The troubled helix : social and psychological implications of the new human genetics

The availability of increasingly sophisticated information on our genetic makeup presents individuals, and society as a whole, with difficult decisions. Although it is hoped that these advances will ultimately lead the way to the effective treatment and screening of all diseases with a genetic component, at present many individuals agonize over the knowledge that they have or will develop an incurable genetic disease. This book explores and surveys these issues from a variety of perspectives: from personal accounts of individuals coping with the threat of genetic disease, to those of clinicians and scientists, and those concerned with the psychosocial, legal and ethical aspects ''This wide ranging and compelling account surveys the exciting opportunities and difficult problems which arise from the new human genetics. The availability of increasingly sophisticated information on our genetic make-up presents individuals, and society as a whole, with difficult decisions. Although it is hoped that these advances will ultimately lead the way to the effective treatment and screening for all diseases with a genetic component, at present many individuals are 'condemned' to a life sentence, in the knowledge that they, or their children, will suffer from an incurable genetic disease. This is the first book to attempt to explore and survey these issues from such a variety of perspectives: from personal accounts of individuals coping with the threat of genetic disease, from the viewpoint of clinicians and scientists, and from those concerned with psychosocial, legal and ethical aspects.''--Publisher's description. Read more... 1. Daily life and the new genetics: some personal stories -- 2. The new genetics: a user's guide / Marcus Pembrey -- 3. Decision-making in the context of genetic risk / Shoshana Shiloh -- 4. Genetic counselling: some issues of theory and practice / Susan Michie and Theresa Marteau -- 5. Evaluating carrier testing: objectives and outcomes / Theresa Marteau and Elizabeth Anionwu -- 6. Psychosocial aspects of prenatal screening and diagnosis / Josephine Green and Helen Statham -- 7. The genetic testing of children: a clinical perspective / Angus Clarke and Frances Flinter -- 8. Predictive genetic testing in children: paternalism or empiricism? / Susan Michie -- 9. The troubled helix: legal aspects of the new genetics / Derek Morgan -- 10. Human pedigree and the 'best stock': from eugenics to genetics? / Deborah Thom and Mary Jennings -- 11. Public understanding of the new genetics / John Durant, Anders Hansen and Martin Bauer This Wide Ranging And Compelling Account Surveys The Exciting Opportunities And Difficult Problems Which Arise From The New Human Genetics. The Availability Of Increasingly Sophisticated Information On Our Genetic Make-up Presents Individuals, And Society As A Whole, With Difficult Decisions. Although It Is Hoped That These Advances Will Ultimately Lead The Way To The Effective Treatment And Screening For All Diseases With A Genetic Component, At Present Many Individuals Are 'condemned' To A Life Sentence, In The Knowledge That They, Or Their Children, Will Suffer From An Incurable Genetic Disease. This Is The First Book To Attempt To Explore And Survey These Issues From Such A Variety Of Perspectives: From Personal Accounts Of Individuals Coping With The Threat Of Genetic Disease, From The Viewpoint Of Clinicians And Scientists, And From Those Concerned With Psychosocial, Legal And Ethical Aspects.--publisher's Description. 1. Daily Life And The New Genetics: Some Personal Stories -- 2. The New Genetics: A User's Guide / Marcus Pembrey -- 3. Decision-making In The Context Of Genetic Risk / Shoshana Shiloh -- 4. Genetic Counselling: Some Issues Of Theory And Practice / Susan Michie And Theresa Marteau -- 5. Evaluating Carrier Testing: Objectives And Outcomes / Theresa Marteau And Elizabeth Anionwu -- 6. Psychosocial Aspects Of Prenatal Screening And Diagnosis / Josephine Green And Helen Statham -- 7. The Genetic Testing Of Children: A Clinical Perspective / Angus Clarke And Frances Flinter -- 8. Predictive Genetic Testing In Children: Paternalism Or Empiricism? / Susan Michie -- 9. The Troubled Helix: Legal Aspects Of The New Genetics / Derek Morgan -- 10. Human Pedigree And The 'best Stock': From Eugenics To Genetics? / Deborah Thom And Mary Jennings -- 11. Public Understanding Of The New Genetics / John Durant, Anders Hansen And Martin Bauer. Edited By Theresa Marteau And Martin Richards. Includes Bibliographical References And Index. Frontmatter 1 Contents 7 List of contributors 9 Preface 13 Preface to the paperback edition 17 Acknowledgements 20 Part I - Personal stories 21 1 - Daily life and the new genetics: some personal stories 23 Part II - Clinical context 81 2 - The new genetics: a user's guide 83 3 - Decision-making in the context of genetic risk 102 4 - Genetic counselling: some issues of theory and practice 124 5 - Evaluating carrier testing: objectives and outcomes 143 6 - Psychosocial aspects of prenatal screening and diagnosis 160 7 - The genetic testing of children: a clinical perspective 184 8 - Predictive genetic testing in children: paternalism or empiricism? 197 Part III - Social context 205 9 - The troubled helix: legal aspects of the new genetics 207 10 - Human pedigree and the ‘best stock’: from eugenics to genetics? 231 11 - Public understanding of the new genetics 255 12 - Families, kinship and genetics 269 13 - Ethics of human genome analysis: some virtues and vices 294 14 - Genetics and racism 315 15 - Predictive genetics: the cultural implications of supplying probable futures 337 16 - The new genetics: a feminist view 351 17 - Afterword 370 Index 375 This wide ranging and compelling account surveys the exciting opportunities and difficult problems which arise from human genetics. The availability of increasingly sophisticated information on our genetic make-up presents individuals, and society as a whole, with difficult decisions. Although it is hoped that these advances will ultimately lead the way to the effective treatment and screening for all diseases with a genetic component, at present many individuals are 'condemned' to a life sentence, in the knowledge that they, or their children, will suffer from an incurable genetic disease. This was the first book to attempt to explore and survey these issues from such a variety of perspectives: from personal accounts of individuals coping with the threat of genetic disease, from the viewpoint of clinicians and scientists, and from those concerned with psychosocial, legal and ethical aspects

The availability of increasingly sophisticated information on our genetic makeup presents individuals, and society as a whole, with difficult decisions. Although it is hoped that these advances will ultimately lead the way to the effective treatment and screening of all diseases with a genetic component, at present many individuals agonize over the knowledge that they have or will develop an incurable genetic disease. This book explores and surveys these issues from a variety of perspectives: from personal accounts of individuals coping with the threat of genetic disease, to those of clinicians and scientists, and those concerned with the psychosocial, legal and ethical aspects.

The book contains black-and-white illustrations.

This section presents the voices of family members whose lives have been deeply touched by genetic disease.