Genetics and society: A sociology of disease

Genetics and Society: A Sociology of Disease

Volumn , Issue , 2004, Pages 1-197

  Kerr, Anne ^a  

^a UNIVERSITY OF YORK   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84909112260     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.4324/9780203489512     Document Type: Book

References (284)

1. Abraham, J. and Lewis, G. (2002) 'Citizenship, medical expertise and the capitalist regulatory state in Europe', Sociology, 31:1, 67-88.
2. Albert, B. (1999) 'If you tolerate this your children will be next', Health Matters, 36, Spring. Available at (accessed 29 October 2003).
3. Allen, G. (1983) 'The misuse of biological hierarchies: the American eugenics movement, 1900-1940', History and Philosophy of the Life Sciences, 5:2, 105-28.
4. ALSPAC Advisory and Executive Management Structures. Available at _http:// www.alspac.bris.ac.uk/ALSPACext/MainProtocol/Appendix1.htm> (accessed 22 December 2003).
5. Anderson, R. (1999) 'Information technology in medical practice: safety and privacy lessons from the United Kingdom', Medical Journal of Australia, 170:4, 181-4, referenced in Churches, T. (2003) 'A proposed architecture and method of operation for improving the protection of privacy and confidentiality in disease registers', BMC Medical Research Methodology, 3:1, 1.
6. Anderton, J., Effert, H. and Lai, M. (1989) 'Ideology in the clinical context: chronic illness ethnicity and the discourse of normalisation', Sociology of Health and Illness, 11:3(Sep.) 253-78.
7. Anonymous (1979) 'Cystic fibrosis in adults', British Medical Journal, 2: 626.
8. Anonymous (2001) 'Perfect?', The Economist, 11 April.
9. Antonellis, A., Ellsworth, R., Sambuughin, N., Puls, I., Abel, A., Lee-Lin, S.-Q., Jordanova, A., Kremensky, I., Christodoulou, K. and Middleton, L.T. (2003) 'Glycyl tRNA Synthetase Mutations in Charcot-Marie-Tooth Disease Type 2D and Distal Spinal Muscular Atrophy Type V', American Journal of Human Genetics, 72:5, 1293-9.
10. Ashcroft, R. (2003) 'American biofutures: ideology and utopia in the Fukuyama-Stock debate', Journal of Medical Ethics, 29:1, 59-62.
11. Atkin, K., Ahmad, W. and Anionwu, E., (1998) 'Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals', Social Science and Medicine, 47:11, 1639-51.
12. Bailey, R. (1996) 'Prenatal testing and the prevention of impairment: a woman's right to choose?', in J. Morris (ed.) Encounters with Strangers: Feminism and Disability, London: Women's Press, 143-67.
13. Balmer, B. (1996) 'Managing mapping of the Human Genome Project', Social Studies of Science, 26: 531-73.
14. Barbero, G. and Sibinga, M. (1959) 'The electrolyte abnormality in cystic fibrosis of the pancreas', Pediatric Clinics of North America, 6: 221-40.
15. Barbour, V. (2003) 'UK Biobank: a project in search of a protocol?', The Lancet, 361:1734-8.
16. Batchelor, C., Parsons, E. and Atkinson, P. (1996) 'The career of a medical discovery', Qualitative Health Research, 6: 224-55.
17. Beaudry, P. (1987) 'Cystic fibrosis - clinical viewpoint - a disease that doesn't make sense', Progress in Clinical and Biological Research, 254: 1-5.
18. Beck, U. (1993) Die Erfindung des Politischen; trans. Mark Ritter (1997) The Reinvention of Politics: Rethinking Modernity in the Global Social Order, Cambridge:Polity Press.
19. Beck, U. (1995) Ecological Politics in an Age Of Risk, Cambridge: Polity Press.
20. Berg, K. (2001) 'DNA sampling and banking in clinical genetics and genetic research', New Genetics and Society, 20:1, 59-68.
21. Beskow, L., Burke, W., Merz, J., Barr, P., Terry, S., Penchaszadeh, V., Gostin, L., Gwinn, M. and Khoury, M. (2001) 'Informed consent for population-based research involving genetics', Journal of the American Medical Association, 286:18, 2315-21.
22. Billings, P. (2000) 'Homecooked Eugenic', GeneLetter, 1:1 February.
23. Bindra, R., Heath, V., Liao, A., Spencer, K. and Nicolaides, K. (2002) 'One-stop clinic for assessment of risk for Trisomy 21 at 11-14 weeks: a prospective study of 15,030 pregnancies', Ultrasound in Obstetrics and Gynecology, 20: 219-25.
24. Black, E. (2003) 'We must keep eugenics away from genetics', Newsday, 15 October, p. A.31.
25. Bobrow, M. and Thomas, S. (2001) 'Patents in a genetic age', Nature, 409:6822, 763-4.
26. Bodmer, W. and Mackie, R. (1995) The Book of Man: The Quest to Discover Our Genetic Heritage, London, Acabus.
27. Boehringer, C. (1968) Das Medizinische Prisma, 4, Cystische Fibrose, von Guido Fanconi.
28. Bonnefort, J., Thuillier, L., Gigarel, N., Rochette, C., Briard, M. and Munnich, A. (1997) 'Prenatal diagnosis of cystic fibrosis', Pediatric Pulmonology, Supplement, 16:63-4.
29. Bourdieu, P. (1990) In Other Words. Essays towards a Reflexive Sociology. Collected and translated by Matthew Adamson, Cambridge: Polity.
30. Braude, P., Pickering, S., Flinter, F. and Mackie Ogilvie, C. (2002) 'Preimplantation genetic diagnosis', Nature Review Genetics, 3: 941-53.
31. Brock, D. (2002) 'Human cloning and our sense of self', Science, 296:5566, 314-6.
32. Brown, N., Rappert, B. and Webster, A. (eds) (2000) Contested Futures: A Sociology of Prospective Techno-science, Aldershot: Ashgate.
