This book, written by a leading geneticist, examines the ethical and social issues raised by the genetic testing of children. The opinions of geneticists, ethicists and affected families are all included to give a balanced view of this controversial field. Issues covered include confidentiality, potential abuses of genetic information (eg the use of test results by insurance companies) and the value of predictive genetic testing.
The aim of the book is to improve awareness of the complexity of the issues raised and provide suggestions as to how the discussions must develop - it therefore raises new questions as well as answering those that already exist.
Table of Contents
List of contributors -- Acknowledgements -- Preface -- Introduction -- Social and ethical issues around genetics -- Children and childhood -- Issues for practitioners (genetic counsellors) -- Genetic testing in childhood -- The relevant genetic contexts -- Discussions about testing children -- Lessons from screening children for susceptibility to disease -- The 'adoption' model of genetic information -- The contents of this volume -- References -- PART ONE: SETTING THE SCENE -- 1 The genetic testing of children: some legal and ethical concerns /Sheila A.M. McLean -- Introduction -- Presymptomatic testing for childhood-onset disorders -- Testing for late-onset disorders -- Conclusion -- References -- 2 Talking to children - and talking with them /Priscilla Alderson -- Introduction -- Words and meanings -- Risk in talking with children -- Contradictions -- Timing and content -- Competence -- Conclusion -- References -- 3 Reflections on genetic testing in childhood /Dietmar Mieth -- Pragmatic ethical issues concerning diagnostic tests on children -- Fundamental ethical issues concerning genetic tests on children -- References -- PART TWO: CARRIER T ESTING IN CHILDH OOD -- 4 On the receiving end of genetic medicine /Christine Lavery -- Introduction -- MPS diseases -- Conclusion -- 5 Testing children for balanced chromosomal translocations: parental views and experiences /Chris Barnes -- Introduction -- Materials and methods -- Results -- Discussion and conclusions -- References -- 6 Identifying carriers of balanced chromosomal translocations: interviews with family members /Anita Jolly, Evelyn Parsons and Angus Clarke -- Introduction -- Methodology -- Coming to terms with being a carrier - how family members coped with learning about their carrier status -- The tentative pregnancy -- Feeling 'different' -- The age of consent -- Responses to genetic counselling -- Summary -- References -- A retrospective study of genetic carrier testing in childhood -- OutiJarvinen and Helena Kaiiridinen -- Introduction -- Problems in testing children -- What would be the optimal age for testing? -- The practice of carrier testing - past and present -- The aims of this study -- Conclusion -- References -- Childhood testing for carrier status: the perspective of the Genetic Interest Group -- John Gillott -- Introduction -- Extract from the GIG response to the Clinical Genetics Society Report: 'The Genetic Testing of Children' -- Clarification -- Why testing for carrier status is different from testing for adult-onset conditions -- Parental autonomy and the danger of harm -- References -- PART THREE: PREDICTIVE GENETIC TESTING -- 9 Telling the children /Heather Skirton -- Introduction -- Study -- Setting the scene -- Issues of disclosure -- The process of renegotiation -- Conclusion -- References -- 10 Family processes in regard to genetic testing /Seymour Kessler -- Abstract -- Introduction -- Shame and guilt -- Family dynamics -- The protective function of families -- The psychological needs of children -- References -- 11 Adolescent requests for predictive genetic testing /Julia Binedell -- Introduction -- Current guidelines -- The costs and benefits of childhood genetic testing -- Self-referral by adolescents -- The legal precedent for assessment of competence -- How should decision-making competence by defined? -- What is the evidence concerning competence in adolescents? -- Barriers to competent decision making in adolescence -- How do adults make genetic-related decisions? -- How should competence be assessed, and by whom? -- A framework for assessing competence in adolescence -- Conclusions -- Acknowledgements -- References -- 12 Moving away from the Huntington's disease paradigm in the