not this respect is adequately satisﬁed by a steady growth of screening designed in large part, we would argue, to prevent live birth. Our main concern, however, focuses on the rights of children – rights to which the mere fact of birth entitles them. These rights are not conﬁned to the right to therapy; they also relate to the child’s role in his/her family and community. Despite Robertson and Savulescu’s conclusions, there is reason for

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concern about the possible effects on children’s rights of intrusive, non-therapeutic interventions, which, for example, would become reality were genetic proﬁling at birth to become routine. Whatever else it may be, it cannot be voluntary, and this – coupled with the legitimate and plausible fears of discrimination – is a signiﬁcant reason for caution. Our inheritance and our future may well be intimately and irrevocably linked to the so-called genetics revolution, but for future generations, their rights should not be compromised by our technological capacities or our interests in scientiﬁc inquiry. Commitment to intergenerational justice27 requires that we do not compromise the rights of future children, and – as we have argued – these rights are wider than the purely medical. Sadly, the assumptions behind the White Paper’s recommendations seem to be deeply in the thrall of scientiﬁc ‘progress’, and are less than adequately concerned with the consequential issue of children’s rights.

Notes That is, of course, provided foetuses are not included among children. Abortion Act 1967, s.1(1)(d). 3 It is signiﬁcant that the two tests which are currently offered to a neonate – for PKU and hypothyroidism (which is only rarely a genetically controlled disease) – are for conditions that can be treated (using the word in a broad sense) and which, moreover, must be treated early. Thus, there can be no question as to the best interests of the child and the tests have been accepted without demur. 4 (2003) Para. 3.35 raises this problem in particular relation to multifactorial genetic disease. 5 For a good analysis of the already extensive American experience, see D.E. Hoffmann and E.A. Wulfsberg (1995). 6 The overall incidence of Down’s syndrome at birth is of the order 1/650 to 1/700 with a well-known association with maternal age – the incidence is some 1/30 by the age of 45. We are not here concerned with the economics of universal testing. 7 Deafness and Genetics Forum UK, (accessed on 30/06/04). It is to be noted that ante-natal testing for genetic deafness is not currently undertaken. 8 In practice, a-thalassaemia is a relatively uncommon problem in the population as a whole because it causes death in utero or in early infancy in the homozygous state and is surprisingly asymptomatic in the heterozygote. 9 For a useful overview, see G.T. Laurie (1999(a)). 10 Although not everyone would agree; Maddox, for example, says ‘The reality of the use of a detailed knowledge of the human genome in discrimination between people is. . . . almost certainly more distant than the fear.’ 11 Declaration of Inuyama (Council for International Organizations of Medical Sciences, 17–22 July 1990) Human Genome Mapping, Genetic Screening and Gene Therapy, Article IV. 12 European Convention on Human Rights and Biomedicine (Council of Europe Convention for the Protection of Human Rights and Dignity of the Human being with 1 2

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regard to the Application of Biology and Medicine) 164, European Treaty Series, Oviedo, 1997, Article 12. 13 A summary of its recommendations can be obtained at (accessed on 27/06/04). 14 Response to the Clinical Genetics Society Report “The Genetic Testing of Children” (1995), available at (accessed 27/06/04). 15 This aspect of the debate is well argued by G.T. Laurie (1999)(6). 16 N. 14 above, para. 2.1, p. 4. 17 See European Convention on Human Rights Article 8. 18 North Western Health Board v W(H) [2001] IESC 70. 19 Constitution of the Republic of Ireland, Articles 41 and 42. This case is analysed in depth by G. Laurie (2002). 20 Laurie suggests that Article 8 would not be applied in such a case due to the derogation permitted under Article 8(2) ‘for the protection of the rights and freedoms of others’ (2002, 138). 21 L.O. Gostin (1995, 324). 22 For the importance of a selective approach, see A. Barnicoat (1997). 23 (1981) 12 BMLR 1. 24 R. Hubbard and E. Wald (1993, 36). 25 P.J. Edwards and D.M.B. Hall (1992). 26 J. Black (1998, 45). 27 Declaration on the Responsibilities of the Present Generation Toward Future Generations, UNESCO, Paris 1997. Article 1 of this Declaration reads as follows: ‘The present generations have the responsibility of ensuring that the needs and interests of future generations are fully safeguarded’.

References Anionwu, E.N. and Atkins, K. (2001) The Politics of Sickle Cell and Thalassaemia, Open University Press. Barnicoat, A. (1997) ‘Screening for fragile X syndrome: a model for genetic disorders?’ 315 British Medical Journal 1174. British Medical Association (1998) Human Genetics: Choice and Responsibility. Oxford University Press. Danish Council (1993) Ethics and Mapping the Human Genome. Copehagen. Edwards, P.J. and Hall. D.M.B. (1992), ‘Screening, ethics and the law’ 305 British Medical Journal 267. Gostin, L.O. (1995) ‘Genetic privacy’ 23 Journal of Law, Medicine and Ethics 320. Hellman, D. (2003) ‘What Makes Genetic Discrimination Exceptional?’ 29 American Journal of Law and Medicine 77. Hoffmann, D.E. and Wulfsberg E.A. (1995) ‘Testing children for genetic predispositions: Is it in their best interests?’ 23 Journal of Law, Medicine & Ethics 331. Hubbard, R. and Wald, E. (1993) Exploding the Gene Myth. Boston Beacon Press. Laurie, G. (1999 (a)) ‘Obligations arising from genetic information – negligence and the protection of family interests’ (1999) 11 CFLQ 109. ——— (1999 (b)) ‘In defence of ignorance: Genetic information and the right not to know’ 6 European Journal of Health Law 119.

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——— (2002) ‘Better to hesitate at the threshold of compulsion: PKU testing and the concept of family autonomy in Eire’ 28 Journal of Medical Ethics 136. Maddox, J. (1991) ‘The case for the human genome’ 352 Nature 11. Mueller, R.F. and Young, J.D. (1995) Emery’s Elements of Medical Genetics (9th edition, 1995), Chapter 22. Robertson, J. and Savulescu, J. (2001) ‘Is there a case in favour of predictive genetic testing in young children?’ 15 Bioethics 26. Robinson, A. (1994) ‘The Ethics of Gene Research’ 150 Canadian Medical Association, J.721. Ross, L.F. (2002) ‘Predictive Genetic Testing for Conditions that present in Childhood’ 12 Kennedy Institute of Ethics Journal 225. Royal College of Physicians (1991) Ethical Issues in Clinical Genetics. Streetley, A. (2000) ‘A national policy for sickle cell disease and thalassaemia major for the United Kingdon’ 320 British Medical Journal 1353. White Paper (2003) Our Inheritance, Our Future Cm 5791 London, HMSO. Whittaker, L.A. (1992) ‘The implications of the human genome project for family practice’ 35 Journal of Family Practice 294. Wolf, S. (1995) ‘Beyond “genetic dicrimination”: Toward the broader harm of geneticism’ 23 Journal of Law, Medicine and Ethics 345.

Predictive Genetic Testing in Children and Respect for Autonomy PHILLIPA MALPAS Department of Philosophy, University of Auckland

Introduction Predictive genetic testing of asymptomatic children for diseases that will not develop until adulthood and for which no cure or medical beneﬁt is available is not recommended by international genetic society guidelines (Council on Ethical and Judicial Affairs, 1995), (Human Genetics Services Association, 2003), (Clarke et al., 1994), (World Health Organisation, 1997), (Huntington’s Disease Society of America, 1994), (National Advisory on Health and Disability, 2003), (American Academy of Pediatrics, 2001), (National Society of Genetic Counselors, 2003). This is for a number of important reasons, one of which is that children have a right to autonomy, and “testing in childhood removes the possibility of that individual making an autonomous decision as an adult” (Human Genetics Services Association, 2003). Such concerns are also reﬂected in the report of a working party of the Clinical Genetics Society (UK) which claims that such testing of children should not generally be undertaken: “We would generally advise against such testing, unless there are clear cut and unusual arguments in favour. Formal genetic testing should generally wait until the ‘children’ request such tests for themselves, as autonomous adults. This respect for autonomy and conﬁdentiality would entail the deferral of testing until the individual is either adult, or is able to appreciate not only the genetic facts of the matter but also the emotional and social consequences of the various possible test results” (Clarke et al., 1994). This conclusion is also reached within much of the medical and bioethical literature (Bloch & Hayden, 1990), (Clarke & Flinter, 1996), (Wright, 1997), (Michie & Marteau, 1996). It is important to examine this prohibitive stance and the grounds given to defend it. This is for a number of reasons: “As genes for more common illnesses are identiﬁed, physicians will be under increased pressure from families to test children and adolescents for various disorders and predispositions” (Fanos, 1997). As the tests accurately to predict an individual’s disease risk become more reliable and cheaper to administer, it is possible parents will request them for their at-risk children. There is also a concern that such tests may one day be available over the counter (Burnside, 1997). At the present time predictive genetic testing of adults is preceded by extensive counselling and support. Michael Freeman (Ed.), Children’s Health and Children’s Rights, 297–309. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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Were testing to become available parents may organise to have their children tested without either party being fully aware of the ramiﬁcations of testing. We should note that such guidelines do not clarify what respecting the future autonomy of children involves, but simply assume that predictive genetic testing will breach it. Whilst I agree that respecting the future autonomy of children is imperative, we should not assume that a prohibition on testing will so obviously preserve their future autonomy by offering them more choices. Not testing at-risk children for adult onset diseases may in fact limit options available to them, namely of having known the test result since childhood (Michie, 1996) and successfully incorporating that knowledge into one’s self identity “during their formative years” (Robertson & Savulescu, 2001). In this discussion I consider whether predictive genetic testing of children for adult onset diseases may in fact enable and facilitate their developing autonomy. That is, testing may provide clear and deﬁned beneﬁts to the child. I should make it clear that my focus is on single gene mutation disorders that have almost total penetrance and are currently untreatable and unpreventable. This means that if you have the genetic mutation you will go on to develop the disease unless you die of something else beforehand. Such conditions are different from those that are multifactorial in origin; that is, the development of these disorders is dependent on both genetic and non-genetic factors.

Discussion Respect for autonomy is a cornerstone of contemporary bioethics (Beauchamp & Childress, 2001). The ways in which we respect the autonomous choices of others says much about how we value them as individuals and the importance we attach to their lives and our own. As a value (in medical ethics) autonomy, “is often held to be more important even than the curing of an illness when we allow persons the right to refuse treatment” (May, 1998). Seeking informed consent, respecting the choices of others and maintaining patient conﬁdentiality are all ways in which we respect the autonomy of others and the autonomous choices that they make. We also value raising children to become autonomous, self conﬁdent, responsible citizens. Such respect shows how important the concept of autonomy is in determining how we should act towards those in the moral community. Central to my understanding of autonomy, and the way in which I intend it to be understood in the context of this discussion is an emphasis on the autonomous choices an individual makes rather than the individuals themselves. I may be said to be an autonomous person because I am a mentally competent adult, live my own life according to my dictates, exercise reason and deliberate about the range of options available to me, however I am not mak-

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ing an autonomous choice when I pursue a course of action without understanding or taking into consideration the relevant implications of my decisions. For instance, as an autonomous person, I do not make an autonomous choice about my future when, in a drunken moment, I decide to insult my employer. In perhaps a more contentious example, I may be qualiﬁed to act autonomously when I consent to major surgery; however I do not exercise my autonomous choice when, out of fear, I choose to ignore the surgeon’s advice to read the consent form. I may have consented to surgery, but my consent is not given autonomously, and thus it is no consent at all. Understood in this way, making an autonomous choice is demanding. It requires that not only do individuals have access to information, but that they reﬂect on their course of action clearly taking into account the consequences and implications that may result. Ignoring or refusing to heed important information, especially about one’s health may go on to compromise or even forfeit one’s ability to make autonomous choices later. Children, especially young children, are often said to lack autonomy, or rather lack the ability to make informed decisions about how to govern their lives. They generally cannot anticipate the consequences that may arise from their actions and are unable to think long-term about their own futures and the impact decisions made now may have on them and others. Parents are normally those entrusted with the authority to make decisions for their children; decisions that are to be made in the best interests of the child. However it would be misleading to assume that children, even very young children, cannot make any autonomous choices in their lives. Given information relevant to their age and understanding children can make reasonable decisions for themselves. For instance, what they would like to wear, what they will eat for dinner or who to play with after school. As parents, we encourage our children to make choices in this way because helping them facilitates the development of their autonomy by enabling them in their ability to choose. Children “do not emerge from a cocoon at age 18 with full blown decision-making capacity; rather their abilities to make good choices must be developed over time, a process that requires patience” (Wright, 1997). Such a process facilitates the child learning to take responsibility for their actions, nurtures their self-conﬁdence and determination, encourages them to consider how the consequences of their actions will impact upon others and educates them about the choices they will need to make as they prepare to direct their own lives. This necessitates providing children with information and knowledge. Generally however young children are unable to make autonomous choices when faced with complicated and often conﬂicting choices, especially in the area of health when the range of options available is often neither straightforward nor obvious. As young children need to be protected from their own actions as well as those of others, it is important to consider what can and can not be done to children because in the context of