33. Brunger, F. and Lippman, A. (1995) 'Resistance and adherence to the norms of genetic counseling', Journal of Genetic Counselling, 4:3, 151.
34. Bury, M. (1982) 'Chronic illness as biographical disruption', Sociology of Health and Illness, 4:2, 167-82.
35. Bury, M. (2001) 'Illness narratives: facts or fiction?', Sociology of Health and Illness, 23:3, 263-85.
36. Busby, H. (2004) 'Blood donation for genetic research: what can we learn from donors' narratives?', in R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA, London: Routledge.
37. Cambrosio, A., Limoges, C. and Pronovost, D. (1990) 'Representing biotechnology:an ethnography of Quebec science policy', Social Studies of Science, 20:2, 195-227.
38. Caplan, A., McGee, G. and Magnus, D. (1999) 'What is immoral about eugenics?', British Medical Journal, 319: 1284.
39. Caulfield, T., Upshur, R. and Daar, A. (2003) 'DNA databanks and consent: a suggested policy option involving an authorization model', BMC Medical Ethics, 4:1.
40. Caygill, H. (2003) The Making of the Modern Body, Theory, Culture and Society Series, London: Sage.
41. Chakravarti, A. and Little, P. (2003) 'Nature, nurture and human disease', Nature, 421: 412-4.
42. Chapman, E. (2002) 'The social and ethical implications of changing medical technologies:the views of people living with genetic conditions', Journal of Health Psychology, 7:2, 195-206.
43. Chapple, J. (1992) 'Genetic screening: brave New World or the boys from Brazil?', British Journal of Hospital Medicine, 47:7, 487-9.
44. Charmaz, K. (1983) 'Loss of self: a fundamental form of suffering in the chronically ill', Sociology of Health and Illness, 5:2, 168-94.
45. Chiapello, E. and Fairclough, N. (2002) 'Understanding the new management ideology:a transdisciplinary contribution from critical discourse analysis and new sociology of capitalism', Discourse & Society, 13:2, 185-208.
46. Chief Medical Officer's Expert Group (2000) Stem Cell Research: Medical Progress with Responsibility, London: Department of Health.
47. Christian Medical Fellowship (2001) Genetics and Human Behaviour: The Ethical Context. Available at
48. Chrysanthou, M. (2002) 'Transparency and selfhood: utopia and the informed body', Social Science and Medicine, 54: 469-79.
49. Clarke, A. (1991) 'Is non-directive genetic counselling possible?', The Lancet, 338:998-1000.
50. Collins, H. and Evans, R. (2002) 'The third wave of science studies: studies of expertise and experience', Social Studies of Science, 32: 235-96.
51. Conrad, P. (1999) 'A mirage of genes', Sociology of Health and Illness, 21:2, 228-39.
52. Conrad, P. and Weinberg, D. (1996) 'Has the gene for alcoholism been discovered three times since 1980?', Perspectives On Social Problems, 8: 3-25.
53. Conrad, P. and Markens, S. (2001) 'Constructing the "gay gene" in the news: optimism and skepticism in the US and British press', Health, 5:3, 373-400.
54. Council of Europe (1997) Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, ETS no. 164., Oviedo, 4 April. Available at (accessed 12 January 2004).
55. Council of Europe Committee of Ministers (1997) Recommendation No R (97) 5 of the Committee of Ministers to Member States on the Protection of Medical Data. Available at (accessed 18 December 2003).
56. Cowen, L., Corey, M., Keenan, N., Simmons, R., Arndt, E. and Levison, H. (1985) 'Family adaptation and psychosocial adjustment to cystic fibrosis in the preschool child', Social Science and Medicine, 20:6, 553-60.
57. Cox, S. and McKellin, W. (1999) 'There's this thing in our family: predictive testing and the construction of risk for Huntington's Disease', in P. Conrad and P. Gabe (eds) Sociological Perspectives on the New Genetics, Oxford: Blackwell Publishers, 622-46.
58. Coyne, I. (1997) 'Chronic illness: the importance of support for families caring for a child with cystic fibrosis', Journal of Clinical Nursing, 6: 121-9.
59. Cragg Ross Dawson (2000) Public Perceptions of the Collection of Human Biological Samples: summary report, London: Wellcome Trust; Medical Research Council.
60. Cuckle, H. (2002) 'Growing complexity in the choice of Down's Syndrome screening policy', Ultrasound in Obstetrics and Gynecology, 19: 323-6.
61. Cunningham-Burley, S. and Kerr, A. (1999) 'Defining the "social": towards an understanding of scientific and medical discourses on the social aspects of the new human genetics', Sociology of Health and Illness, 21:5, 647-68.
62. Cyranoski, D. (2000) 'Singapore to create nationwide disease database', Nature, 407:6807, 935.
63. Davies, K. (1990) 'The search for the cystic fibrosis gene', CF News, Dec/Jan: 10-13.
64. Davies, P. (1991) 'Cystic fibrosis from bench to bedside', New England Journal of Medicine, 325: 575-7.
65. Davies, P. Drumm, M. and Konstan, M. (1996) 'Cystic fibrosis', American Journal of Respiratory and Critical Care Medicine, 154: 1229-56.
66. Davison, A., Barns, I. and Schibeci, R. (1997) 'Problematic publics: a critical review of surveys of public attitudes to biotechnology', Science, Technology and Human Values, 22:3, 317-48.
67. Department of Health (2003a) Our Inheritance, Our Future: Realizing the Potential of Genetics in the NHS, Norwich: HMSO.
68. Department of Health (2003b; draft) Research Governance Framework for Health and Social Care, Department of Health. Available at (accessed 5 November 2003).
69. Dodge, J. and Ryley, H. (1982) 'Screening for cystic fibrosis', Archives of Disease in Childhood, 57:10, 774-80.
70. Dodge, J. and Ryley, H. Morison, S., Lewis, P., Coles, E., Geddes, S., Russell, G., et al. (1997) 'Incidence, population and survival of CF in the UK 1968-95', Archives of Disease in Childhood, 77: 493-6.
