Synopses & Reviews
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.
Review
"The Troubled Helix includes many well-written and comprehensive chapters on the ethical, legal, and social implications (ELSI) of the Human Genome Project...a helpful text on the state of ESLI issues today." Dorothy Nelkin, The Lancet, North American Edition
Review
"...a serious attempt to present both the general reader and specialists in clinical genetics with some insights into the practical problems of the social and psychological aspects of modern human genetics....[I]t contains a lot of new and valuable information about patients' and geneticists' perceptions of genetic disease, together with some insights into the successes and difficulties of research directed at improving how we communicate. Hence it is a very timely addition to the publications on human genetics, and medical genetics in particular." D.J. Weatherall, British Medical Journal
Synopsis
This wide ranging and compelling account surveys the exciting opportunities and difficult problems which arise from human genetics.
Table of Contents
Preface. Part I. Personal Stories: 1. Daily life and the new genetics: some personal stories 1.2 Huntington's disease S. Wright, J. Madigan, Anon.; 1.3 Hereditary breast and ovarian cancer J. Zatz, E. Macke, Anon.; 1.4 Werdnig-Hoffman's syndrome A. Macaulay, H. Hearnshaw; 1.5 Sickle cell conditions M. France-Dawson, A. Mottoh; 1.6 Personal experiences of genetic diseases: a clinical geneticists' reaction P. S. Harper; Part II. Clinical Context: 2. The new genetics: a user's guide M. Pembrey; 3. Decision-making in the context of genetic risk S. Shiloh; 4. Genetic counselling: some issues of theory and practice S. Michie and T. Marteau; 5. Evaluating carrier testing: objectives and outcomes T. Marteau and E. Anionwu; 6. Psychosocial aspects of prenatal screening and diagnosis J. Green and H. Statham; 7. The genetic testing of children: a clinical perspective A. Clarke and F. Flinter; 8. Predictive genetic testing in children: paternalism or empiricism? S. Michie; Part III. Social Context: 9. The troubled helix: legal aspects of the new genetics D. Morgan; 10. Human pedigree and the 'best stock': from eugenics to genetics? J. Durant, A. Hansen and M. Bauer; 12. Families, kinship and genetics M. Richards; 13. Ethics of human genome analysis: some virtues and vices J. Wood-Harper and J. Harris; 14. Genetics and racism H. Bradby; 15. Predictive genetics: the cultural implications of supplying probable futures C. Davison; 16. The new genetics: a feminist view M. Stacey; 17. Afterword M. Richards and T. Marteau; Index.