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predictive genetic testing, young children cannot give an informed view on whether they should be tested for an adult onset disorder (Wright, 1997). Adolescents are a different matter. When they request testing because they are aware of a disease risk in the family, are concerned for their futures and want to know more about the disease, they ought to be encouraged to discuss their concerns with family members and genetic counsellors (Clarke et al., 1994). Such questioning and deliberation clearly indicates an exercising of their autonomous capacities. The thirteen year old who knows a disorder exists within the family, who seeks information and requests that she be tested is exercising her autonomy and so her decision should be taken seriously and not be rejected simply because she is still legally considered a child. If we are sincere about respecting the developing autonomy of children, as I believe we are, then a child’s autonomous choices ought to be listened to in so far as they are accorded the same respect shown to an adult’s autonomous decision. However, having noted this point I will limit my discussion in this paper to the more contentious circumstance of testing young children when they have not requested it for themselves. Testing therefore comes from the child’s parents or caregivers.1

The issue The following hypothetical example makes clear the central issues that dominate this discussion: Jon and Sue have 2 young children, aged 5 and 8 years old. Jon’s father was diagnosed with Huntington’s disease HD – a neurodegenerative disorder characterised by personality change and cognitive decline (Myers, 2004) – three years ago. Jon knows that he has a 50% chance of carrying the HD gene and that his children are also at risk. After deliberating, he decides to be tested and the results show him to be positive for the disease; hence his two children have a 50% risk of carrying the HD gene. Following a period of adjustment and discussion both parents request that their children be tested. This is for several reasons: Jon and Sue’s primary intention is that testing the children will give them all information which will help shape the children’s lives in an empowering, pragmatic way. If they test positive they will grow up understanding the disease and the part it will play in their lives, if they test negative they will grow up knowing it will not affect them in the way it will their father and grandfather. Regardless of the test outcome, both parents feel the children should grow up knowing what the future will hold for them from an early age and be able to make plans that incorporate a realistic future. Jon claims he wishes he had always known so that he grew up understanding the disease and had more time to prepare for his own future. Both parents claim that they have raised their children in an environment in which honesty and openness are central. They state that the disease is only one part of their lives. As the risk to the children is 50%, there is just as much likelihood that they

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will be free of the HD gene. Were the children adopted, Sue argues, they would have been told of their adoption from a young age. Jon asks, ‘What harms may result if the children are not tested? When they are older will they accuse us of secrecy because we did not have them tested earlier? Does not having the children tested imply that the disease is shameful and ought to be kept hidden?’ Should such a request be granted?

Clearly at the ages of 5 and 8 years, the two children are unable to make an informed decision so it is important to look at the two claims being presented by the parents with respect to testing: 1. First it is argued that testing will beneﬁt the children’s developing autonomy because they will grow up in a supportive, caring environment knowing speciﬁc information that will help shape their futures in a realistic way. 2. The second claim states that openness and honesty are central to how the family live. It is implied that openness in the area of genetic testing will facilitate the children’s developing autonomy. Sue comments that had the children been adopted they would have been told such information. It is also hinted that not testing the children implies certain information should be kept a secret, and thus is shameful. Claiming that testing will beneﬁt the children’s developing autonomy by giving them important information appears reasonable. Part of understanding our place in the family and the world is learning about who we are, how we are connected to others and where we came from (our ‘roots’). One consequence of this understanding is learning how to make decisions and take responsibility for our actions and ultimately our lives. We can only make informed decisions about what we want for ourselves and others where we have access to information and can make choices. Thus we prepare children for life by educating them in certain ways, exposing them to a variety of experiences that help shape their futures and guide their social and moral development. We do not bring children up in a social, moral or religious vacuum until they are old enough to decide for themselves how to live: hence we do not say to children; ‘Just in case you may not want to know about Christianity, Islam or Buddhism when you are an adult, we won’t inform you about them now’. As children begin to develop their own identities they will need to incorporate information into their lives that will shape and inﬂuence how they see themselves and others. Part of nurturing a child’s developing independence and capacity for autonomous choice is allowing them the opportunities to make choices even when we may disagree with their decisions and helping them to accept the consequences of their actions. This marks the beginning of them becoming competent and developing an ability to reﬂect critically on what they need and want (Haworth, 1986).

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If children are tested young and found to be positive for a disease that is present in their family, such knowledge becomes part of who they are and who they will become. Learning that one has a disease which probably will not manifest itself until one is much older may give the child time to become accustomed to such information and to grow up without fear of the disorder. Such knowledge may beneﬁt the child as they “may view the disease state as being normal and may even develop positive attitudes of identiﬁcation with the affected family member” (ASHG/ACMG, American Society of Human Genetics Board of Directors, & Directors, 1995). The child who is tested and found not to be at risk grows up knowing that whilst the disease resides within the family, she is not at risk of developing it. Thus her future plans and goals will be made in such knowledge. This is important because “A fundamentally important fact about ourselves is how long we will live and how robust our health will be. To take the extreme case, it might make a great difference to our actions, if we learnt we were to live one more day or 40 more years” (Robertson & Savulescu, 2001). Sue links the disclosure of information about adoption to that of information derived from predictive testing; were the children adopted, she argues, they would have grown up from a young age knowing such information. She implies that as the children are at risk for Huntington’s disease they ought to be tested so that they grow up knowing such information in the same way that children are generally told that they are adopted. Telling adopted children the truth about where they came from is important for their developing self identity during their formative years. Such disclosure respects the “need of the offspring to know their ‘roots’” (Basu, 2004). When individuals ﬁnd out that they were adopted as adults many ﬁnd it a “crisis of the whole person – mind, body and soul” (Schooler & Norris, 2002). They may also feel a sense of betrayal and anguish over the “past mismanagement of the most intimate detail of one’s life – one’s personal identity” (Ibid.). Where adoption information is withheld from a child, the result may be the “erosion of the child’s trust, loyalty and attachment to the adoptive family” (Keefer & Schooler, 2000). Children who are told the truth about their adoption grow up knowing that being adopted is neither shameful nor should it be a secret that stays hidden. Relationships between parents and their adoptive children fare better when there is open and reliable communication (Hunter, Salter-Ling, & Glover, 2000; Snowden & Snowden, 1997). Is knowledge that one is adopted similar to knowledge that one has a disease which may not manifest itself until one is older? One response is to claim that knowledge of adoption is knowledge of a past event, whereas knowledge that one has a genetic disorder that will not develop until one is much older is an event that is yet to occur. Yet both kinds of information, disclosed at a young age, may assist in the

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development of a child’s identity and determination by presenting them with information that is crucial to how they will go on to live their lives. Growing up in the knowledge that one was adopted respects the child’s development towards autonomy because it recognises the importance of children knowing their biological heritage – their place in the family and the world – and the signiﬁcance this information has for the child. Recently the importance of knowing one’s genetic heritage was clearly expressed in the discussion surrounding reversing the anonymity of men and women who donate germinal material in IVF treatments. In 1984 an inquiry led by Baroness Warnock enshrined anonymity for donors of sperm. Today she requests a reversal of that position. Warnock and others2 now believe it is essential that children conceived in this way have access to information about their biological parents, including genetic details which could be crucial to their health. Children conceived through the use of donated sperm have a right to know the same information as those conceived naturally. “It’s absolutely deplorable for a child not to know what other children know” (BBC, 2002). In January 2004, after widespread public consultation, the UK government announced that individuals who donate germinal material are to lose their right to anonymity. If it is important that children are told of their adoption or their biological origins because such disclosure is important in the formation of their self identity and developing autonomy, can the same be said for testing currently healthy children for adult onset diseases? It may help to clarify this question by giving more attention to the adoption issue. Suppose that a child had been adopted because her mentally ill mother’s pregnancy had been the result of rape. Neither the mother nor her immediate family had been able, because of the brutal and ongoing circumstances, to raise the child. Would the adoptive parents think it beneﬁcial to tell the young child the details surrounding her conception? I doubt they would. Telling a young child that her existence began in such a violent way may harm her because she may grow up feeling a sense of worthlessness and anger that the circumstances surrounding her conception resulted in her biological mother being unable to raise her. Also at an early age, the details may be too complicated for a child to understand. For instance, if the child’s birth mother was a sex worker, telling her about her adoption history means also telling her about human sexuality. So while it is still important to tell the child the truth (if say for instance, she began to question her appearance in relation to her other siblings, or questioned what it meant when her friend told her she was adopted), one may avoid telling her speciﬁc details until she is old enough to question and understand the implications and consequences of such information. There is certain information that will not shape children’s lives in an empowering manner. Whilst we educate children about being safe we do not

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tell them, in detail, the horror stories of children who have been abducted and murdered by family members and strangers; such information will only serve to frighten and harm them. It is not in their best interests to know such detail at this young stage in their lives. It is important though to assist children to develop their capacity for autonomous choice, thus we give them information that will promote their autonomous abilities. We tell children about how to keep safe, where to go if they are feeling frightened or are being bullied, and whom to contact if they are concerned or worried. It is important to restate this point. Information that intimately concerns a child and will go to have a signiﬁcant impact on their future lives must be conveyed to them in an age-appropriate way so that the child grows up with an understanding that supports her in her decision making. In this way one could argue that a child could be raised knowing that she carried the gene responsible for a particular disease (where she had tested positive), or conversely that she had tested negative by conveying such knowledge in a way that was appropriate to her understanding, without the need to tell her speciﬁc details at an early age. As Robertson and Savulescu point out, human beings are psychologically disposed to discount harms that occur in the distant future. The further away they are the less harmful they appear. Thus one may claim that the sooner children learn about such future harms, “the less psychologically damaging it would be” (Robertson & Savulescu, 2001). Being honest and open with children about their adoption or their biological origins is but one example of how important it is to tell children information that is crucial to their lives. Within the paediatric oncology literature there is evidence that where children are told they have cancer relatively early in their treatment they are better able to cope than children who indirectly learn about their cancer later (Bearson, 1991; Koocher, 1986; Slavin, O’Malley, Koocher, & Foster, 1981). “Learning the diagnosis at a later age was a much different experience. It appears to have been much more difﬁcult to integrate the information. Many children felt betrayed and shocked and feared the possible consequences of cancer even when reassurance was provided” (Bearson, 1991). Claﬂin and Barbarin found that parents who limited disclosure to their young children (about their cancer diagnosis) in order to protect them from “emotional arousal” failed. “The lack of disclosure may communicate the unintended message that the disease is a morbid, frightening secret to be worried about and that it is so toxic and dangerous it cannot be discussed openly” (Claﬂin & Barbarin, 1991). Openness and honesty do not imply that children must be told every detail about their disorder, but rather that they grow up understanding what the future will hold for them in a way they can make sense of. Thus as they mature and begin to make decisions for themselves they will do so in increasingly full

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knowledge of what the future may hold. This is part of what it means to be informed and to take charge of one’s own life (Cohen, 1998). We cannot make autonomous choices about our lives when we do not have access to information that is pertinent to us, and as children develop their autonomous capabilities as they mature, they must have access to important information that will inﬂuence their choices. Testing children at risk for adult onset diseases gives the child important information and offers them “different choices not fewer choices” (Robertson & Savulescu, 2001).