71. Dreidger, D. (1989) The Last Civil Rights Movement, London: Hurst & Co.
72. Dunkerley, D. and Glasner, P. (1998) 'Empowering the public? Citizens' juries and the new genetic technologies', Critical Public Health, 8: 181-92.
73. Durant, J. and Hansen, A. (1995) 'The role of the media', in W. Kennet (ed.) Parliaments and Screening. A conference on the Ethical and Social Problems Arising from Testing and Screening for HIV and AIDS. The role of Parliaments and the Media. Conference Report and Studies of the Handling of Bioethics in the Twelve National Parliaments of the European Union, London: John Libby Eurotext.
74. Einsiedel, E. (2002) 'Assessing a controversial medical technology: Canadian public consultations on xenotransplantation', Public Understanding of Science, 11:4, 315-31.
75. Eliasoph, N. (1998) Avoiding Politics: How Americans Produce Apathy in Everyday Life, Cambridge: Cambridge University Press.
76. Engelhardt, H. (2002) 'Germline engineering: the moral challenges', American Journel of Medical Genetics, 108: 169-75.
77. Evans, G. and Durant, J. (1995) 'The relationship between knowledge and attitudes in the public understanding of science in Britain', Public Understanding of Science, 4: 57-74.
78. Ewbank, J. (1998) 'Problems of germline therapy', Nature, 392, 66-77, 16 April 1998, 645.
79. Fears, R. and Poste, G. (1999) 'Building population genetics using the UK NHS', Science, 284: 267-8.
80. Ferguson, M., Gartner, A. and Lipsky, D. (2000) 'The experience of disability in families:a synthesis of research and parent narratives', in E. Parens and A. Asch (eds), Prenatal Testing and Disability Rights, Washington, DC: Georgetown University Press, 72-94.
81. Finkler, K. (2000) Experiencing the New Genetics: Family and Kinship on the Medical Frontier, Philadelphia, PA: University of Pennsylvania Press.
82. Finkler, K. Skrzynia, C. and Evans, J. (2003) 'The new genetics and its consequences for family, kinship, medicine and medical genetics', Social Science and Medicine, 57:403-12.
83. Fleischer, M. (2001) 'Patent thyself', The American Lawyer, 21 June.
84. Franklin, S. (1997) Embodied Progress: A Cultural Account of Assisted Conception, London: Routledge.
85. Franklin, S. (2001) 'Culturing biology: cell lines for the second millennium', Health, 5:3, 335-54.
86. Franklin, S. and Roberts, C. (2001) 'The social life of the embryo', paper presented at 'Ethnographies of the Centre', Lancaster University. Available at _http:// www.comp.lancs.ac.uk/sociology/iht/eofcpaper.htm_ (accessed 12 January 2004).
87. Fujimura, J. (1997) 'The practices of producing meaning in bioinformatics', Sociology of the Sciences, 21: 49-88.
88. Fujimura, J. (1998) 'The molecular bandwagon in cancer research: where social worlds meet', Social Problems, 35: 261-83.
89. Fukuyama, F. (2002) Our Posthuman Future: Consequences of the Biotechnology Revolution, New York: Picador.
90. General Medical Council (2000) Confidentiality: Protecting and Providing Information. Available at (accessed 5 November 2003).
91. Genetic Interest Group (1999) Genetic Testing, Screening and Eugenics', Genetic Interest Group Policy Paper. November. Available at (accessed 5 January 2004).
92. GeneWatch UK (2001) Comments on the Report of the UK Population Biomedical Collection Protocol Development Workshop, Buxton, UK: GeneWatch.
93. Gibson, L. and Cooke, R. (1959) 'A test for concentration of electrolytes in sweat in cystic fibrosis of the pancreas utilizing pilocarpine by iontophoresis', Pediatrics, 23:545-9.
94. Giddens, A. (1990) The Consequences of Modernity, Cambridge: Polity Press.
95. Glasner, P. (2001) 'Rights or rituals? Why juries can do more harm than good', PLA Notes, 40: 43-5.
96. Golinski, J. (1998) Making Natural Knowledge: Constructivism and the History of Science, Cambridge: Cambridge University Press.
97. Gordon, J. (1999) 'Genetic advancement in humans', Science, 283: 2023-4.
98. Gottweis, H. (2002) 'The governance of genomics', Critical Public Health, 12:3, 207-20.
99. Greely, H. (1999) 'Breaking the stalemate: a prospective regulatory framework for unforeseen research uses of human tissue samples and health information', Wake Forest Law Review, 34: 737-66.
100. Green, J. (1995) 'Obstetricians' views on prenatal diagnosis and termination of pregnancy:1980 compared with 1993', British Journal of Obstetrics and Gynaecology, 102:228-32.
101. Green, S. (2003) ' "What do you mean 'what's wrong with her?' ": stigma and the lives of families of children with disabilities', Social Science and Medicine, 57:8, 1361-74.
102. Habermas, J. (2002) The Future of Human Nature, Cambridge: Polity Press.
103. Hall, S. (1996) 'Introduction: who needs identity?', in S. Hall and P. Du Gay (eds) Questions of Cultural Identity, London: Sage: 1-17.
104. Hallowell, N. (1999) 'Doing the right thing: genetic risk and responsibility', Sociology of Health and Illness, 21:5, 597-621.
105. Hallowell, N. and Richards, M. (1997) 'Understanding life's lottery: an evaluation of studies of genetic risk awareness', Journal of Health Psychology, 2:1, 31-43.
106. Hallowell, N. and Lawton, J. (2002) 'Negotiating present and future selves: managing the risk of hereditary ovarian cancer by prophylactic surgery', Health, 6:4, 423-43.
