The Genetic Testing of Children PDF
Preview The Genetic Testing of Children
THE GENETIC TESTING OF CHILDREN Taylor & Francis Taylor & Francis Group http:/taylorandfrancis.com THE GENETIC TESTING OF CHILDREN Angus Clarke Institute ofMedical Genetics, University of Wales College ofMedicine, Cardiff, UK /JIOS SCIENTIFIC PUBLISHERS Oxford • Washington DC ©BIOS Scientific Publishers Limited, 1998 First published 1998 All rights reserved. No part ofthis book may be reproduced or transmitted, in any form or by any means, without permission. A CIP catalogue record for this book is available from the British Library. ISBN 1 85996 052 9 BIOS Scientific Publishers Ltd 9 Newtec Place, Magdalen Road, Oxford OX41RE, UK Tel. +44 (0) 1865 726286. Fax. +44 (0) 1865 246823 WorldWide Web home page: http://www.bios.co.uk Typeset by Saxon Graphics Ltd, Derby, UK Contents List of contributors Xl Acknowledgements XV Preface XVll Introduction 1 Social and ethical issues around genetics 1 Children and childhood 3 Issues for practitioners (genetic counsellors) 4 Genetic testing in childhood 6 The relevant genetic contexts 7 Discussions about testing children 8 Lessons from screening children for susceptibility to disease 9 The 'adoption' model ofgenetic information 9 The contents of this volume 10 References 15 PART ONE: SETTING THE SCENE 1 The genetic testing of children: some legal and ethical concerns Sheila A.M. McLean 17 Introduction 17 Presymptomatic testing for childhood-onset disorders 21 Testing for late-onset disorders 22 Conclusion 23 References 25 2 Talking to children-and talking with them Priscilla Alderson 27 Introduction 27 Words and meanings 28 Risk in talking with children 28 Contradictions 29 Timing and content 32 Competence 33 Conclusion 35 References 35 3 Reflections on genetic testing in childhood Dietmar Mieth 37 Pragmatic ethical issues concerning diagnostic tests on children 37 Fundamental ethical issues concerning genetic tests on children 43 References 44 v vi CONTENTS PART TWO: CARRIER TESTING IN CHILDHOOD 4 On the receiving end of genetic medicine Christine Lavery 47 Introduction 47 MPS diseases 47 Conclusion 50 5 Testing children for balanced chromosomal translocations: parental views and experiences Chris Barnes 51 Introduction 51 Materials and methods 52 Results 52 Discussion and conclusions 57 References 60 6 Identifying carriers of balanced chromosomal translocations: interviews with family members Anita]olly, Evelyn Parsons and Angus Clarke 61 Introduction 61 Methodology 63 Corning to terms with being a carrier-how family members coped with learning about their carrier status 67 The tentative pregnancy 71 Feeling 'different' 73 The age of consent 78 Responses to genetic counselling 83 Summary 87 References 88 7 A retrospective study of genetic carrier testing in childhood Outi]iirvinen and Helena Kiiiiriiiinen 91 Introduction 91 Problems in testing children 91 What would be the optimal age for testing? 92 The practice of carrier testing-past and present 93 The aims of this study 93 Conclusion 96 References 96 8 Childhood testing for carrier status: the perspective of the Genetic Interest Group John Gillott 97 Introduction 97 Extract from the GIG response to the Clinical Genetics Society Report: 'The Genetic Testing of Children' 98 Clarification 99 Why testing for carrier status is different from testing for adult-onset conditions 100 Parental autonomy and the danger of harm 100 References 102 CONTENTS vii PART THREE: PREDICTIVE GENETIC TESTING 9 Telling the children Heather Skirton 103 Introduction 103 Study 103 Setting the scene 1OS Issues of disclosure 106 The process ofrenegotiation 109 Conclusion 110 References 111 10 Family processes in regard to genetic testing Seymour Kessler 113 Abstract 113 Introduction 113 Shame and guilt 114 Family dynamics 116 The protective function offamilies 118 The psychological needs ofchildren 120 References 121 11 Adolescent requests for predictive genetic testing Julia Binedell 123 Introduction 123 Current guidelines 123 The costs and benefits of childhood genetic testing 124 Self-referral by adolescents 125 The legal precedent for assessment of competence 125 How should decision-making competence by defined? 