Objections There are several ways someone may object to the discussion just presented: My argument has claimed that testing young at-risk children for certain untreatable and unpreventable diseases may facilitate their developing autonomy. This presupposes a certain kind of family environment; one in which the interests of the child are of paramount importance, and where the development of their autonomy is recognised and promoted. Some parents however may claim to promote the child’s developing autonomy but really they request testing to relieve their own uncertainty and anxiety or to assist them in the spacing of subsequent children. In response, this criticism is not an objection to the truth of the claim that predictive genetic testing would be justiﬁable in circumstances where the knowledge from a test would facilitate the child’s developing autonomy, but rather to its applicability in practice. How could we be sure that parents will use the knowledge in such a way as to enable the child’s developing autonomy? I do not advocate testing young children without parents ﬁrst undertaking appropriate counselling and support in order to establish that the interests of the child are (known to be) of primary importance. Hence those health professionals responsible for supporting the family prior to the child being considered for testing would determine the appropriateness of testing in each context. The strongest objection to testing children is the one stated by the many international guidelines: if we test young children before they are able to make an autonomous choice to be tested, we violate their future autonomous choice in deciding not to be tested. In other words, if we test them now they can never make a choice not to know. In reply, in fact parents make many decisions for their children now that will result in them being unable to decide not to know certain knowledge in the future. In New Zealand many children are tested for their academic intelligence when they begin high school to determine what stream (class) they should be placed into. Generally schools and parents welcome such testing on the grounds that knowing a child’s academic abilities facilitates the child’s learning

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by placing them in a suitable learning academic environment. Surely one of the reasons why it is considered important to determine who the under and over achieving students may be is that we recognise that giving them extra curricular support and encouragement nurtures their abilities. Whilst we acknowledge that children who are tested will never be able to choose not to know certain knowledge about their academic abilities we recognise that testing promotes their learning and fosters their development as future autonomous individuals. The beneﬁts to the child from being tested outweigh the restrictions they will face later as autonomous individuals. As I discussed earlier, in many western countries at least, it is considered appropriate to tell children before the age of 18 that they are adopted. Even though telling a child they are adopted prevents their being able to make an autonomous choice not to know later we consider that telling them such information trumps their right not to know because it is vital for their developing self identity and autonomy. One may further object that testing children now for their academic abilities beneﬁts the child immediately for we can implement strategies to help children who are being left behind by their peers (individual, personalised tuition, extra-curricular activities), whereas testing children for diseases which will not manifest until they are adults will not beneﬁt them now because the progression of the disease cannot be halted or cured. Such an objection construes beneﬁts too narrowly. I have claimed in this paper that in fact testing some children for adult onset diseases may beneﬁt them now by imparting important information to them in an age-appropriate way that will assist them in maturing into individuals capable of autonomous choice. Finally one may argue that even where testing may provide young children with knowledge that will promote their autonomous capacity to begin to make informed choices about the direction of their lives, there are more important issues to consider than future (violations of ) autonomy. In other words, even if we are satisﬁed that testing young children for adult onset diseases will facilitate rather than foreclose their autonomy, it is not clear that we are still justiﬁed in testing them. It is important that we not overlook other consequences that may arise from testing. These include future discrimination in insurance, health care, educational opportunities and employment, psychological harms such as depression, altered family dynamics, ‘survivor’ guilt and breaches of conﬁdentiality. These are important considerations but have been beyond the scope of this discussion. The intention of this paper has been to consider how testing children for adult onset diseases may facilitate and promote the child’s developing autonomy rather than violate it.

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Conclusion The guidelines that recommend prohibiting predictive genetic testing of children for adult onset diseases claim that testing violates the child’s future capacity (as an adult) to make an autonomous decision not to know. I have argued that whilst testing at-risk children does prevent the adult (they will become) making a choice not to be tested, under certain circumstances, the beneﬁts to children’s developing autonomy should be considered a compelling reason to test them. In other words, the beneﬁts for autonomy’s development in terms of enabling the child to begin to make plans and decisions about their own future in the knowledge of such information, trumps the child’s future decision not to know. To say that telling children of their adoption violates their being able to make an autonomous decision not to know as an adult misses what is crucial about such information. Disclosing such information during a child’s formative years when their self identity is being shaped, assists them in understanding and learning about their place in the world; who they are connected to, what such knowledge will mean for their future and the plans they intend to make knowing what they do about themselves. If we refrain from testing children who are at risk of developing adult onset disorders we may in fact be teaching them that ignorance is a good way of life (Cohen, 1998). Ignorance is surely the antithesis of autonomy. When parents request that their young children be tested principally because they believe that testing will enable and promote the child’s self identity and developing autonomy, I claim serious consideration must be given to such a request. It respects not only the desire of the parent to do what they consider to be in the best interest of the child, but also the child as an entity whose capacity for autonomous choice is acknowledged as important.

Acknowledgements I would like to acknowledge the support and assistance of Professor Rosalind Hursthouse in the writing of this paper, and the many helpful comments received after presenting a shorter version of this paper at the 7th International World Congress of Bioethics in Sydney, 2004. This work was funded by the Auckland Medical Research Foundation, Senior Scholarship.

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Notes I will not address the case where prospective adoptive parents request that a child is tested prior to adoption. Testing would not be performed in this situation. Bloch and Hayden, 1990, pp. 2–3. 2 Dr Mohammed Taranissi, Director of the Assisted Reproduction and Gynecology Centre in London. Laura Spoelstra, Chairman of the National Gamete Donation Trust. Suzi Leather, Chairman of the HFEA. Marilyn Crawshaw, a spokeswoman for UK DonorLink. 1

References American Academy of Pediatrics. (2001). Ethical issues with genetic testing in pediatrics. Retrieved August 26, 2002, from . ASHG/ACMG, American Society of Human Genetics Board of Directors, & Directors, T. A. C. o. M. G. B. o. (1995). ASHG/ACMG Report. Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233–1241. Basu, S. (2004). Genetic privacy: resolving the conﬂict between the donor and child. Current Science, 86(19), 1363–1365. BBC. (2002). Call to end sperm donor anonymity. Retrieved August 2004, 2002, from . Bearson, D., J. (1991). “They never want to tell you”. Children talk about cancer. London: Harvard University Press. Beauchamp, T., & Childress, J. (2001). Principles of biomedical ethics (5th ed.). New York: Oxford University Press. Bloch, M., & Hayden, M. (1990). Opinion: Predictive testing for Huntington disease in childhood: challenges and implications. American Journal of Human Genetics, 46, 1–4. Burnside, J. (1997). Ethical quandaries in genetic testing. Retrieved July 2004, February 1997, from . Claﬂin, C., & Barbarin, O. (1991). Does “telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. Journal of Pediatric Psychology, 16(2), 169–191. Clarke, A., Fleming, D., Kerzin-Storrar, L., Middleton-Price, H., Montgomery, J., Payne, H., et al. (1994). The genetic testing of children. Report of a working party of the clinical genetics society. Clinical Genetics Society. Clarke, A., & Flinter, F. (1996). The genetic testing of children: a clinical perspective. In T. Marteau & M. Richards (Eds.), The troubled helix: social and psychological implications of the new human genetics. Cambridge: Cambridge University Press. Cohen, C. (1998). Wrestling with the future: should we test children for adult-onset genetic conditions? Kennedy Institute of Ethics Journal, 8(2), 111–130. Council on Ethical and Judicial Affairs. (1995). Report 4 – A-95 ‘Testing children for genetic status’. Retrieved August 30, 2004, from . Fanos, J. (1997). Developmental tasks of childhood and adolescence: implications for genetic testing. American Journal of Medical Genetics, 71, 22–28. Haworth, L. (1986). Autonomy. An essay in philosophical psychology and ethics. New Haven and London: Yale University Press.

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Human Genetics Services Association. (2003). Predictive testing in children and adolescents. Retrieved August 25, 2004, from . Hunter, M., Salter-Ling, N., & Glover, L. (2000). Donor insemination: Telling children about their origins. Child Psychology and Psychiatry Review, 5(4), 157–163. Huntington’s Disease Society of America. (1994). Guidelines for genetic testing for Huntington’s disease, from . Keefer, B., & Schooler, J.E. (2000). Telling the truth to your adopted or foster child. Making sense of the past. London: Bergin and Garvey. Koocher, G. (1986). Psychosocial issues during the acute treatment of pediatric cancer. Cancer, 58, 468–472. May, T. (1998). Autonomy, Authority and Moral Responsibility (Vol. 33). London: Kluwer Academic Publishers. Michie, S. (1996). Predictive genetic testing in children: paternalism or empiricism? In T. Marteau & M. Richards (Eds.), The troubled helix: social and psychological implications of the new genetics (pp. 177–183). Cambridge: Cambridge University Press. Michie, S., & Marteau, T. (1996). Predictive genetic testing in children: the need for psychological research. British Journal of Health Psychology, 1, 3–14. Myers, R. (2004). Huntington’s disease genetics. Journal of the American Society for Experimental NeuroTherapeutics, 1, 255–262. National Advisory on Health and Disability. (2003). Molecular genetic testing in New Zealand. National Health Committee. National Society of Genetic Counselors. (2003). Position statements: Prenatal and childhood testing for adult-onset disorders. Retrieved 28 January, 2004, 2004, from . Robertson, J., & Savulescu, J. (2001). Is there a case in favour of predictive genetic testing in young children? Bioethics, 15(1), 26–49. Schooler, J.E., & Norris, B.L. (2002). Journeys after adoption: Understanding lifelong issues. Bergin and Garvey. Slavin, L., O’Malley, J., Koocher, G., & Foster, D. (1981). Communication of the cancer diagnosis to pediatric patients: Impact on long-term adjustment. American Journal of Psychiatry, 139, 179–183. Snowden, R., & Snowden, E. (1997). Implications Counselling for Couples considering Donor Insemination. London: British Infertility Counselling Association BICA. World Health Organisation. (1997). Proposed international guidelines on ethical issues in medical genetics and genetic services. World Health Organisation. Wright, E.C. (1997). Genetic testing in children. The Journal of Medicine and Philosophy, 22, 233–251.

Deﬁning Parenthood BONNIE STEINBOCK Department of Philosophy, State University of New York at Albany

Introduction Advances in reproductive medicine require us to rethink concepts previously taken for granted, including the notion of parenthood. On the one hand, it has always been possible to distinguish between the biological aspect of being a parent, or reproduction, on the one hand, and the social component, or rearing, on the other. Adoption and fostering of children are nothing new, and neither are disputes over custody. On the other hand, assisted reproductive technology (ART) compounds the potential for complication. A child can have ﬁve different parents: the genetic father, who provides the sperm; the genetic mother, who provides the egg; a surrogate who is not genetically related to the child she carries and bears; and the intended rearing parents who have no biological connection to the child. Indeed, the notion of ‘genetic mother’ can be even further divided. Using a technique known as egg cell nuclear transfer, the nucleus containing most of the DNA can be taken from one woman and transplanted into an enucleated egg cell from another woman.1 The new egg cell would have the nuclear DNA from one woman, while its ooplasm, containing mitochondrial DNA, would come from another woman. The resulting child would thus have genetic material from two different women, and thus six contenders for the role of parent. Sometimes this multiplication of parents results in custody disputes, and courts have had to decide who are the ‘real’ parents.

Surrogate Motherhood Cases2 In the famous ‘Baby M’ case,3 biological parentage was not at issue. William Stern was the child’s biological father, and Mary Beth Whitehead her biological mother. Rather, the issue was whether signing a surrogacy agreement deprived Ms. Whitehead of the status of ‘mother’, even though she carried and gave birth to her own genetic child. In another well-known case, Johnson v. Calvert,4 the biology was more complicated because the surrogate, Anna Johnson, gestated an embryo created by the Calverts. Ms. Johnson was the Michael Freeman (Ed.), Children’s Health and Children’s Rights, 311–334. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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gestational mother, but Ms. Calvert was the genetic mother. The California Supreme Court did not rule that one sort of connection is stronger than the other as regards claims to custody. Rather, it held that when there are two mothers, the one who intended to ‘bring about the birth of a child that she intended to raise as her own – is the natural mother under California law’. However, the intended rearing parents might not have either a genetic or a gestational connection to the child. This was so in a widely reported California case, in re Buzzanca,5 in which the couple had used sperm donation, egg donation, and a surrogate in their attempt to have a child. The Buzzancas ended up in court because John Buzzanca divorced his wife before the child, Jaycee, was born and then refused to pay child support, arguing that the resulting child was not a child of the marriage. The trial court agreed with his biological interpretation and held that Jaycee Buzzanca had no legal parents. John Buzzanca did not owe child support because he was not the father. Luanne Buzzanca, who had cared for the child from birth, was a ‘temporary custodial person’, and would have to adopt her to become her legal mother. Commenting on the decision, columnist Ellen Goodman writes: Now, from all reports, the toddler is being lovingly cared for by that temporary custodial person she illegally calls ‘mommy’. But as the case goes to appeal, I am trying to imagine how a judge, who is supposed to act in the best interests of the child, could leave a child without any parent at all. How could the same judge rule that the man responsible for a child’s creation, had no responsibility for her support?

Common sense, Goodman suggests, tells us that ‘. . . John Buzzanca is as responsible for the existence of Jaycee as any man who ever created a child the lo-tech way. Perhaps more so, since he did it so intentionally’.6 If this is right – and I think it is – it suggests that being a parent is about more than reproduction in the narrow genetic sense. The California Appeals Court agreed. It overturned the decision, holding that the intent to parent made John and Luanne the lawful parents of Jaycee. The court wrote, ‘Let us get right to the point: Jaycee never would have been born had not Luanne and John both agreed to have a fertilized egg implanted in a surrogate’.7 It rejected John Buzzanca’s contention that he had no parental responsibility for the child by analogizing the case to one in which a woman is artiﬁcially inseminated. ‘If a husband who consents to artiﬁcial insemination [under California law] . . . is ‘treated in law’ as the father of the child by virtue of his consent, there is no reason the result should be any different in the case of a married couple who consent to in vitro fertilization by unknown donors and subsequent implantation into a woman who is, as a surrogate, willing to carry the embryo to term for them’.8 Luanne Buzzanca was given legal custody of Jaycee, while the matter of child support was remanded.