107. Harris, J. (1993) 'Is gene therapy a form of eugenics?', Bioethics, 7:2-3, 178-87.
108. Health and Social Care Act 2001, (c. 15) London: The Stationary Office Ltd, HMSO.
109. Hoeyer, K. (2002) 'Conflicting notions of personhood in genetic research', Anthropology Today, 18:5, 9-13.
110. Hoeyer, K. (2004) 'Ambiguous gifts. Public anxiety, informed consent and commercial genetic biobank research', in R. Tutton and O. Corrigan (eds) Genetic Databases:Socio-Ethical Issues in the Collection and Use of DNA, London: Routledge, chapter 6, 97-116.
111. Holtzman, N. and Rothstein, M. (1992) 'Eugenics and genetic discrimination', invited editorial, American Journal of Human Genetics, 50: 457-9.
112. Holtzman, N. and Rothstein, M. and Shapiro, D. (1998) 'Genetic testing and public policy', British Medical Journal, 316: 852-6.
113. House of Lords Select Committee on Science and Technology (2000) Science and Society, Third Report, Session 1999-2000. HL Paper 38, London: The Stationery Office. Available at (accessed 22 December 2003).
114. Hubbard, R. (1997) 'Abortion and disability: who should and who should not inhabit the world?', in L. Davis (ed.) The Disability Studies Reader, New York:Routledge.
115. Hubbard, R. and Newman, S. (2002) 'Yuppie eugenics: creating a world with genetic have and have-nots', Z Magazine, March. Available at (accessed 5 January 2004).
116. HUGO Ethics Committee (1998) Statement on DNA Sampling: Control and Access, London: Human Genome Organisation. Available at (accessed 5 November 2003).
117. Human Fertilisation and Embryology Authority (2003) Sex Selection: Options for Regulation. London: Human Fertilisation and Embryology Authority. Available at (accessed 5 January 2004).
118. Human Genetics Commission (2002) Inside Information: Balancing Interests in the Use of Personal Genetic Data, London: Department of Health.
119. Human Genetics Commission (2003) Insurance, Genetics and Fairness - What Next After the Moratorium?, Joint Meeting of Human Genetics Commission and Genetics and Insurance Committee, London, 22 September 2003. Available at (accessed 22 December 2003).
120. Irwin, A. (2001) 'Constructing the scientific citizen: science and democracy in the biosciences', Public Understanding of Science, 10: 1-18.
121. Irwin, A. and Michael, M. (2003) Science, Social Theory and Public Knowledge, Maidenhead:Open University Press; McGraw-Hill.
122. Jallinoja, P. (2001) 'Genetic screening in maternity care: preventive aims and voluntary choices', Sociology of Health and Illness, 23:3, 286-307.
123. Jasanoff, S. (1990) The Fifth Branch: Science Advisors as Policymakers, Cambridge, MA:Harvard University Press.
124. Irwin, A. (2003) 'Breaking the waves in science studies: comment on H.M. Collins and Robert Evans, "The Third Wave of Science Studies" ', Social Studies of Science, 33:3, 389-400.
125. Johanson, R., Burr, R., Leighton, N. and Jones, P. (2000) 'Informed choice? Evidence of the persuasive power of professionals', Journal of Public Health Medicine, 22:3, 439-40.
126. Kaplan, J. (2000) The Limits and Lies of Human Genetic Research Dangers for Social Policy, New York: Routledge.
127. Kass, L. (2003) 'Ageless bodies, happy souls: biotechnology and the pursuit of perfection', The New Atlantis, 1: 1-11.
128. Kaye, H. (1997) The Social Meaning of Modern Biology: From Social Darwinism to Sociobiology, New Brunswick, NJ: Transaction.
129. Kaye, J. and Martin, P. (2000) 'Safeguards for research using large scale DNA collections', British Medical Journal, 321:7269, 1146-8.
130. Keller, E. (1985) Reflections on Gender and Science, New Haven: Yale University Press.
131. Keller, E. (2000) The Century of the Gene, Cambridge, MA: Harvard University Press.
132. Kelly, S. (2003) 'Public bioethics and publics: consensus, boundaries and participation in biomedical science policy', Science, Technology & Human Values, 28:3, 339-64.
133. Kenen, R., Ardern-Jones, A. and Eeles, R. (2003) 'Living with chronic risk: healthy women with a family history of breast/ovarian cancer', Health Risk and Society, 5:3, 315-32.
134. Kerr, A. (2000) '(Re)constructing genetic disease: the clinical continuum between cystic fibrosis and male infertility', Social Studies of Science, 30:6, 847-94.
135. Kerr, A. (2003) 'Rights and responsibilities in the new genetics era', Critical Social Policy, 23:2, 208-26.
136. Kerr, A. and Cunningham-Burley, S. (2000) 'On ambivalence and risk: reflexive modernity and the new human genetics', Sociology, 34:2, 283-304.
137. Kerr, A. and Shakespeare, T. (2002) Genetic Politics: From Eugenics to Genome, Cheltenham: New Clarion Press.
138. Kerr, A. Cunningham-Burley, S. and Amos, A. (1998a) 'Eugenics and the new genetics in Britain: examining contemporary professionals' accounts', Science, Technology & Human Values, 23:2, 175-98.
139. Kerr, A. (1998b) 'Drawing the line: an analysis of lay people's discussions about the new human genetics', Public Understanding of Science, 7:2, 113-33.
140. Kerr, A. (1998c) 'The new human genetics and health: mobilising lay expertise', Public Understanding of Science, 7:1, 41-60.
141. Kevles, D. (1995) In the Name of Eugenics, Cambridge, MA: Harvard University Press.
142. Kitzinger, J. and Williams, C. (2004) 'Colonising the future: legitimising hope and calming fears in the embryo stem cell debate', paper presented at 'First Lancaster-Cardiff CESAGen International Conference: Genomics and Society', London, 2-3 March.
143. Kleinman, D.L. (1998) 'Untangling Context: understanding a university laboratory in the commercial world', Science, Technology & Human Values, 23:3, 285-314.