126 What is the evidence concerning competence in adolescents? 126 Barriers to competent decision making in adolescence 127 How do adults make genetic-related decisions? 128 How should competence be assessed, and by whom? 128 A framework for assessing competence in adolescence 129 Conclusions 129 Acknowledgements 130 References 130 12 Moving away from the Huntington's disease paradigm in the predictive genetic testing of children Cynthia B. Cohen 133 Abstract 133 Introduction 134 Disadvantages of testing children for adult-onset conditions 134 Benefits of testing children for adult-onset conditions 136 Other factors relevant to a decision 138 The roles of parents and professionals in the decision 140 Social import of predictive testing ofchildren 141 References 142 viii CONTENTS 13 Cancer susceptibility testing: risks, benefits and personal beliefs Andrea Farkas Patenaude 145 Introduction 145 Which children are potential testing candidates? 146 Complexity of cancer risk identification 146 Testing for which genes? Under what conditions? With what safeguards? 147 Risks ofgenetic testing of children for cancer susceptibility 150 Will parents want to test children? 150 The impact ofpersonal beliefs on the utilization ofgenetic testing 151 Professional guidelines and a need for public education 153 Summary 153 Acknowledgement 154 References 154 PART FOUR: RESEARCH PERSPECTIVES 14 The genetic testing of children: adult attitudes and children's understanding Martin Richards 157 Introduction 157 Diagnostic genetic testing 157 Predictive testing 158 Carrier detection in recessively-inherited disorders 159 Children's understanding of inheritance 160 What are public attitudes to the genetic testing ofchildren for late-onset genetic disorders 165 References 167 15 Predictive genetic testing in children: the need for psychological research Susan Michie and Theresa M. Marteau 169 Abstract 169 Introduction 169 Views ofusers and providers 170 Decision making in children 171 Psychological impact of predictive testing 175 Conclusion 178 Acknowledgements 179 References 179 16 Exploring the approach of psychology as a discipline to the childhood testing debate: issues oftheory, empiricism and power Lucy Brindle 183 Introduction 183 Empiricism as the key to objectivity 183 Formulating objects of debate 184 Accounting for inconsistency 184 An alternative paradigm 185 Psychology as contemporary theory 186 CONTENTS ix Constructing the subject of genetic testing 187 The formulation of informed decision making and competence within a cognitive framework 188 Talking about childhood testing-a discursive alternative to attitudes, competence and informed consent 190 Discussion 191 References 192 17 Predictive and carrier testing of children: professional dilemmas for clinical geneticists Alison Chapple, Carl May and Peter Campion 195. Abstract 195 Introduction 195 Study group and method 198 Discussion 208 Acknowledgements 209 References 209 18 Complementary methodologies in the evaluation of newborn screening for Duchenne muscular dystrophy Evelyn Parsons and Don Bradley 211 Introduction 211 The psychosocial evaluation 212 Complementary methodologies discussed 217 Complementary methodologies in practice 217 Summary 220 Conclusion 221 References 221 PART FIVE: THE WIDER CONTEXT 19 Childhood, genetics, ethics and the social context Priscilla Alderson 223 Introduction 223 Policy from the past 223 Today's attitudes towards childhood and adolescence 224 Research about childhood 226 Genetics and eugenics 229 Abstract or evidence-based ethics? 230 Reducing social into genetic concepts 231 Conclusion 233 References 234 20 Appropriate paternalism and the best interests of the child Zarrina Kurtz 237 Abstract 237 Paternalism 237 Rights 240 Decision making 241 Conclusion 243 References 243 ix
The list of books you might like
