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Zusatztext "I would like to recommend most parts of the book to all health care professionals. This volume can be considered as a valuable source of information" Human Genetics! 1999; ; "The Genetic Testing of Children is an excellent basis for further discussions Informationen zum Autor Institute of Medical Genetics, University of Wales College of Medicine, Cardiff, UK. Klappentext 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. Zusammenfassung This book, written by a leading geneticist, examines the ethical and social issues raised by the genetic testing of children. Inhaltsverzeichnis 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 t...