144. Koch, L. and Stemerding, D. (1994) 'The sociology of entrenchment: a cystic fibrosis test for everyone?', Social Science and Medicine, 39:9, 1211-20.
145. Kulczycki, L. and MacLeod, K. (1961) 'Cystic fibrosis: a community challenge', Public Health Reports, 76: 85-90.
146. Lane, B., Williamson, P., Dodge, J.A., Harris, H., Super, M. and Harris, R. (1997) 'Confidential inquiry into families with two siblings with cystic fibrosis', Archives of Diseases in Childhood, 77, 501-3.
147. Lambert, H. and Rose, H. (1996) 'Disembodied knowledge? Making sense of medical knowledge', in A. Irwin and M. Michael (eds) Misunderstanding Science: Making Sense of Science and Technology within Everyday Life, Cambridge, MA: Cambridge University Press, 65-83.
148. Larson, E. (1998) 'Reframing the meaning of disability to families: the embrace of paradox', Social Science and Medicine, 47: 865-75.
149. Latour, B. (2000) 'When things strike back: a possible contribution of "science studies" to the social sciences', British Journal of Sociology, 1:5, 107-23.
150. Latour, B. (2003) 'Is re-modernization occuring - and if so, how to prove it? A commentary on Ulrich Beck', Theory, Culture and Society, 20:2, 35-48.
151. Lavery, S., Aurell, R., Turner, C., Castello, C., Veiga, A., Barri, P. and Winston, R. (2002) 'Preimplantation genetic diagnosis: patients' experiences and attitudes', Human Reproduction, 17:9, 2464-67.
152. Lawton, J. (2003) 'Lay experiences of health and illness: past research and future Agendas', Sociology of Health and Illness, 25:3, 23-40.
153. Lenaghan, J. (1999) Brave New NHS? The Impact of the New Genetics on the Health Service, London: IPPR.
154. Levitas, R. (1990) The Concept of Utopia, New York: Philip Allan.
155. Lewontin, R.C. (1991) The Doctrine of DNA: Biology as Ideology, London: Penguin.
156. Lippman, A. (1986) 'Access to prenatal screening: who decides?', Canadian Journal of Women and the Law, 1:2, 434-5.
157. Lippman, A. (1991) 'Prenatal genetic testing and screening: constructing needs and reinforcing inequities', American Journal of Law and Medicine, 17: 15-50.
158. Lippman, A. (1999a) 'Choice as a risk to women's health', Health, Risk and Society, 1:3, 281-92.
159. Lippman, A. (1999b) 'Prenatal diagnosis', American Journal of Public Health, 89:10, 1592.
160. Lowe, C., May, C. and Reed, S. (1949) 'Fibrosis of pancreas in infants and children; a statistical study of clinician and hereditary features', American Journal of Diseases of Children, 78: 349-74.
161. Lowton, K. and Gabe, J. (2003) 'Life on a slippery slope: perceptions of health in adults with cystic fibrosis', Sociology of Health and Illness, 25:4, 281-319.
162. Lyttle, J. (1997) 'Is informed consent possible in the rapidly evolving world of DNA sampling?', Canadian Medical Association Journal, 156:2, 257-8.
163. McGee, G. (1997) The Perfect Baby: A Pragmatic Approach to Genetics, London:Rowman & Littlefield.
164. McGue, M. and Bouchard, T.J. Jr (1998) 'Genetic and environmental influences on human behavioral differences', Annual Review of Neuroscience, 21: 1-24.
165. McInnis, M. (1999) 'The assent of a nation: genethics and Iceland', Clinical Genetics, 55: 234-9.
166. McQueen, M. (1998) 'Ethical and legal issues in the procurement, storage and use of DNA', Clinical Chemistry and Laboratory Medicine, 36:8, 54-9.
167. Mann, C. (1994) 'Behavioural genetics in transition', Science, 264: 1686-9.
168. Marteau, T. and Richards, M. (1996) The Troubled Helix: Social and Psychological Implications of the New Human Genetics, Cambridge, MA: Cambridge University Press.
169. Marteau, T. and Richards, M. and Croyle, R. (1998) 'Psychological responses to genetic testing', British Medical Journal, 316:7132, 693-8.
170. Marteau, T. and Richards, M. and Dormandy, E. (2001) 'Facilitating informed choice in prenatal testing: how well are we doing?', American Journal of Medical Genetics, 106: 185-90.
171. Marteau, T. and Richards, M. Plenicar, M. and Kidd, J. (1993) 'Obstetricians presenting amniocentesis to pregnant women: practice observed', Journal of Reproductive and Infant Psychology, 11:1, 3-10.
172. Martin, P. (1999) 'Genes as drugs: the social shaping of gene therapy and the reconstruction of genetic disease', Sociology of Health and Illness, 21:5, 517-38.
173. Medical Research Council (2001) Human Tissue and Biological Samples for use in Research: operational and ethical guidelines, MRC Ethics Series, London: Medical Research Council.
174. Meek, J. (2002) 'Decode was meant to save lives... now it's destroying them', The Guardian, 31 October.
175. Merchant, C. (1980) The Death of Nature: Women, Ecology, and the Scientific Revolution, San Francisco: Harper and Row.
176. Merz, J. (1997) 'Psychosocial risks of storing and using human tissues in research', Risk, Health, Safety and Environment, 8: 235-48.
177. Marteau, T. and Richards, M. Magnus, D., Cho, M. and Caplan, A. (2002) 'Protecting subjects' interests in genetics research', American Journal of Human Genetics, 70: 965-71.
178. MORI (1999) Public Support for Controversial Technologies Could Increase if Applications are Explained. Available at (accessed 23 December 2003).
179. MORI (2000) Genetics Poll Shows Public's Confusion 12th March 2000 Available at _http://www.mori.com/polls/2000/action.shtml> (accessed 12 January 2004).