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Lesbian Mothers In a very recent case, the San Francisco Court of Appeals ruled that the genetic mother of twins born to her lesbian partner has no parental rights because she signed a waiver of parental rights at the time of donating her eggs.9 K.M. and E.G. began living together in March 1994 and registered as domestic partners in San Francisco in October 1994. Long before their relationship began, E.G. had been exploring ways to have a child on her own. She underwent 12 rounds of artiﬁcial insemination, but did not become pregnant. Attempts at IVF using E.G.’s eggs and donor sperm failed because E.G. was unable to produce enough eggs. At that point, E.G.’s fertility doctor suggested that she might like to try IVF using K.M.’s eggs. E.G. was reluctant to do so because the couple’s relationship was still new. Moreover, a mutual friend of theirs was then involved in a child custody dispute with her lesbian partner, something E.G. wanted to avoid. Eventually, however, E.G. overcame her misgivings, and asked K.M. to donate her eggs, provided that K.M. would be a ‘real donor’ and E.G. would be the only legal mother. The possibility of a future adoption by K.M. was discussed, but the women agreed that this should not happen for at least 5 years when the relationship was proven stable and permanent. The consent forms K.M. signed explicitly provide that the egg donor must waive any right and relinquish any claim to any offspring resulting from the donated eggs. After meeting with a psychological counselour, K.M. and E.G. discussed what they would disclose publicly about the parentage of a child formed from K.M.’s donated eggs. They agreed to tell the child eventually that K.M. was the genetic mother, but that E.G. would decide when. They also agreed not to tell other people about K.M.’s role and to reveal only that E.G. was the mother. In April 1995, K.M. underwent the egg retrieval procedure, her eggs were fertilized with sperm from an anonymous donor, and four of the resulting embryos were implanted in E.G.’s uterus. E.G. gave birth to twin girls on December 7, 1995. Soon afterward, E.G. asked K.M. to marry her and on Christmas Day the couple exchanged rings. For the next 5 years, they all lived as a family unit, with both women caring for and raising the girls. In 2000, K.M. became insistent that she wanted to adopt the girls, but E.G. had misgivings. They separated in March 2001, and E.G. ﬁled a notice of termination of the domestic partnership. They got back together in July, but in August 2001, E.G. moved to Massachusetts with the girls. In February 2002, K.M. ﬁled a new petition to establish a parental relationship. She also sought joint custody. In response, E.G. ﬁled a motion to quash and dismiss the petition on the ground that K.M. lacked standing to assert parentage. At trial, K.M. testiﬁed that she and E.G. had planned to have children together from the very beginning. She denied that there had been any

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agreement that E.G. would be the sole legal mother. She admitted signing the ovum donation consent form, but claimed that she had not understood the legal implications, and treated it as merely a matter of form necessary to proceed with the egg donation. She never intended to relinquish her parental rights, she alleged, and thought that the language of the donor form wouldn’t apply to her because she knew the recipient. The trial court did not buy K.M.’s story. It found that K.M. relinquished her claim to parentage when she knowingly, voluntarily, and intelligently signed the ovum donor consent form. Further, the court found substantial evidence that the parties had agreed that E.G. would be the sole legal parent. Accordingly, the court ruled that K.M. lacked standing and granted E.G.’s motion to quash and dismiss the petition. The Court of Appeals upheld the trial court’s decision, although it disagreed with its ruling that K.M. lacked standing to bring the action to determine parentage under the Uniform Parentage Act (UPA). As the genetic mother, K.M. qualiﬁed as an ‘interested party’ for purposes of obtaining a judicial declaration of her status as a parent. However, K.M.’s claim to be a legal parent was rejected. Following Johnson, the court said that when there are two biological mothers, the legal mother is the one who ‘from the outset intended to be the child’s mother.’ In subsequent cases, appellate courts have construed the Johnson test to mean that the intent to be the parent is the ‘tie-breaker’ when two women have equal claims.10 The court explicitly declined to consider the parental role played by K.M., saying that the appellate courts have consistently held that the domestic partner of a child’s natural mother does not qualify as a parent under the UPA despite the parental role the partner played.11 Nor was the court willing to consider the interests of the children, who had established a loving relationship with K.M. It noted that in Johnson, the Supreme Court expressly rejected the assertion that parentage can be based on the best interests of the child: ‘such an approach raises the repugnant specter of governmental interference in matters implicating our most fundamental notions of privacy, and confuses concepts of parentage and custody. Logically, the determination of parentage must precede, and should not be dictated by, eventual custody decisions.’12 Basing parentage on a best interests standard would put at risk the rights of any natural parent who entered into a relationship and encouraged the formation of parental bonds between the children and the new partner. Thus, K.M. v. E.G. reafﬁrms the approach taken in Johnson. Ordinarily, the ‘natural’ parent is the legal parent, but where there are two biological mothers, it is the initial intent to parent that matters, not the parental role, not the best interests of the child. The appellate court also rejected the assumption of the trial court that under California law there could be two legal mothers. ‘As we understand Johnson, although genetic consanguinity gives a woman a col-

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orable claim of maternity, the biological connection does not ripen into parentage unless the evidence establishes that the genetic mother intended to raise the child as her own.’13 But what if both women had intended to raise the children together? The court did not address this issue, because this was not the situation in this case. It is virtually certain, however, that such a case will arise, if one is not already making its way through the courts. It seems likely that in a case where there are two biological mothers, who intended to raise the children together, the California courts will have to recognize both as legal parents. The Baby M, Johnson, Buzzanca, and K.M. cases all involved collaborative reproduction14 in which one of the contracting parties had a change of mind after the initial agreement was made, and either sought to establish or, in the case of Mr. Buzzanca, to disavow, parental rights and responsibilities after the child’s birth. However, disputes over parentage and custody are not occasioned solely by contractual relations and a subsequent change of mind; sometimes medical error leads to competing parental claims.15

Switched Embryos Perry-Rogers v. Fasano16 was a case in which medical error led to implanting the wrong embryos into a woman, causing an “accidental surrogacy”. In April 1998, two couples began an IVF programme. Embryos created by Deborah Perry-Rogers and Robert Rogers were mistakenly implanted in the uterus of Donna Fasano, along with embryos created by Donna and Richard Fasano. On May 28, 1998 both couples were notiﬁed of the mistake and of the need for DNA and amniocentesis tests. The Rogerses attempted to contact the Fasanos, but the Fasanos did not respond. Nor did Mrs. Fasano undergo any testing to ﬁnd out the genetic identity of the babies she was carrying. However, the truth became obvious on December 29, 1998, when she gave birth to two male infants, one white and one black. In April 1999, DNA testing was conducted, and the results established that the Rogerses were the genetic parents of the black child, now known as Akeil Richard Rogers. However, according to Ms. Perry-Rogers, the Fasanos agreed to relinquish custody of Akeil only upon the execution of a written statement, which entitled the Fasanos to future visitation with Akeil. Ms. Perry-Rogers stated that during the period between Akeil’s birth on December 29, 1998 and May 10, 1999, the Fasanos permitted her only two brief visits with Akeil, and that she felt compelled to sign the agreement in order to gain custody of her son. The visitation agreement provided for visits one full weekend per month, one weekend day each month, one week each summer, and alternating holidays. The agreement also contained a liquidated damages clause, providing that a violation of the Fasanos’ visitation rights under the agreement would entitle them to $200,000.

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The legal situation became unbelievably complex, with numerous applications, orders, and counter-orders. The upshot is that the Rogerses were named Akeil’s legal and biological parents, and given sole and exclusive custody, while the Fasanos were given visitation with Akeil every other weekend. The Rogerses then challenged the visitation order, which led the Fasanos to appeal the order giving the Rogerses custody of the child. The Rogerses maintained that the Fasanos had no basis for a legal claim to Akeil, because they were ‘genetic strangers’ to him. The court rejected their argument, saying, ‘In recognition of current reproductive technology, the term “genetic stranger” alone can no longer be enough to end a discussion of this issue. Additional considerations may be relevant for an initial threshold analysis of who is, or may be, a “parent”.’ The court declined to accept the ‘broad premise’ that in every case the genetic parents would necessarily win against a gestational surrogate who claimed parental rights. It acknowledged that there might be cases in which there could be more than one ‘natural mother’; for example, a lesbian couple who had agreed from the outset to create and raise a child together. The Fasanos had not sought custody, but if they had, the court noted parenthetically, application of the ‘intent’ analysis employed in Johnson v. Calvert would, in its view, require that custody be awarded to the Rogerses. ‘It was they who purposefully arranged for their genetic material to be taken and used in order to attempt to create their own child, whom they intended to rear.’17 The court’s decision in favor of the Rogerses, however, was not based on an ‘intent’ analysis, but rather on the fact that the Rogerses’ embryo was implanted in the ‘gestational mother’ by mistake, and the Fasanos knew of the error not long after it occurred. Therefore: . . . the happenstance of their nominal parenthood over plaintiffs’ child should have been treated as a mistake to be corrected as soon as possible, before development of a parental relationship. It bears more similarity to a mix-up at the time of a hospital’s discharge of two newborn infants, which should simply be corrected at once, than to one where a gestational mother has arguably the same rights to claim parentage as the genetic mother.18

The court held that the Fasanos were not entitled to a full evidentiary “best interests” hearing to determine whether a psychological bond exists that should not be abruptly severed. Any bonding on the part of Akeil to his gestational mother and her family ‘was the direct result of defendants’ failure to take timely action upon being informed of the clinic’s admitted error. Defendants cannot be permitted to purposefully act in such a way as to create a bond, and then rely upon it for their assertion of rights to which they would not otherwise be entitled.’19 There is little doubt that the Fasanos behaved badly. First they ignored the attempts of the Rogerses to contact them, probably because they did not want to acknowledge that any mistake had been made. Next, when the mistake could

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not be ignored, given the race of Akeil, the Fasanos extracted from Deborah Perry-Rogers, in exchange for custody of her own child, a visitation agreement that no court would have issued or upheld. Small wonder that the Rogerses wanted the Fasanos out of their family and their lives! In light of the Fasanos’ shoddy treatment of the Rogerses, the decision to deny them visitation rights seems eminently reasonable. However, the analogy on which the court based its decision – a mix-up of newborns in the hospital – is deeply ﬂawed. A woman who learns that she has taken the wrong baby home can give it back to its rightful parents before a ‘parental relationship’ develops. What exactly was Donna Fasano supposed to have done when she learned she was carrying someone else’s baby? Obviously, she could not return the mistakenly implanted embryo. Should she have promised the Rogerses that she would not form a gestational bond with their son, and that she would give the baby back at birth? Admittedly, this is what surrogates are supposed to do (and not always successfully, as the Baby M case dramatically shows), but at least surrogates can decide whether they would be able to carry a child for nine months and never regard it as their own before they contract to gestate someone else’s child for money. Donna Fasano did not make that decision. She carried the Rogerses’ child, at additional risk to her own health and that of her own biological child, without any compensation, because she had no other realistic choice. It seems most unfair to blame her for not correcting the mistake as soon as she learned of it. Courts make rulings based on the facts of the case, rather than on hypothetical situations. Nevertheless, we may wonder how the court would have decided the issue of visitation, if the Fasanos had behaved honourably. Suppose that they had not ignored the attempts of the Rogerses to contact them, had undergone prenatal genetic testing, and had acknowledged the mistake from the outset. Suppose further that Mrs. Fasano was willing to correct the mistake by relinquishing the Rogers baby to his parents upon his birth. But then suppose that the experience of gestation and birth had a profound and unexpected psychological effect on Mrs. Fasano. She might be unable to think of Akeil as just ‘someone else’s child’, but as her own baby and the twin brother of her other child. In this imaginary scenario, Mrs. Fasano does nothing blameworthy. In fact, our moral opinion of her is likely to be higher than our opinion of a woman who ﬁnds it easy to give up a child she has carried and birthed. If the Fasanos had done nothing wrong, would they have been entitled to visitation rights, or perhaps even joint custody? All the above cases make it clear that courts are increasingly required to make Solomonic decisions regarding the parental rights and responsibilities of those involved in artiﬁcial reproduction. The Buzzanca court issued a plea to the Legislature ‘to sort out the parent rights and responsibilities of those involved in artiﬁcial reproduction’, saying:

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No matter what one thinks of artiﬁcial insemination, traditional and gestational surrogacy (in all its permutations), and – as now appears in the not-too-distant future, cloning and even gene splicing – courts are still going to be faced with the problem of determining legal parentage. A child cannot be ignored. Even if all means of artiﬁcial reproduction were outlawed with draconian criminal penalties visited on the doctors and parties involved, courts will still be called upon to decide who the lawful parents really are and who – other than the taxpayers – is obligated to provide maintenance and support for the child. These cases will not go away.20

In deciding who the lawful parents really are, courts must ask themselves, What makes someone a parent? As one writer has put it, ‘What exactly makes a child “ours”? The DNA we contribute or the time and love? The womb or the sweat equity?’21

Bases of Parenthood Mary Shanley extracts four major positions concerning the question of what should give someone a claim to be recognized as a legal parent.22 1. Genetic link between the adult and offspring. ‘. . . this position would make it reasonable to give parental rights to a biological lesbian mother, while denying them to her partner, and to allow gamete donors to seek legal recognition of their parenthood.’23 This standard makes biology the most important factor, but biological connection is not identical with genetic connection, as the switched embryo and gestational surrogate cases make clear. What if two women have a claim to be the biological mothers? This leads to the next criterion: 2. Contract or ‘intent-based parenthood’.24 ‘[T]his position would make it possible for a caregiver who was genetically unrelated to a child to assume parental status by agreement or contract.’25 3. Social role or parenting. This position is likely to favour the parental claims of adoptive parents over biological parents, and to recognize the parental claims of non-biological care givers like lesbian co-mothers.26 4. Best interest of the child. This position focuses not on the adults’ rights, but the child’s needs. This gives it a moral signiﬁcance that is missing in the other three viewpoints. As Mary Shanley explains it: The strength of the best interest standard is that it places the child at the center of the analysis and allows (indeed invites) a particularized ruling in the light of the speciﬁc facts of a given child’s situation. It distinguishes the grievances adults have with one another from their respective abilities to provide for and nurture a child. The best interest standard directs attention not to adults’ self-ownership, intent, or action, but to how best to provide a particular child with physical sustenance and psychological nurture.27

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The best interests of the child has great intuitive appeal since it moves away from the presumption that children are property, to be parceled out to their rightful owners. However, a best interest standard has its own difﬁculties. How do we determine where the best interests of children lie? Should we assume that, in the absence of neglect or abuse, children are better off with a biological parent? Or is it more important that children have two parents rather than one? How important is it that their parents be married? Clearly, our views about what is in the best interests of children are going to be affected by, perhaps determined by, a host of moral, social, and political views. While such questions are often raised in the context of artiﬁcial reproduction, they can occur in a variety of situations. One situation that has required courts to think long and hard about the components of parenthood are cases in which unwed fathers challenge adoptions to which they have not consented. In thinking about the puzzles raised by ART, it may be helpful to examine these cases, and the principles courts have developed to balance the claims of biology and rearing.