predictive genetic testing of children /Cynthia B. Cohen -- Abstract -- Introduction -- Disadvantages of testing children for adult-onset conditions -- Benefits of testing children for adult-onset conditions -- Other factors relevant to a decision -- The roles of parents and professionals in the decision -- Social import of predictive testing of children -- References -- 13 Cancer susceptibility testing: risks, benefits and personal beliefs /Andrea Farkas Patenaude -- Introduction -- Which children are potential testing candidates? -- Complexity of cancer risk identification -- Testing for which genes? Under what conditions? With what safeguards? -- Risks of genetic testing of children for cancer susceptibility -- Will parents want to test children? -- The impact of personal beliefs on the utilization of genetic testing -- Professional guidelines and a need for public education -- Summary -- Acknowledgement -- References -- PART FOUR: RESEARCH PERSPECTIVES -- 14 The genetic testing of children: adult attitudes and children's understanding /Martin Richards -- Introduction -- Diagnostic genetic testing -- Predictive testing -- Carrier detection in recessively-inherited disorders -- Children's understanding of inheritance -- What are public attitudes to the genetic testing of children for late-onset genetic disorders -- References -- 15 Predictive genetic testing in children: the need for psychological research /Susan Michie and Theresa M. Marteau -- Abstract -- Introduction -- Views of users and providers -- Decision making in children -- Psychological impact of predictive testing -- Conclusion -- Acknowledgements -- References -- 16 Exploring the approach of psychology as a discipline to the childhood testing debate: issues of theory, empiricism and power /Lucy Brindle -- Introduction -- Empiricism as the key to objectivity -- Formulating objects of debate -- Accounting for inconsistency -- An alternative paradigm -- Psychology as contemporary theory -- Constructing the subject of genetic testing -- The formulation of informed decision making and competence within a cognitive framework -- Talking about childhood testing - a discursive alternative to attitudes, competence and informed consent -- Discussion -- References -- 17 Predictive and carrier testing of children: professional dilemmas for clinical geneticists /Alison Chapple, Carl May and Peter Campion -- Abstract -- Introduction -- Study group and method -- Discussion -- Acknowledgements -- References -- 18 Complementary methodologies in the evaluation of newborn screening for Duchenne muscular dystrophy /Evelyn Parsons and Don Bradley -- Introduction -- T he psychosocial evaluation -- Complementary methodologies discussed -- Complementary methodologies in practice -- Summary -- Conclusion -- References -- PART FIVE: THE WIDER CONTEXT -- 19 Childhood, genetics, ethics and the social context /Priscilla Alderson -- Introduction -- Policy from the past -- Today's attitudes towards childhood and adolescence -- Research about childhood -- Genetics and eugenics -- Abstract or evidence-based ethics? -- Reducing social into genetic concepts -- Conclusion -- References -- 20 Appropriate paternalism and the best interests of the child /Zarrina Kurtz -- Abstract -- Paternalism -- Rights -- Decision making -- Conclusion -- References -- 21 Predictive genetic screening and the concept of risk /Rogeer Hoedemaekers -- Introduction -- 'Risks' inherent in a genetic screening programme -- 'Uncertainty' and 'possibility', 'probability' and 'risk' -- Being at risk and taking a risk -- Genetic risk -- Risk perception, risk selection and risk taking -- The value of genetic information -- Conclusion -- Acknowledgements -- References -- 22 Commercial testing /Shirley Dalby -- Introduction -- Differences between the public and commercial sectors -- Causes for concern -- Who are the customers? -- Conclusions -- 23 International perspectives /Dorothy C. Wertz -- Abstract -- Introduction -- Survey methods -- Survey results -- Cultural and clinical contexts -- Discussion -- References -- Appendix 1. The genetic testing of children: Report of a working party of the Clinical Genetics Society -- Appendix 2. EURO SCREEN survey of attitudes to the genetic testing of children among members of the European Society of Human Genetics -- Index.
Institute of Medical Genetics, University of Wales College of Medicine, Cardiff, UK.