180. Morris, J. (ed.) (1996) Encounters with Strangers Feminism and Disability, London: The Women's Press.
181. Mulderij, K. (1996) 'Research into the lifeworld of physically disabled children', Child care, Health and Development, 22:5, 311-22.
182. Mulkay, M. (1997) The Embryo Research Debate: Science and the Politics of Reproduction, Cambridge: Cambridge University Press.
183. Murray, J. and Cornell, C. (1981) 'Parentalplegia', Psychology in Schools, 18: 201-207.
184. National Screening Committee (2003) Antenatal Screening for Down's Syndrome - National Guidance on Policy and Quality Management. Available at (accessed 3 November 2003).
185. Nelkin, D. (2001) 'Anything for an edge: breeding a race of champions by germline', Times Literary Supplement, 19 October.
186. Nelkin, D. and Lindee, M. (1995) The DNA Mystique: The Gene as a Cultural Icon, New York: Freeman.
187. Nerlich, B. and Clarke, D. (2003) 'Anatomy of a media event: how arguments clashed in the 2001 human cloning debate', New Genetics and Society, 22:1, 43-60.
188. Nerlich, B. and Clarke, D. Clarke, D. and Dingwall, R. (1999) 'The influence of popular cultural imagery on public attitudes towards cloning', Sociological Research Online, 4:3. Available at (accessed 18 December 2003).
189. Nerlich, B., Dingwall, R. and Clarke, D. (2002) 'The book of life: how the completion of the Human Genome Project was revealed to the public', Health, 6:4, 445-69.
190. Novas, C. and Rose, N. (2000) 'Genetic risk and the birth of the somatic individual', Economy and Society, special issue on Configurations of Risk, 29:4, 484-513.
191. Office of Science and Technology (2000) Excellence and Opportunity: A Science and Innovation Policy for the 21st Century, Stationery Office Ltd. Available at (accessed 22 December 2003).
192. Office of Science and Technology and The Wellcome Trust (2000) Science and the Public:A Review of Science Communication and Public Attitudes to Science in Britain. Available at (accessed 22 December 2003).
193. Pálsson, G. and Harbardóttir, K. (2002) 'For whom the cell tolls: debates about Biomedicine', Current Anthropology, 43:2, 271-301.
194. Parens, E. and Asch, A. (eds) (2000) Prenatal Testing and Disability Rights, Hastings Center Studies in Ethics, series edited by M. Hanson and D. Callaman, Washington, DC: Georgetown University Press.
195. Parsons, E. and Atkinson, P. (1992) 'Lay constructions of genetic risk', Sociology of Health and Illness, 14: 439-55.
196. Paul, D. (1992) 'Eugenic anxieties, social realities and political choices', Social Research, 59:3, 663-83.
197. Paul, D. (1998) Controlling Human Heredity: 1865 to the Present, Amhurst, NY:Humanity Press.
198. Pelchart, D., Lefebvre, H. and Perreault, M. (2003) 'Differences and similarities between mothers' and fathers' experiences of caring for a child with a disability', Journal of Child Health Care, 7:4, 231-47.
199. People Science and Policy Ltd. (2002) BioBank UK: A Question of Trust: A Consultation Exploring and Addressing Questions of Public Trust, London: Medical Research Council; Wellcome Trust.
200. Petersen, A. (1999) 'Counselling the genetically "at-risk": a critique of "non-directiveness" ', Health Risk and Society, 1:3, 253-66.
201. Petersen, A. (2002) 'Replicating our bodies, losing our selves: news media portrayals of human cloning in the wake of Dolly', Body & Society, 8:4, 71-90.
202. Petersen, A. and Bunton, R. (2002) The New Genetics and the Public's Health, London:Routledge.
203. Rabeharisoa, V. and Callon, M. (2002) 'The involvement of patients' associations in research', International Social Science Journal, 54:1, 57-67.
204. Rabinow, P. (1996) Essays on the Anthropology of Reason, Chichester, NJ: Princeton University Press.
205. Rabinow, P. (1999) French DNA: trouble in purgatory, Chicago, IL: University of Chicago Press.
206. Rapp, R. (1994) 'Women's responses to prenatal diagnosis: a sociocultural perspective on diversity', in K. Rothenberg and E. Thomson (eds) Women and Prenatal Testing: facing the challenges of technology, Columbus, OH: Ohio State University Press, 219-33.
207. Rabinow, P. (2000) Testing Women, Testing the Fetus, the social impact of amniocentesis in America, New York: Routledge.
208. Reilly, P. and Page, D. (1998) 'We're off to see the genome', Nature Genetics, 20, Sept., 15-17.
209. Reindal, S. (2000) 'Disability, gene therapy and eugenics - a challenge to John Harris', Journal of Medical Ethics, 26: 89-94.
210. Resnik, D. and Langer, P. (2001) 'Human germline gene therapy reconsidered', Human Gene Therapy, 12:11, 1449-58.
211. Reynolds, T. (2003) 'Down's Syndrome screening is unethical: views of today's research ethics committees', Journal of Clinical Pathology, 56: 268-70.
212. Rifkin, J. (2001) 'Will companies hold control of life made in a petri dish?', Los Angeles Times, 23 July. Available at (accessed 5 January 2004).
213. Rimmer, M. (2003) 'Myriad genetics: patent law and genetic testing', European Intellectual Property Law, 25:1, 20-33.
214. Roberts, L. (1988a) 'The race for the cystic fibrosis gene', Science, 240: 141-4.
215. Roberts, L. (1988b) 'The race for the cystic fibrosis gene nears end', Science, 240: 282-5.
216. Rock, P. (1996) 'Eugenics and euthanasia: a cause for concern for disabled people, particularly disabled women', Disability and Society, 11:1, 121-8.
217. Rommens, J., Iannuzzi, M., Kerem, B., Drumm, M., Melmer, G., Dean, M., Rozmahel, R., Cole, J., Kennedy, D., Hidaka, N., et al. (1989) 'Identification of the cystic fibrosis gene: chromosome walking and jumping', Science, 245:1059-65.