Unwed Father Cases The cases known as ‘unwed father cases’ or ‘thwarted father cases’ provide a vehicle for understanding the different components of parenthood. We can begin with one of the more famous ones, the case of Baby Girl Clausen,28 or Baby Jessica, as the media dubbed her. Baby Jessica The U.S. nation watched in dismay as ‘Baby Jessica’ was dragged, sobbing, from the arms of the woman she knew as ‘Mommy’, and returned to her biological parents. The story began in Iowa in 1990 when Cara Clausen, 28 and unmarried, discovered she was pregnant. Cara had just broken up with her boyfriend, Daniel Schmidt, and started dating Scott Seefeldt, so it was Scott’s name she put on the birth certiﬁcate when her daughter was born.29 Two days after giving birth on February 8, 1991, Cara waived her parental rights, as did Scott, allowing Roberta and Jan DeBoer, a Michigan couple, who had learned about Cara through an Iowa friend, to take custody of Jessica and begin the process of adopting her. Six days after the birth, Cara regretted her decision and sought to regain custody of her daughter.30 She began by informing Dan Schmidt, whom she had never told she was pregnant, that she believed he was the father of her child. She went to a support-group meeting of Concerned United Birthparents and heard other mothers’ stories of the sorrow they felt at giving up their babies. On March 6, 1991, when Jessica was not yet one month

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old, Cara ﬁled a request to revoke her consent to custody, confessing to the court that she had lied about the identity of the biological father. Shortly thereafter, Daniel ﬁled an afﬁdavit of paternity, and a petition to vacate the termination of paternal rights and to intervene in the adoption. An Iowa court voided the entire adoption, and the DeBoers were ordered to turn Jessica over. Because Daniel’s consent to the adoption had never been obtained, his parental rights could not be terminated absent a showing of abandonment or unﬁtness, neither of which was established. The DeBoers decided to ﬁght for Jessica. They argued that Dan was not a ﬁt parent pointing out that he had had two other children out of wedlock whom he had failed to support and with whom he had only sporadic contact. The Iowa Supreme Court agreed with the DeBoers that they were undoubtedly the better parents, and Jessica would be better off with them.31 Nevertheless, the court declined to take a ‘best interests’ approach and ordered custody of the baby to be transferred to Daniel: As tempting as it is to resolve this highly emotional issue with one’s heart, we do not have the unbridled discretion of a Solomon. Ours is a system of law, and adoptions are solely creatures of statute. As the district court noted, without established procedures to guide courts in such matters, they would ‘be engaged in uncontrolled social engineering.’This is not permitted under our law; ‘courts are not free to take children from parents simply by deciding another home appears more advantageous.’ In re Burney, 259 N.W.2d 322, 324 (Iowa 1977).32

The DeBoers refused to comply and instead ﬁled a petition in their home state, Michigan, asking that the Michigan court refuse to give full faith and credit to the Iowa decree, since the Iowa court failed to make a ‘best interest’ determination regarding custody between the biological father and the prospective adoptive parents with whom child had lived almost since birth. By the time the case was over, it had been through ﬁve courts, including the United States Supreme Court, Dan and Cara had married and had another child, and Jessica was two-and-a-half years old. An overwhelming majority of the public believed the courts erred in returning Jessica to the Schmidts, taking her from the only parents she had ever known. Harvard law professor Elizabeth Bartholet, author of Family Bonds: Adoption and the Politics of Parenting, and an adoptive mother herself, considers it ‘outrageous’ that the only issue the courts considered was whether Dan Schmidt’s rights were appropriately terminated.33 In an op-ed piece entitled, ‘Blood Parents vs. Real Parents’, she wrote, ‘Dan Schmidt, who hasn’t been part of Jessica’s life since the sexual act that resulted in her conception over three years ago, is termed the “real” or “natural” parent and given an absolute right to claim his genetic product.’34 Bartholet regards the DeBoers as the real parents: they were the ones who cared for, loved, and raised Jessica. She regards Dan Schmidt as an interloper

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into that family unit, a mere ‘sperm impregnator’,35 someone who had no signiﬁcant connection to Jessica. Bartholet’s dismissal of genetic connection as a basis for parenthood is shared by many adoptive parents. As one of them put it to me, ‘Why should being a parent depend on who screwed whom?’ Yet surely genetic connection counts for something. It certainly counts for ‘ﬁnancial fatherhood’. States uniformly require men not married to child’s mother to pay child support so long as they’re proved to be the biological father. The obligation to pay child support is not alleviated by the fact that the woman misled the man into thinking that she was using birth control.36 In fact, even being the victim of statutory rape does not alleviate child support obligations. The Kansas Supreme Court upheld a child support order on a 13-year-old boy who, at the age of 12, had a sexual relationship with his 17-year-old babysitter.37 Other courts have held the same, saying that ‘public policy strongly favours legitimization and protection of children’ and holding that ‘wrongful conduct of one of the parents does not in any way alter the parental obligation to support the child.’38 Biological fatherhood thus imposes parental obligations, but is it a basis for parental rights? Common Law and Unwed Fathers Under common law, the father of a child was identiﬁed by his relation to the child’s mother. If she was his wife, the child was “his” and he exercised exclusive custodial authority. If she was not his wife, the child was “ﬁlius nullius,” a child of no one. Because unwed fathers had no responsibility for, or rights to, non-marital children, the common law gave all the decision-making power about adoption to the child’s mother, which some feminists think is the way it ought to be. However, common law was hardly feminist. It was profoundly patriarchal, and designed to protect men’s authority over their wives and marital children, while protecting them from the claims of non-marital children. The husband’s authority over his wife at common law was far-reaching. Her legal personality was subsumed in that of her husband. She couldn’t enter into contracts or be sued or engage in legal transactions without her husband. He owned outright her moveable property and had control of (though he could not alienate) her real estate. ‘So complete was the husband’s custodial authority that during his lifetime he had the power to convey his parental rights to a third person without the mother’s consent, and could name someone other than the mother to be the child’s guardian after his death.’39 Common law did not protect the interests of women or children, and ironically, in the modern era, it has not protected the interests of men either, insofar as they have attempted to have a say in the raising of their children when they have not married their mothers. In part, the common law conception of fatherhood is a result of the difﬁculty

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in past eras of ascertaining paternity. As the saying goes, ‘Mama’s baby, papa’s maybe.’Today, of course, the biological father can be determined with near certitude. The question, then, is why have the courts not based paternal rights on genes alone, as they have tended to based paternal responsibilities? The answer, I think, is a recognition that genes alone do not, and should not, determine legal paternity. At stake are more than the interests or rights of biological fathers, but also the interests of children, women, and existing families. The legal status of unwed father began to change in 1972, when in a series of cases, the Supreme Court held that while biological fatherhood by itself does not confer parental rights, biological connection does give unwed fathers the opportunity to establish a parental role. The ﬁrst case in which the Supreme Court considered custodial rights of unwed fathers was Stanley v. Illinois.40 Mr. Stanley had lived with his three biological children and their mother intermittently for 18 years. When she died, Illinois declared the children wards of the state and placed them with courtappointed guardians without hearing as to Stanley’s ﬁtness as a parent. Stanley protested, arguing that Illinois law denied him equal protection of the laws since neither unwed mothers, nor married fathers or mothers, could be deprived of custody of their children unless shown to be unﬁt. Illinois argued that Stanley’s ﬁtness was irrelevant because an unwed father was not a ‘parent’; an unwed biological father was presumed unﬁt because he had not married the mother. The Supreme Court rejected Illinois’s argument. It held that the failure to provide a hearing on parental ﬁtness violated the Equal Protection Clause of the Fourteenth Amendment because it treated Stanley differently from married fathers and unmarried mothers, and it violated the Due Process Clause because it deprived Stanley of a fundamental liberty interest (that of a man in the children he has sired and raised) without a hearing.41 Biological fatherhood vs. biological motherhood Chief Justice Burger held that Stanley’s right to equal protection was not violated because there are relevant distinctions between biological fatherhood and biological motherhood. Not only are fathers harder to identify but more importantly the biological link between mother and child has social signiﬁcance. ‘The biological role of the mother in carrying and nursing an infant creates stronger bonds between her and the child than the bonds resulting from the male’s often casual encounter.’42 In other words, gestational connection makes for a stronger claim to parental rights than genetics alone. Why should this be the case? One answer is “sweat equity”: the mother’s biological role involves a lot more work than the father’s, because it includes nine months of gestation, labour, and birth. Another answer alludes to the prenatal bonding between mother and child. Not only does separating the child from its mother impose

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emotional harms on the woman, but it also deprives the child of a mother it has already come to know. Recent research indicates that the foetus, late in gestation, is aware of its mother’s heartbeat and respiration, recognizes her voice, and shortly after birth has memorized her smell. A third answer, which in some ways combines the ﬁrst two, considers gestation as a kind of rearing, which includes both work and psychological bonds. Burger’s argument that states may justiﬁably deprive unwed fathers of the right to consent to adoption, because fatherhood is different from motherhood, is not based only on the fact that mothers gestate. In addition, he argued that most unwed mothers exhibit concern for their offspring either permanently or at least until safely placed for adoption, while unwed fathers rarely burden either the mother or the child with their attentions or loyalties. ‘Centuries of human experience buttress this view of the realities of human conditions and suggest that unwed mothers of illegitimate children are generally more dependable protectors of their children than are unwed fathers.’43 Burger rejected the majority’s characterization of Stanley as a good father, noting that after the death of the children’s mother, Stanley transferred the care of the children to another couple. He made no efforts to be recognized as the father until the State became aware that no adult had any legal obligation for the support of the children. At that time, Stanley made himself known, but only, according to Burger, because he feared losing welfare payments if others were named guardians of the children. As in many of these cases, there are different versions of the stories, and the differences make a difference. But even if Burger was right that Stanley was not, in fact, a good father, that is no reason to deny Stanley the chance to prove otherwise, still less is it a reason to assume that all unmarried fathers are unﬁt. The State presumed that Peter Stanley was an unﬁt father, simply because he was not married to the children’s mother. That presumption, I maintain, is unfair not only to Stanley and other unwed fathers, but also to their children. Both Stanley and Baby Jessica can be faulted for an exclusive focus on the rights of the biological father; both left out a crucial element, namely, the welfare of the children. On the face of it, depriving children of the man they consider to be their father, and putting them into foster care, hardly can be in their interest. Their welfare is as important, if not more important, than whether Stanley was denied equal protection. Are Rights the Problem? A number of commentators argue that ‘rights talk’ distorts the issues in these kinds of cases.44 Some object to rights talk generally,45 especially when notions like family and parenthood are involved.46 These critics argue that a rightsbased conception is grounded in notions of exchange and individual rights and implicitly encourages parental possessiveness and self-centredness. Some do

