The Troubled Helix (original) (raw)
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.
‘ … a very timely addition to the publications on human genetics, and medical genetics in particular … all those who are concerned in genetic counselling should read it.’
Source: British Medical Journal
‘ … ought to be read by everyone who has any involvement in this field...a valuable resource for those who want an authoritative view on the wider aspects of modern human genetics.’
Source: Journal of the Royal Society of Medicine
‘The volume’s collective treatment of the social context and construction of our understanding of genetics has ramifications that will extend beyond this current era of ‘new’ genetics.’
Source: Trends in Genetics
‘The book is enriched by a long section of personal accounts that dramatise the implications of genetic testing for individuals who are faced with the prospect of a late-onset disease and for their families who are also implicated.’
Source: The Lancet
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Contents
Contents
Select Frontmatter
Select Contents
Select List of contributors
Select Preface
Prefacepp xiii-xvi
- By [ Theresa Marteau](/core/search?filters%5BauthorTerms%5D=Theresa Marteau&eventCode=SE-AU), United Medical and Dental Schools of Guy's and St Thomas's, London,[ Martin Richards](/core/search?filters%5BauthorTerms%5D=Martin Richards&eventCode=SE-AU), University of Cambridge
Select Preface to the paperback edition
Preface to the paperback editionpp xvii-xix
- By [ Theresa Marteau](/core/search?filters%5BauthorTerms%5D=Theresa Marteau&eventCode=SE-AU), United Medical and Dental Schools of Guy's and St Thomas's, London,[ Martin Richards](/core/search?filters%5BauthorTerms%5D=Martin Richards&eventCode=SE-AU), University of Cambridge
Select Acknowledgements
Select Part I - Personal stories
Select 1 - Daily life and the new genetics: some personal stories
1 - Daily life and the new genetics: some personal storiespp 3-60
- By [ Martin Richards](/core/search?filters%5BauthorTerms%5D=Martin Richards&eventCode=SE-AU), University of Cambridge
Select Part II - Clinical context
Select 2 - The new genetics: a user's guide
2 - The new genetics: a user's guidepp 63-81
- By [ Marcus Pembrey](/core/search?filters%5BauthorTerms%5D=Marcus Pembrey&eventCode=SE-AU), Institute of Child Health, London
Select 3 - Decision-making in the context of genetic risk
3 - Decision-making in the context of genetic riskpp 82-103
- By [ Shoshana Shiloh](/core/search?filters%5BauthorTerms%5D=Shoshana Shiloh&eventCode=SE-AU), Tel Aviv University, Israel
Select 4 - Genetic counselling: some issues of theory and practice
4 - Genetic counselling: some issues of theory and practicepp 104-122
- By [ Susan Michie](/core/search?filters%5BauthorTerms%5D=Susan Michie&eventCode=SE-AU), Psychology and Genetics Research Group, UMDS, London,[ Theresa Marteau](/core/search?filters%5BauthorTerms%5D=Theresa Marteau&eventCode=SE-AU), Psychology and Genetics Research Group, UMDS
Select 5 - Evaluating carrier testing: objectives and outcomes
5 - Evaluating carrier testing: objectives and outcomespp 123-139
- By [ Theresa Marteau](/core/search?filters%5BauthorTerms%5D=Theresa Marteau&eventCode=SE-AU), Psychology and Genetics Research Group, UMDS,[ Elizabeth Anionwu](/core/search?filters%5BauthorTerms%5D=Elizabeth Anionwu&eventCode=SE-AU), Institute of Child Health, London
Select 6 - Psychosocial aspects of prenatal screening and diagnosis
6 - Psychosocial aspects of prenatal screening and diagnosispp 140-163
- By [ Josephine Green](/core/search?filters%5BauthorTerms%5D=Josephine Green&eventCode=SE-AU), University of Leeds,[ Helen Statham](/core/search?filters%5BauthorTerms%5D=Helen Statham&eventCode=SE-AU), University of Cambridge
Select 7 - The genetic testing of children: a clinical perspective
7 - The genetic testing of children: a clinical perspectivepp 164-176
- By [ Angus Clarke](/core/search?filters%5BauthorTerms%5D=Angus Clarke&eventCode=SE-AU), University Hospital of Wales,[ Frances Flinter](/core/search?filters%5BauthorTerms%5D=Frances Flinter&eventCode=SE-AU), Guy's Hospital, London
Select 8 - Predictive genetic testing in children: paternalism or empiricism?