218. Rose, N. (2000) 'The biology of culpability: pathological identity and crime control in a biological culture', Theoretical Criminology, 4:1, 5-34.
219. Rose, N. (2001) 'The politics of life itself', Theory, Culture and Society, 18:6, 1-30.
220. Rothman, B. (1988) The Tentative Pregnancy: Amniocentesis and the Sexual Politics of Motherhood, London: Pandora.
221. Rose, N. (1998) Genetic Maps and Human Imaginations: The Limits of Science in Understanding Who We Are, New York: W. W. Norton and Co. Inc.
222. Rothstein, M. (2002) 'The role of IRB's in research involving commercial biobanks', Journal of Law, Medicine and Ethics, 30: 105-8.
223. Royal Society, The (2003) Royal Society National Forum for Science 2003 (People's Science Summit): Genetic Testing - Which Way Forward?, London: The Royal Society. Available at (accessed 18 December 2003).
224. Savulescu, J. (2001) 'Is current practice around late termination of pregnancy eugenic and discriminatory? Maternal interests and abortion', Journal of Medical Ethics, 27:165-71.
225. Savulescu, J. (2002) 'Deaf lesbians, "designer disability" and the future of medicine', British Medical Journal, 325: 771-3.
226. Shakespeare, T. (1995) 'Back to the future? New genetics and disabled people', Critical Social Policy, 44:5, 22-35.
227. Shakespeare, T. (1999) ' "Losing the plot?" Medical and activist discourses of contemporary genetics and disability', Sociology of Health and Illness, 21:5, 669-88.
228. Shakespeare, T. Gillespie-Sells, K. and Davies, D. (1996) The Sexual Politics of Disability:Untold Desires, London: Cassell.
229. Sharp, K. and Earle, S. (2002) 'Feminism, abortion and disability: irreconcilable differences?', Disability and Society, 7:2, 137-46.
230. Sharp, R. and Foster, M. (2002) 'Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska native populations', Environmental Health Perspectives, 110: suppl. 2, 145-8.
231. Shepherd, M., Hattersley, A. and Sparkes, A. (2000) 'Predictive genetic testing in diabetes: a case study of multiple perspectives', Qualitative Health Research, 10:2, 242-59.
232. Shiloh, S. (1996) 'Decision-making in the context of genetic risk', in T. Marteau and M. Richards (eds) The Troubled Helix: Social and Psychological Implications of the New Human Genetics, Cambridge: Cambridge University Press, 82-103.
233. Silver, L. (1997) Remaking Eden: Cloning and Beyond in a Brave New World, New York:Avon Books.
234. Smaglik, P. (2000) 'Tissue donors use their influence in deal over gene patent terms', Nature, 407:6806, 821.
235. Smith, C. (2002) 'The sequestration of experience: rights talk and moral thinking in "late modernity" ', Sociology, 36:1, 43-66.
236. Spencer, K., Coombes, E., Mallard, A. and Milford-Ward, A. (1992) 'Free beta human choriogonadotropin in Down's syndrome screening: a multicentre study of its role compared with other biochemical markers', Annals of Clinical Biochemistry, 29: 506-18.
237. Spencer, K., Spencer, C., Power, M., Dawson, C. and Nicolaides, K. (2003) 'Screening for chromosomal abnormalities in the first trimester using ultrasound and maternal serum biochemistry in a one-stop clinic: a review of three years prospective experience', British Journal of Obstetrics and Gynaecology, 110: 281-6.
238. Staley, K. (2001) Giving Your Genes to Biobank UK: Questions to Ask. Report for GeneWatch UK, Buxton: GeneWatch UK.
239. Staples, S. (2000) 'Human Resource: Newfoundland's 300-year-old genetic legacy has triggered a gold rush', Business Magazine, 17:3, 117-20.
240. Stegmayr, B. and Asplund, K. (2002) 'Informed consent for genetic research on blood stored for more than a decade: a population based study', British Medical Journal, 325:21, 634-5.
241. Stewart, J., Kendall, E. and Coote, A. (1995) A Citizens' Juries, London: Institute of Public Policy Research.
242. Stiker, H.-J. (1999) Corps Infirmes et Sociétés; trans. William Sayers (1999) A History of Disability, Ann Arbour, MI: University of Michigan Press.
243. Stock, G. (2002) Redesigning Humans: Our Inevitable Genetic Future, New York:Houghton Mifflin.
244. Stockdale, A. (1999) 'Waiting for the cure: mapping the social relations of human gene therapy research', Sociology of Health and Illness, 21:5, 579-96.
245. Sulston, J. and Ferry, G. (2002) The Common Thread: A Story of Science, Politics, Ethics and the Human Genome, London: Bantam Press.
246. Super, M. (1992) 'Milestones in cystic fibrosis', British Medical Bulletin, 48:4, 717-37.
247. Taanila, L., Syrjälä, J., Kokkonen, J. and Järvelin, M-R. (2002) 'Coping of parents with physically and/or intellectually disabled children', Child Care, Health and Development 28:1, 73-86.
248. Tanner, J. (2002) 'Parental separation and divorce: can we provide an ounce of prevention?', Pediatrics, November.
249. Tauber, A. and Sarkar, S. (1992) 'The Human Genome Project: has blind reductionism gone too far', Perspectives in Biology and Medicine, 35:2, 220-35.
250. Thomas, C. (1999) Female Forms Experiencing and Understanding Disability, Oxford:Oxford University Press.
251. Thompson, R., Gil, K., Gustafson, K., George, L., Keith, B., Spock, A. and Kinney, T. (1994) 'Stability and change in the psychological adjustment of mothers of children and adolescents with cystic fibrosis and sickle cell disease', Journal of Pediatric Psychology, 19: 171-88.
252. Thompson, R., Hodges, K. and Hamlett, K. (1990) 'A matched comparison of adjustment in children with Cystic Fibrosis and psychiatrically referred and nonreferred children', Journal of Pediatric Psychology, 15: 745-9.