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not reject rights altogether.47 They acknowledge that appeals to rights can provide effective tools for protecting vulnerable individuals, including children Nevertheless, they remain suspicious of the ways in which rights talk can distort matters. Bartlett states, ‘Legal disputes over parenthood are an example of how the presentation of claims in terms of individual rights may force controversies into a framework that misstates the harm to be avoided and undermines the values we should promote.’48 In my view, this is an over-simpliﬁcation. The problem is not framing the issue in terms of competing individual rights, but rather that the rights of children are too often given short shrift. There are a number of reasons for this. Historically, of course, children were treated virtually as property. Moreover, constitutional rights, such as equal protection and due process, have very little to do with the rights that children have to loving parents and a stable family. Constrained to analyze cases in these terms, it is little wonder that custody decisions often have nothing to say about the impact on the child. Rejecting this approach, one commentator writes: Children are not chattels in which adults have rights. Children ‘belong’ to no one but themselves. Parental rights doctrines should be seen as a way of protecting the child’s right to parental relationships free from unwarranted intrusion by the state or third parties. To the extent that a recognition of parental rights would be adverse to the child’s interests, the parental rights must give way to the child’s best interests.49

An important element of a best interests analysis would be the rearing role a biological parent has played, since children are likely to be psychologically damaged if deprived of someone who has played an important role in their upbringing. In cases after Stanley, the Court began to acknowledge the importance of rearing, drawing distinctions between unwed biological fathers who were involved in raising the children and those who were not. The relevance of rearing to paternal rights In Quilloin v. Walcott,50 the Court determined that an adoption could take place without an unwed father’s consent where he had ‘never shouldered any signiﬁcant responsibility with respect to the daily supervision, education, protection, or care of the child’,51 did not now seek custody, and where adoption did no more than legally recognize the existing living situation of the child and a family unit already in existence. Like Quilloin, Lehr v. Robertson52 also concerned an unwed father’s attempt to block adoption of his child by a stepfather. Jessica’s mother, Lorraine, married Richard Robertson a few months after Jessica’s birth. When Jessica was two years old, Richard sought to adopt her. Lehr, who had never lived with Lorraine and Jessica, and who was not named as the father on the birth certiﬁcate, ﬁled a paternity petition shortly after the

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adoption proceeding commenced. He challenged the granting of the adoption, claiming that he had a liberty interest in a relationship with Jessica and that the State’s failure to provide him notice of her pending adoption violated equal protection because it required the consent of the biological mother, but not the biological father for adoption. The Court rejected Lehr’s claim. ‘In doing so, the Court set forth its clearest explication of fatherhood. “Fatherhood” depends on the existence of an actual social relationship with the child and particularly on the man’s assumption of parental responsibilities.’53 According to the Court, when an unwed father demonstrates a full commitment to the responsibilities of parenthood by participating in the rearing of his child, his interest in personal contact with the child acquires substantial protection under the Due Process clause. At that point, he acts as a father toward his children. The biological connection by itself does not merit constitutional protection, but merely provides the man with a unique ‘opportunity’ to develop a relationship with his child. ‘The advent of this “biology plus” formula led many to conclude that the Court had ushered in a new era recognizing the rights of fathers based on the parent-child relationship.’54 Nevertheless, it is important to recognize that the ‘biology plus’ formula focused on the father’s right to the child, not on what would be best for the child. Protecting Existing Families The most recent unwed father case decided by the Supreme Court is Michael H. v. Gerald D.55 The novel factor in this case is that the child, Victoria, was conceived through an adulterous relationship between Michael H. and Carole, who was married to Gerald D. Carole continued to live with Gerald throughout the pregnancy and for ﬁve months after the child’s birth and Gerald believed the child was his. During the next three years, although Gerald and Carole remained married, she and the child lived sporadically with Gerald, Michael, and others. When Victoria was three years old, Carole became reconciled with Gerald. They had two more children together. Both Gerald and Carole opposed Michael’s petition to establish his paternity. Although Michael engaged in some social parenting and at time held himself out as a parent, Gerald appears to have been the predominant social parent. Scalia’s plurality opinion views the case as pitting a marital father’s rights against those of an ‘adulterous natural father’, who traditionally has never merited rights. Some commentators object to Scalia’s analysis as overly moralistic and conservative. However, it can be argued that children should be protected from third parties whose intervention threatens the integrity of their families. Once again, the problem with the analysis is not Scalia’s defence of the marital family against an outsider, but rather that the opinion does not focus

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on, or even consider, Victoria’s interests. The decision stressed Gerald’s status as exclusive rights-bearer according to history and tradition, rather than the importance of his parental role to the family and to Victoria. Barbara Woodhouse comments: If the law were to adopt a child’s perspective, however, the question would not be whether each of the daddies in Michael H. has the right to Victoria’s company, but whether two daddies are better than one. . . . If parental rights ﬂow from children’s needs, as I have argued, then the right of the biological father is defeated not by the right of the marital father but by the fact that the child already has a father who, not unimportantly, is the mother’s mate and the father of the child’s siblings. The child not only does not need but might be harmed by acquiring a competing father.56

Although I agree with Woodhouse that the focus should be on the child’s interests, this case exposes some of the difﬁculties with a best-interests standard. Woodhouse suggests that a child may be harmed by having two daddies. In contrast, Alta Charo suggests that perhaps ‘you can never have too many parents to love you.’57 Who is right?

The Best Interests of the Child The ‘best interests of the child’ standard is clearly an improvement over the out-dated patriarchal, possessive model of children as property. Nevertheless, the best-interests approach is not without problems. It is often criticized as vague, difﬁcult to apply, and reﬂective of social prejudices (although it can equally be used to refute a socially conservative approach).58 An illustration of the potential pitfalls of the best interests approach is given in recent case in Memphis, Tennessee. In May 2004, a judge terminated the parental rights of a Chinese couple, Shaoqiang and Qin Luo He, saying they failed to establish a meaningful relationship with their daughter, now 5, and that their home is unhealthy and unsafe. The Hes have spent four years trying to get their daughter, Anna Mae, back from foster parents who, they say, tricked them into giving up custody when she was a baby. The Hes are convinced that the wealth and community connections of Jerry and Louise Baker stacked the deck against them. ‘ “We are just shocked”, Mr. He said. “We did not abandon our child.” They will appeal, he said, adding “We are convinced that in Memphis, Tenn., justice does not come easy, especially for minorities and immigrants.” ’59 The story began in 1998 when Mr. He, who was studying for a graduate degree in economics at the University of Memphis, was accused by a fellow student of sexual assault. He was cleared of the charge, but lost his scholarship and his stipend, the couple’s sole means of support. His student visa was revoked and the INS began deportation proceedings. Overwhelmed, Mr. He

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turned to Mid-South Christian Services when Anna Mae was born in January 1999. They put the Hes in touch with the Bakers, who were experienced foster parents, and who agreed to take in Anna Mae while the Hes got back on their feet. Three months later, the Hes signed documents that described the arrangement as temporary. What the Hes did not know is that regaining custody required the consent of the Bakers and a judge. ‘Agency and court employees and a Chinese language translator have testiﬁed that no one explained the complex nature of the agreement. The couple, they said, was not advised to hire a lawyer.’60 Until the child’s second birthday, the Hes visited her every week. Tensions increased after Anna Mae’s ﬁrst birthday when the Hes asked a judge for custody. Though they had found work at a Chinese restaurant, the request was denied on the ground that they lacked ﬁnancial stability. On her second birthday, the Bakers would not let the Hes take her out for a family portrait, and called the police. The Hes say the police ordered them to stay away from the house or face arrest. Fearful of further trouble with the law, Mr. He says he complied. What he did not know was that, under Tennessee law, a fourmonth lapse in visits can be construed as abandonment, grounds for terminating the Hes’ parental rights. The Bakers want the custody decision to be based on the welfare of 5-yearold Anna May He, who has not seen her biological parents in three years as a result of a court order. They fear that the Hes will return Anna Mae to China. ‘ “What kind of quality of life is the child going to have in China: asked Larry Parris, a lawyer for the Bakers. “Common sense dictates that to take a child out of an environment where she’s ﬁrmly attached and settled is the ultimate devastation.” ’61 The custody battle is in many ways a struggle over cultural values. Many Americans might ﬁnd it difﬁcult to believe that the Hes could care about their daughter, yet give her to another couple to raise, even temporarily. Yet it is not uncommon in China for relatives to raise a child until she is three or four, so that the parents can work. Mrs. Baker thinks that if the Hes truly loved their daughter, they would leave her with the Bakers, and not take to a country where girls have inferior status, and where she would live ‘in poverty with unstable parents in a dirty house.’62 From a Chinese perspective, Anna Mae’s life in China would be a good one, as she would beneﬁt from living with an adoring extended family. A Chinese woman who has been attending the trial, comments, ‘Some Americans think they can provide better environment for children because of money, but Chinese think love and enduring care is more important.’63 The story of Anna Mae is evidence that a best interests standard could be used against poor and working class people, as well as members of a racial minority. However, that is not an argument against the best interests standard,

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but against its misuse. Surely, love and caring are more important than material goods when determining a child’s best interests. But even when best interests is based on the right values, it remains extremely difﬁcult to determine. For example, how should we weigh the value of remaining with one’s biological or ‘birth’ family against remaining with parents with whom one has become psychologically attached? On the one hand, there is considerable evidence that adopted children often seek information about or contact with their birth families, suggesting that birth families do matter. On the other hand, the ties between adopted children and their parents can be just as strong as those between biological parents and children. How can we possibly know what will be best for the child? According to news reports, Baby Jessica – now Anna Jacqueline Schmidt – has made a happy adjustment to her new life. So, is she better off now, and how can we know? Or consider a young unmarried woman who becomes pregnant. She wants what’s best for her child. Should she attempt to raise him by herself, or give him up for adoption? People have extremely strong views on the topic, but I do not think that the evidence is decisive, one way or the other. What I’m suggesting is that there may not be a ‘best interests of the child’, or at least not a discoverable one. If the child stays with his mother, he’ll become one sort of person, with one set of interests. If he is adopted, he’ll very likely become another, with entirely different interests. We cannot decide which choice will serve his best interests, as the interests themselves will change, depending on the family and the environment in which he grows up. But if we cannot know what’s in the child’s best interests, at least we can try to minimize the harm to children. Prolonged custody battles, such as occurred in the Baby Jessica case, clearly are harmful to children. For this, the DeBoers must take much of the responsibility. It was the DeBoers who appealed each decision, dragging out the legal proceedings until Jessica was two-and-a-half. I think it is ironic that the basis of their claim that the Michigan court should not uphold the decision of the Iowa courts was that those courts did not consider the best interests of the child. Can their decision to continue the ﬁght for Jessica, given its shaky legal basis, be reasonably seen as in her best interests? The Baby Jessica case provokes allusions to the biblical story of King Solomon who had to decide which of two women was a baby’s real mother. As a child, I never understood why his offer to cut the baby in half demonstrated his wisdom; why would even a phony mother want half a dead baby? Yet the story has relevance for us because it shows how adults, bent on parenthood, can put their own needs ﬁrst, to the detriment of the child. Psychologist Gerald Koocher says that Jessica became a pawn. ‘ “The sad thing is that each set of adults has their own agenda. The DeBoers want and need a child, and she’s it. And the Schmidts, she’s their ﬂesh and blood, and they want to hold on to her.” ’64 This may not be entirely fair to the DeBoers, who undoubtedly fell in

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love with Jessica (or ‘bonded’, to use the psychological terminology) as soon as they took her home. She was not just ‘a child’ to them, even at the beginning. Nevertheless, for her sake, they should have returned her to her biological parents when she was a tiny infant, before she became attached to them. Forman agrees, correctly, I think, ‘Admittedly, the Baby Jessica case was a disaster, but it was caused less by the decision to protect an unwed father’s rights than by procedural problems with the case.’65 These procedural problems would be greatly reduced if the law on adoption did not vary from state to state. This would eliminate the temptation to ‘forum-shop’, as the DeBoers did. Another welcome change would be a reasonable waiting period before an adoption is ﬁnal, as is the law in the United Kingdom. I suggest one month, on the ground that a woman who is still post-partum should not be asked to make an irrevocable decision about giving up her child. The Uniform Adoption Act requires, as a general rule, that both parents must consent to their child’s adoption. However, it distinguishes the men who manifest parenting behaviour and have therefore earned the right to withhold consent from a proposed adoption from the men who fail to perform parental duties and may therefore be denied the right to veto a proposed adoption.66 The Act pays special attention to ‘thwarted fathers’ who have been prevented by the misdeeds of others from functioning as parents. A thwarted father who wants to block a proposed adoption of a child must prove a compelling reason for not having performed parental duties. Even if this is the case, he will not succeed if there is clear and convincing evidence that it would be detrimental to the child to deny the adoption. The Act makes decisions about adoption and custody focus on the needs and welfare of the child, not simply on the rights of adults.