8 - Predictive genetic testing in children: paternalism or empiricism?pp 177-184
- By [ Susan Michie](/core/search?filters%5BauthorTerms%5D=Susan Michie&eventCode=SE-AU), Psychology and Genetics Research Group, UMDS, London
Select Part III - Social context
Select 9 - The troubled helix: legal aspects of the new genetics
9 - The troubled helix: legal aspects of the new geneticspp 187-210
- By [ Derek Morgan](/core/search?filters%5BauthorTerms%5D=Derek Morgan&eventCode=SE-AU)
Select 10 - Human pedigree and the ‘best stock’: from eugenics to genetics?
10 - Human pedigree and the ‘best stock’: from eugenics to genetics?pp 211-234
- By [ Deborah Thom](/core/search?filters%5BauthorTerms%5D=Deborah Thom&eventCode=SE-AU), Robinson, Cambridge,[ Mary Jennings](/core/search?filters%5BauthorTerms%5D=Mary Jennings&eventCode=SE-AU), University of Cambridge
Select 11 - Public understanding of the new genetics
11 - Public understanding of the new geneticspp 235-248
- By [ John Durant](/core/search?filters%5BauthorTerms%5D=John Durant&eventCode=SE-AU), The Science Museum Library, London,[ Anders Hansen](/core/search?filters%5BauthorTerms%5D=Anders Hansen&eventCode=SE-AU), University of Leicester,[ Martin Bauer](/core/search?filters%5BauthorTerms%5D=Martin Bauer&eventCode=SE-AU), London School of Economics
Select 12 - Families, kinship and genetics
12 - Families, kinship and geneticspp 249-273
- By [ Martin Richards](/core/search?filters%5BauthorTerms%5D=Martin Richards&eventCode=SE-AU), University of Cambridge
Select 13 - Ethics of human genome analysis: some virtues and vices
13 - Ethics of human genome analysis: some virtues and vicespp 274-294
- By [ Janice Wood-Harper](/core/search?filters%5BauthorTerms%5D=Janice Wood-Harper&eventCode=SE-AU), University of Manchester,[ John Harris](/core/search?filters%5BauthorTerms%5D=John Harris&eventCode=SE-AU), University of Manchester
Select 14 - Genetics and racism
14 - Genetics and racismpp 295-316
- By [ Hannah Bradby](/core/search?filters%5BauthorTerms%5D=Hannah Bradby&eventCode=SE-AU), MRC Medical Sociology Unit, Glasgow
Select 15 - Predictive genetics: the cultural implications of supplying probable futures
15 - Predictive genetics: the cultural implications of supplying probable futurespp 317-330
- By [ Charlie Davison](/core/search?filters%5BauthorTerms%5D=Charlie Davison&eventCode=SE-AU), University of Essex
Select 16 - The new genetics: a feminist view
16 - The new genetics: a feminist viewpp 331-349
- By [ Meg Stacey](/core/search?filters%5BauthorTerms%5D=Meg Stacey&eventCode=SE-AU)
Select 17 - Afterword
17 - Afterwordpp 350-354
- By [ Martin Richards](/core/search?filters%5BauthorTerms%5D=Martin Richards&eventCode=SE-AU), University of Cambridge,[ Theresa Marteau](/core/search?filters%5BauthorTerms%5D=Theresa Marteau&eventCode=SE-AU), Psychology and Genetics Research Group, UMDS, London
Select Index
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