253. Thomson, M. (1998) The Problem of Mental Deficiency: Eugenics, Democracy and Social Policy in Britain c. 1870-1959, Oxford: Clarendon Press.
254. Trombley, S. (1988) The Right to Reproduce: A History of Coercive Sterilization, London:Weidenfeld and Nicolson.
255. Turner, G. and Wynne, B. (1992) 'Risk communication', in J. Durant (ed.) Biotechnology in Public: A Review of Recent Research, London: Science Museum, 109-41.
256. UK Stem Cell Bank Steering Committee. Available at _http://www.mrc. ac.uk/index/strategy-strategy/strategy-science:strategy/strategy-strategy_ implementation/strategy-government_spending_review_initiatives/strategystem_ cells/strategy-stem_cell_governance/public-stemcell_governance: steering.htm#anch-public-stemcell_governance:steering-Anchor1 > (accessed 22 December 2003).
257. Van Dijck, J. (1998) Imagenation: Popular Images of Genetics, London: Macmillan.
258. Verity, C. and Nicoll, A. (2002) 'Consent, Confidentiality and the Threat to Public Health Surveillance', British Medical Journal, 324: 1210-13.
259. Ville, I., Ravaauld, J., Diard, C. and Paicheler, H. (1994) 'Self-representations and physical impairment: a social constructivist approach', Sociology of Health and Illness, 16: 301-21.
260. Wald, N., Hackshaw, A., Haddow, J., Palomaki, G. and Knight, G. (1993) 'Use of free _-hCG in Down's syndrome screening', Annals of Clinical Biochemistry, 30: 512-18.
261. Wald, N., Kennard, A., Hackshaw, A. and McGuire, A. (1998) 'Antenatal screening for Down's Syndrome', Health Technology Assessment Report, 2:1.
262. Wald, N., Rodeck, C., Hackshaw, A., Walters, J., Chitty, L. and Mackinson, A. (2003) 'First and second trimester antenatal screening for Down's syndrome: the results of the Serum, Urine and Ultrasound Screening Study (SURUSS)', Health Technology Assessment, 7:11, 51 pages.
263. Waldby, C. (2002) 'Stem cells, tissue cultures and the production of biovalue', Health, 6:3, 305-24.
264. Walsh, V. (2002) 'Biotechnology and the UK 2000-05: globalization and innovation', New Genetics and Society, 21:2, 149-76.
265. Warner, M. (2002) Publics and Counterpublics, New York: Zone Books.
266. Webster, A. (2002) 'Innovative Health Technologies and the social: redefining health, medicine and the body', Current Sociology, 50:3, 443-57.
267. Webster, A. and Nelis, A. (1999) 'Regulating the gene: from genetic consumption to regulatory trust', Health, Risk and Society, 1:3, 301-12.
268. Wellcome Trust, The (1998) Public Perspectives on Human Cloning: A Social Research Study, London: The Wellcome Trust. Available at (accessed 23 December 2003).
269. Welsh Institute for Health and Social Care (1998) What Conditions Should Be Fulfilled Before Genetic Testing for Susceptibility to Common Diseases Becomes Widely Available on the NHS?, Pontypridd: University of Glamorgan. Available at (accessed 22 December 2003).
270. Welshman, J. (1996) 'In search of the "problem family": public health and social work in England and Wales 1940-70', Social History of Medicine, 9:3, 447-65.
271. Whittle, M. (2001) 'Down's Syndrome screening: where to now?', British Journal of Obstetrics and Gynaecology, 108: 544-61.
272. WHO (1998) 'Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services'. Report of a WHO Metting on Ethical Issues in Medical Genetics, Geneva, 15-16 December 1997, World Health Organization, Geneva.
273. Wieting, S. (2002) 'Public and private priorities in managing time in genetic research: the Icelandic deCode case', Symbolic Interaction, 25:3, 271-87.
274. Wilkie, T. (1993) Perilous knowledge, London: Farbes and Farber.
275. Williams, C., Alderson, P. and Farsides, B. (2002a) ' "Drawing the line" in prenatal screening and testing: health practitioners' discussions', Health, Risk and Society, 4: 61-75.
276. Williams, C., Alderson, P. and Farsides, B. (2002b) 'Too many choices? Hospital and community staff reflect on the future of prenatal screening', Social Science and Medicine, 55: 743-53.
277. Williams, C., Kitzinger, J. and Henderson, L. (2003) 'Envisaging the embryo in stem cell research: rhetorical strategies and media reporting of the ethical debates', Sociology of Health and Illness, 25:7, 793-814.
278. Williams, G. (1984) 'The genesis of chronic illness: narrative reconstruction', Sociology of Health and Illness, 6:2, 175-200.
279. Winston, R. and Hardy, K. (2002) 'Are we ignoring potential dangers of in vitro fertilization and related treatment?', Nature Cell Biology and Nature Medicine Fertility Supplement, s14-18.
280. Woolgar, S. and Cooper, G. (1999) 'Do artefacts have ambivalence? Moses' bridges, winner's bridges and other urban legends in S and TS', Social Studies of Science, 29:3, 433-49.
281. World Medical Association (2002) Declaration on Ethical Considerations Regarding Health Databases. Available at _http://www.wma.net/e/policy/d1.htm> (accessed 10 November 2003).
282. Wright, S. (1986) 'Recombinant DNA technology and its social transformation, 1972-1982, OSIRIS, 2nd series, 2: 303-60.
283. Wynne, B. (1995) 'The public understanding of science', in S. Jasanoff, G. Markel, J. Petersen and T. Pinch (eds), Handbook of Science and Technology Studies, London:Sage, 361-88.
284. Wynne, B. (2003) 'Seasick on the Third Wave? Subverting the hegemony of propositionalism:response to Collins & Evans (2002)', Social Studies of Science, 33:3, 401-17.