Conclusion Are there lessons from the unwed father cases for understanding parenthood in the context of artiﬁcial reproduction? Clearly there are important differences. For example, the notion of intent, so central to sorting out parenthood in the collaborative reproduction cases plays virtually no role in the adoption cases. Nevertheless, a theme common to both situations in the importance of parenting, of being a parent, that is, caring for and loving a child. However, the importance of parenting is not that it entitles a person to rights in the child. As Janet Leach Richards reminds us, ‘Children are not chattels in which adults have rights.’ Rather, parenting is important because of its crucial importance in the life of a child. The potential dangers of a best interests approach, so poignantly illustrated by the case of Anna Mae He, can be avoided if best interests is understood in

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terms of psychological well-being, not material wealth. If the Bakers genuinely had Anna Mae’s best interests at heart, they would have done what they promised to do: care for the child until her parents were able to care for her themselves. In fact, there is evidence that the Bakers never intended to relinquish Anna Mae. Their foster parent application to the Mid-South Christian Services agency mentions their desire to adopt a child and raise him or her in a Christian home.67 The judge’s ruling was not a best interests approach, but a perversion of that approach. The thwarted father cases are among the most troubling. The presumption that children belong with, and are better off with, their natural, biological parents is a reasonable one. Moreover, the fathers in these cases were undeniably wronged. Through no fault of their own they were deprived of the opportunity to play a parental role. However, if we focus on the child’s best interests, then we will not take a child from the only parents she has ever known in order to do justice to her biological father. Whatever beneﬁt to the child would come from knowing her biological parents, it is outweighed by the psychological damage resulting from taking from the people she regards as her parents. Thus, it is inconsistent with a child-centred approach. The San Francisco Court of Appeals based its decision in K.M. v. E.G. entirely on the agreement between the two women that E.G. would be the sole legal mother, and on the egg donor form K.M. signed, waiving all parental rights. The court acknowledged that the children would be harmed by being deprived of someone who had been a part of their family all their lives, but said that the children’s welfare could be considered only after parenthood is determined. K.M.’s genetic connection to the twins might have given her a claim to be a parent, if she had intended from the outset to be a rearing parent. Since she had waived her parental rights, and agreed that only E.G. was the legal mother, K.M.’s claim to be their mother was rejected. Therefore, the best interests of the children were irrelevant and could not be considered. The test of intent-based parenthood, established in Johnson and followed in K.M., is a reasonable way of protecting those who contract with egg donors and surrogates from subsequent claims to offspring. However, this case was not comparable to the normal case of egg donation, where the donor has only a genetic connection and plays no parental role. K.M. was not just an egg donor; she was E.G.’s lover, a family member, and a co-parent. It is hardly surprising that K.M. came to regard as her own children the twins she helped to create and to raise. She can hardly be blamed for trying to stop E.G. from taking them away. The psychological counsellor they saw should have foreseen that this arrangement was a disaster waiting to happen, and have strongly advised them against it. The refusal to consider K.M. a parent stems from the fact that this was a lesbian couple. If the couple had been heterosexual, the man who fathered the

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twins (whether coitally or by artiﬁcial insemination), and who participated in their rearing, would certainly have been recognized as the twins’ legal father, no matter what their agreement or what forms he signed. And if the children’s father were married to E.G., there would be no absolutely question that he was the natural, biological, and legal father. Though E.G. asked K.M. to marry her, and they exchanged rings, the marriage was merely symbolic, without legal force. If they were legally married, K.M. would have had the same rights as a member of any other divorced couple. This is another reason in favour of samesex marriage, as it would protect the interests of children when their parents separate. In the normal case, where the gamete donor plays no parental role, intent is the correct basis for determining parenthood. But once a biological parent is given the opportunity to play a parental role, that role, and its impact on the children, cannot be ignored. As Alta Charo puts it: Perhaps it is time to take a great leap in family law . . . Once a parent enters into a child’s life, whether by virtue of genes, gestation, or declaration, there is an unbreakable bond of psychology and history between the two . . . In an age when courts have been forced to manage the untidy families created by divorce and remarriage it is simply not enough to argue that it will be difﬁcult to organize a regime of family law that accommodates the permanency of both contractual and biological (both genetic and gestational) ties. And having admitted already that step-parents and grandparents are indeed real family members, what legitimate obstacle remains to accepting the adults who enter family arrangements via group marriage or homosexual marriage? Surely we can be creative enough to create a new category, somewhere between custodial parent and legal stranger, that captures these relationships.68

It may be objected that too many parents will be confusing and stressful for children. But I suspect that children are more likely to be damaged by the feeling that they have been abandoned by those who have played a parental role than by having multiple individuals who wish to remain in their lives, in some form or other. The insistence that children can have only one mother and one father is not necessarily in their best interests. However, this is an empirical question, and each case needs to be looked at on the merits. Woodhouse is probably right that Victoria’s interests are not served by the intrusion of her mother’s ex-lover into their family. Winston Churchill once said that ‘democracy is the worst form of Government, except all those other forms that have been tried from time to time.’69 Given the difﬁculties and potential pitfalls, the same might be said of a best interest approach to determining parenthood. The correct approach is not to give up on a best-interests approach, but to try to minimize its pitfalls. In the words of the Buzzanca court: ‘A child cannot be ignored.’

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Notes Denise Grady (1998). A different technique, which also results in children receiving genes from two different women, transplants ooplasm from donor eggs into the eggs of women whose infertility is due to ooplasmic defects. J.A. Barritt et al. (2001). The technique was developed by Dr. Jamie Grifo in the United States, but none of his patients became pregnant. Dr. Grifo gave his ﬁndings to doctors in China after regulations imposed by the Food and Drug Administration in 2001 made it too difﬁcult to continue the research in the United States. In 2003 Chinese doctors were able to make an infertile woman pregnant with the technique, although the pregnancy ended when the woman went into premature labour and the twin foetuses she was carrying died. Denise Grady (2003). 2 Some writers object to the term “surrogate motherhood” on the ground that “referring to the women who have carried a foetus to term and delivered a child as surrogates slights their status as mothers, and prejudices the discussion of disputes concerning parental status . . .” James Lindemann Nelson and Hilde Lindemann Nelson (2003). I take the point but use the term “surrogate mother” because it is more familiar than “contract birthgiver”. 3 In the Matter of Baby M., 109 N.J. 396 (1988). 4 Johnson v. Calvert, 851 P. 2d 776 (1993). 5 In re Buzzanca, 61 Cal. App. 4th, 72 Cl. Rptr. 2d 280. 6 Ellen Goodman (1997). 7 In re Buzzanca, 61 Cal. App. 4th 1410, 1412 (1998). 8 Ibid., 1418. 9 K.M. v. E.G., A101754, No. CV 020777 (Cal. Ct. Appl, 1st App. Dist., 5/10/04). 10 Citing Robert B. v. Susan B., 109 Cal. App. 4th, at pp. 1115–1116; see also In re Marriage of Buzzanca (1998) 61 Cal. App. 4th 1410, 1421–1422. 11 Nancy S., 228 Cal. App. 3d at p. 836. 12 Johnson, 5 Cal. 4th at p. 93, fn. 10. 13 K.M. v. E.G., supra, p. 17, footnote 9. 14 The term “collaborative reproduction” was coined by John Robertson, who deﬁnes it this way: ‘. . . those situations in which someone other than one’s partner provides the gametes or gestation necessary for reproduction, such as occurs with sperm, egg, or embryo donation, or surrogate motherhood.’ (John A. Robertson 1994, 119) 15 See Leeds Teaching Hospital NHS Trust v. A and others, [2003] EWHC 259 (QB), [2003] 1 FLR 1091, [2003] 1 FCR 599. 16 Perry-Rogers v. Fasano, 715 N.Y.S.2d 19 (N.Y. App. Div. 2000). 17 Perry-Rogers v. Fasano, 276 A.D.2d 67 at 73. 18 Ibid., 75. 19 Ibid., 76. 20 Ibid., 1428–29. 21 Ellen Goodman (1998). 22 Mary Lyndon Shanley (2001). 23 Ibid., 129–130. 24 See, for example, Marjorie Maguire Shultz (1990). 25 Shanley (2001, 130). 26 See, for example, V.C. v. M.J.B., 163 N.J. 200; 748 A.2d 539 (2000). ‘Once a third party has been determined to be a psychological parent to a child, he or she stands in parity with the legal parent, and custody and visitation issues are to be determined on a best interests standard . . .’ 27 Shanley (2001, 135–136). 28 In the Interest of B.G.C., 496 N.W.2d 239. 1

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Nancy Gibbs (1993). Deborah L. Forman (1994). 31 See note 28, above. 32 Ibid., 4. 33 Gibbs, (1993, 49). 34 Elizabeth Bartholet (1993). 35 “Sperm impregnator” was the term used by an adoptive couple to refer to the birth father in Terraszas v. Riggs, 612 S.W.2d 461, 466 (Tenn. Ct. App. 1980). 36 An Albuquerque man objected to paying child support after his ex-girlfriend became pregnant because, according to him, she purposely stopped taking birth control pills without telling him. He sued her for breach of contract, fraud, and conversion of property: his sperm. The New Mexico Supreme Court declined to hear the case, giving Kellie Smith her third and ﬁnal legal victory. See Scott Sandlin (2001). 37 State ex rel. Hermesmann v. Seyer, 847 P.2d 1273 (Kan. 1993). 38 Mercer County Dep’t of Social Servs. Ex re. Imogene T. v. Alf M., 589 N.Y.S. 2d 288, 289 (Fam. Ct. 1992). 39 Mary Shanley (1995, 68). 40 Stanley v. Illinois, 405 U.S. 645 (1972). 41 Ibid. 657–58. See also Mary L. Shanley (1995). 42 Stanley at 665–66 (Burger, C.J., dissenting). 43 Ibid. 44 See, for example, Wendy Anton Fitzgerald (1994); and Martha Minow (1990). 45 Mary Ann Glendon (1991). 46 See Thomas A. Murray (1996). 47 Katharine T. Bartlett (1988). See also Minow (1990, 303–304). 48 Bartlett (1988, 295–296). 49 Janet Leach Richards (1994, 1271–72). 50 Quilloin v. Walcott, 434 U.S. 246 (1978). 51 Ibid., 256. 52 Lehr v. Robertson, 463 U.S. 248 (1983). 53 Forman (1994, 975). 54 Ibid. 55 Michael H. v. Gerald D., 491 U.S. 110 (1989). 56 Woodhouse, (1993, 1858). 57 R. Alta Charo, (1992–3, 23). 58 See Charo (1992–3). Charo argues that the refusal to recognize non-traditional families, and the fact that multiple adults sometimes play important roles in children’s lives, can be harmful to children. 59 Ariel Hart, “Chinese Parents Not Tricked, Judge Says in Custody Case,” New York Times, May 13, 2004, A16. 60 Andrew Jacobs (2004). 61 Ibid. 62 Hart (2004). 63 Jacobs (2004). 64 Don Terry (1993). 65 Forman, (1994, 970). 66 UAA, p. 41. 67 Ibid. 68 Charo, (1992–3, 22). 69 Hansard 11 Nov. 1947, col. 206. 29 30

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References Bartlett, Katherine T. (1998) ‘Re-expressing Parenthood’. Yale Law Journal 98, 293. Barritt, J.A. et al. (2001) ‘Mitochondria in human offspring derived from ooplasmic transplantation: Brief communication’. Human Reproduction 16, 513. Bartholet, Elizabeth (1993) ‘Blood Parents vs Real Parents’ New York Times, July 13 A19. Charo, R. Alta (1992–3) ‘And Baby Makes Three – or Four, or Five, or Six: Redeﬁning the Family After the Reproduction Revolution’, Wisconsin Women’s Law Journal 7, 1–23. Fitzgerald, Wendy Anton (1994) ‘Maturity, Difference and Mystery: Children’s Perspectives and the Law’, Arizona Law Review 72, 967. Forman, Deborah L. (1994) ‘Unwed Fathers and Adoption: A Theoretical Analysis in Context’, Texas Law Review 72, 967. Gibbs, Nancy (1993) ‘In Whose Best Interest?’ Time, July 19, 46. Glendon, Mary Ann (1991) Rights Talk. (New York, Free Press). Goodman, Ellen (1997) ‘The Disturbing Case of a High-Tech Orphan’, Boston Globe, December 14, D7. ——— (1998) ‘In This Test of Family Values, The Answer is Love, Not Science’, Boston Globe August 9, E7. Grady, Denise (1998) ‘Doctors Using Hybrid Egg To Tackle Infertility In Older Women’, New York Times October 14, A16. ——— (2003) ‘Pregnancy Created Using Egg Nucleus of Infertile Woman’, New York Times October 14, A1. Hart, Ariel (2004) ‘Chinese Parents Not Tricked, Judge Says in Custody Case’ New York Times, May 13, A16. Jacobs, Andrew (2004) ‘Chinese and American Cultures Clash in Custody Battle for Girl, 5’, New York Times, March 2, A14. Minow, Martha (1990) Making All the Difference: Inclusion, Exclusion and American Law, (Ithaca, N.Y., Cornell University Press). Murray, Thomas A. (1996) The Worth of a Child. (Berkeley, University of California Press). Nelson, James Lindemann and Nelson, Hilde Lindemann (2003) ‘Reproductive Technologies, VI. Contract Pregnancy’ in Stephen G. Post, ed. The Encyclopedia of Bioethics 3rd ed, New York, Macmillan. Richards, Janet Leach (1994) ‘Redeﬁning Parenthood: Parental Rights Versus Child Rights’, Wayne Law Review 40, 1227. Robertson, John A. (1994) Children of Choice: Freedom and The New Reproductive Technologies (Princeton, NJ, Princeton University Press). Shandin, Scott (2001) ‘Mom wins Again in Stolen sperm Case’ Albuquerque Journal April 26. Shanley, Mary Lyndon (1995) ‘Unwed Fathers’ Rights, Adoption and Sex Equality’. Columbia Law Review 95, 60. ——— (2001) Making Babies, Making Families, Boston, (Beacon Press). Shultz, Marjorie Maguire (1990) ‘Reproductive Technology and Intent-Based Parenthood: An Opportunity For Gender Neutrality’ Wisconsin Law Review 297–398. Terry, Don (1993) ‘Tug-of-War Ends As Child is Moved’ New York Times, August 3, A13. Woodhouse, Barbara Bennett (1993) ‘Hatching the Egg: A Child Centered Perspective on Children’s Rights Cardozo Law Review, 14, 1746.

