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. 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