Index A, Re 4, 106–107, 117 n. 6, 122, 129–132, 134, 136–143, 145 n. 13 Abortion 1, 32, 207, 215 n. 45, 274 n. 15, 275 n. 31, 294 n. 2 Adolescence 22, 121, 151, 208, 213, 274 nn. 14–15, 308 Africa 3, 73, 76, 79–80, 183–184, 187, 190, 195, 223, 284 AIDS in 3, 77, 84, 194 AIDS 3, 9, 73–82, 194 Anorexia Nervosa 4, 149–152, 157–158, 202, 206, 208 Arthur, R. v. 8 n. 27, 101, 117 n. 3 Autism 3, 87–89, 91, 95, 97–8 B, Re 8 n. 27, 70 n. 28, 105, 116 nn. 1–2, 145 n. 7, 215 n. 71 Babies, premature 1, 2, 31–33, 35–36, 38–39, 42–43, 47–49, 57, 114, 117 n. 4, 119, 332 n. 1 severely disabled 1, 99 Bartholet, Elizabeth 320–321, 333 n. 34 Belgium 6, 255–258, 262, 265, 273 nn. 1–2, 3; 274 nn. 6, 9 Benatar, M. and Benatar, D. 4, 7 n. 11, 163–165, 178 n. 6 Best Interests of the child 32–33, 41, 53, 57–58, 68, 73–74, 81, 83, 91–92, 100, 103–104, 108–110, 113–114, 116 n. 1, 125–128, 134–136, 141–144, 146 n. 18, 164, 167, 170, 177, 206, 207, 211, 228, 234, 238, 240, 242–243, 245, 277 n. 57, 281, 282, 289, 292, 294 n. 3, 295, 299, 304, 307, 312, 314, 316, 318–320, 324, 326–332 Bonner v. Moran 230, 231–233 Brazier, M. and Bridge, C. 70 n. 39, 166, 178 n. 7, 213, 215–216 British Medical Association 11, 13, 26, 28, 70 n. 14, 151–152, 167, 172, 277 nn. 62, 65, 70; 290, 293

Brown, Rv. 87, 108, 161, 168–169, 178 n. 12, 179 n. 19, 221–222, 228, 234, 238 Bruch, Hilda 151, 155–156, 208 Buck v. Bell 221, 223 C, Re 99, 106, 114–115, 117 n. 11, 145 n. 7, 151, 211, 214 n. 13 Child-Headed Households 75–79, 81, 85 China, foot binding in 327, 332 Circumcision, male 4–5, 7–9, 161–162 Coleman, John 202 Conjoined Twins Case (Re A) 106–107, 117 n. 6 consent 2–4, 11, 13–14, 15, 22, 51–52, 54–60, 63–66, 68–69, 70 n. 20, 71 n. 51, 74–76, 79–83, 84 n. 10, 87– 88, 95–97, 101–103, 112, 115, 116 n. 1, 121–124, 126, 129–134, 139, 143, 145 n. 8, 161, 165, 168–170, 202–209, 212, 215 n. 62, 228–233, 236–238, 240, 244, 247–249, 259–262, 272, 274 nn. 16–17, 275 nn. 21-22, 25, 30, 31; 277 n. 62, 281, 285, 287–288, 291, 298–299, 312–314, 319–321, 323–325, 327, 329 competence to 8, 11, 14, 60, 64, 115, 203, 209, 247–248, 259, 261, 266, 274 n. 14, 275 n. 31, 276 n. 39 criminal law, in 161, 168, 180–181 informed 2, 15–16, 32–33, 38, 46–47, 54–55, 58, 66–67, 74–75, 81–82, 84 n. 7, 87–88, 95–97, 107, 129, 170, 184, 201, 203, 206, 209, 215 n. 62, 221, 225–226, 229, 233, 240–241, 247–249, 255–256, 258–261, 269, 271, 274 n. 18, 275 n. 30, 281, 289, 293, 298–301, 305–306, 316 refusal of 32, 102–103, 109, 112, 116–117, 145, 147, 206, 208, 210, 216, 274 n. 20 research, to 2–3, 11, 16–17, 19, 21, 24, 31, 33–41, 48, 51–69, 70 nn. 18,

Michael Freeman (Ed.), Children’s Health and Children’s Rights, 335–337. © 2006. Koninklijke Brill NV. Printed in the Netherlands.

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INDEX

21; 78, 82, 87, 90, 95–97, 99, 102, 117 n. 8, 123, 131, 166, 168, 187, 245–247, 260–261, 265, 274 nn. 6, 15; 275 n. 21, 276 n. 39, 277 n. 73, 287, 291, 307, 323, 332 n. 1 Curran v. Bosze 229, 233–234, 240–241 Cystic Fibrosis 18, 280, 283

287–288, 29–292, 295 n. 14, 297–298, 300–301, 305, 307, 317 Gillick Competence 55–56, 61, 121, 129–132, 134, 145 n. 13, 215 n. 73, 259, 275 n. 75 Glass case 3 Gostin, L. 291, 295 n. 21

Daube, David 234–235, 237, 241, 246 Daubert decision 241, 246, 253 deafness 283, 294 n. 7 Disability 99, 101, 111, 249 n. 8 Disabilities, severe 3–4, 14, 18–19, 82, 87, 90–91, 99–102, 104–108, 111, 113–115, 117 n. 7, 121, 124, 129, 133, 213, 249 n. 8, 261, 281–282 Donations, organ 5, 146, 219–220, 229–230, 232–235, 237–243, 245–246, 249 n. 7, 312, 314, 330, 332 n. 14 Douglas, Gillian 212, 215 n. 77, 249 n. 10 Down’s Syndrome 4, 42, 91, 101, 116 n. 1, 283, 292, 294 n. 6

Hart v. Brown 238, 253 Hellman, D. 286 HIV 3, 9–10, 73–83, 84 n. 2, 194 Human Genetics Commission 8 n. 38, 297, 302, 308

E, Re 146, 208–209, 211 Eating Disorders 150–153, 155–157, 159 n. 2, 204, 206 Embryos Switched 117 n. 8, 313, 315 European Convention on Human Rights and Bioethics 58, 62, 70 n. 22, 100, 112, 287, 291, 294 n. 12, 295 n. 17 Euthanasia 1, 6, 256–258, 262–268, 270–272, 273 n. 2, 274 nn. 10, 11 Belgium 6, 255–258, 262, 265, 273 nn. 1–2, 3; 274 nn. 6, 9 Netherlands 6, 255–258, 263, 265, 267, 272, 273 nn. 2–3, 274 n. 5 Female Genital Cutting 5, 123, 183, 198 n. 1 Foetus 32, 35–36, 122, 175, 178 n. 8, 281–282, 293, 294 n. 1, 323, 332 n. 1 Foot Binding 5, 197 Fortin, Jane 7 n. 2, 149, 209–210, 212 Gender Identity 4, 121–122, 124–125, 127, 129, 131, 137, 139, 144 n. 2 Genetic Screening 1, 280–282, 285, 287, 290, 294 n. 4 Genetic Testing 6, 280–281, 285,

Identity, right to 126, 128–129 Inuyama, Declaration of 287, 294 n. 11 J, Re 8 n. 35, 105–106, 108, 110, 117 n. 6, 118 n. 13, 136, 146 n. 15, 165–166, 178 n. 7, 214 n. 26, 215 n. 71 Jasanoff, Sheila 224–225, 246 King, Michael 275 n. 27

226, 245, 246, 260,

L, Re 209 Law Commission, English, 62, 72, 161, 168–169, 174 Lesbian, mothers 137, 313, 316, 318, 330 Lewis, Penney 18, 170, 210, 260 Lowe, N. and Juss, S. 212, 215 n. 77 M, Re 134, 145 n. 7, 178 n. 8, 210, 213 Mayall, Berry 2, 33–34, 47, 81 McCormick, R. 2, 3 media 4, 11, 23, 61, 150–152, 158, 193, 196, 220, 227, 249 n. 9, 255, 259–260, 319 Michael H v. Gerald D. 325–326, 333 n. 55 Mind/Body Dualism 4 Morgan, Derek, 176 Netherlands 6, 225, 256–258, 263, 265, 267, 272, 273 nn. 2, 4; 274 n. 5 Organ Donation 5, 146, 219–220, 229–230, 232–235, 237–243, 245–246, 249 n. 7, 312, 314, 330, 332 n. 14

INDEX

P, Re 210–211, 215 n. 52 parenthood 7, 274 n. 17, 311, 316, 318–319, 321, 323–325, 328–331 basis of 7 participation 1–2, 9, 11–15, 17–25, 31, 32–33, 35–37, 41, 43, 46–48, 54–57, 59, 61, 65–66, 68, 95–97, 185–187, 194–195, 232, 235, 237, 270, 277 n. 74, 282 barriers to 19–20, 24 tendency of 176 facilitation of 11, 13, 21, 23, 42, 46, 54, 133, 143, 166, 173, 184–190, 195, 198 n. 1, 277 n. 74, 291, 298–299, 301, 305–306 meaning of 203, 214 n. 16 policy on 12, 32, 164 Phimosis 171, 177 n. 1 Piper, Christine 226, 245–246 Premature babies 1–2, 31–33, 35–36, 38–39, 42–43, 47–49, 57, 114, 117 n. 4 Psychiatrists, as experts 5, 27, 87, 94, 220, 225, 238, 241–248, 276 n. 51 punishment 3, 87, 92–93, 118 n. 15, 149, 172, 178 n. 11, 179 n. 20, 213 n. 5 R Re 71 n. 51, 202–208, 211–212, 213 n. 7, 214 nn. 16, 40; 232, 253 Ramsey, Paul 2–3, 10, 95 Rawls, John 212 Refusing Treatment 4, 212 Reproduction Revolution 7 Research 2–3, 11, 16–17, 19, 21, 24, 31, 33–41, 48, 51–69, 70 nn. 18; 21, 78, 82, 87, 90, 95–97, 99, 102, 117 n. 8, 123, 131, 166, 168, 187, 230, 245–247, 260–261, 265, 274 n. 5, 15; 275 n. 21, 276 n. 39, 277 n. 73, 287, 291, 307, 323, 332 n. 1 children and 51 non-therapeutic 2–3, 52–53, 55–58, 61, 68, 95–97 therapeutic 53, 55–56, 95 Robinson, A. 286

337

S Re 8 n. 35, 145 n. 7, 165, 209, 215 n. 52 Saviour Siblings 6, 8 n. 20, 219, 249 n. 11 Seymour, John 201–202 Sickle Cell Disease 284 Social Darwinism 221–222 Singer, Peter 2, 7, 38–39, 154 Strunk v. Strunk 235 Szasz, Thomas 243–244 Teubner 220, 224–228, 248, 249 n. 2, 251–252 Self-referability, and 220, 224–228, 231, 246–247 Texts, legal 5, 161, 170, 219, 231–232, 247, 248 Thalassaemia 209, 284, 294 Tostan 184, 195–196, 198 n. 2 UN Convention on Rights of Child 73, 84 n. 3, 201 Unwed Father cases 319, 321–325, 329 Valverde 219, 223, 227, 246 views, raising of 2–3, 11, 14, 16–17, 20, 23, 27–28, 32–33, 35, 40, 42–47, 61, 63, 73, 76, 104, 109, 111, 113, 118 n. 13, 127–128, 136, 138, 141–142, 157, 204, 220, 224, 230–231, 242, 246, 269–270, 292, 319, 325, 328 W Re 4, 8 n. 34, 56, 61, 70 n. 20, 71 n. 51, 145 n. 7, 151, 202–209, 211–212, 213, 213 n. 6, 214 nn. 12, 16, 18 Winston-Jones case 8 n. 28, 116 Wolf, S. 135, 286 Wyatt case 8 n. 28, 114, 116 Yamamoto 208 Zaman v. Schultz 228–231 Zelizer, V. 174 Zhou, J.-N. 124

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