Constructing participation in genetic databases: Citizenship, governance, and ambivalence

Science Technology and Human Values

Volumn 32, Issue 2, 2007, Pages 172-195

  Tutton, Richard ^a  

^a UNIVERSITY OF NOTTINGHAM   (United Kingdom)

Author keywords

Ambivalence; Biobanks; Citizenship; Genetic databases; Participation

Indexed keywords

EID: 33847617837     PISSN: 01622439     EISSN: 15528251     Source Type: Journal    
DOI: 10.1177/0162243906296853     Document Type: Article

References (77)

1. Alderson, P., B. Farsides, and C. Williams. 2002. Examining ethics in practice: Health service professionals' evaluations of in-hospital ethics seminars. Journal of Nursing Ethics 9 (5): 508-521.
2. Ashcroft, R., T. Goodenough, E. Williamson, and J. Kent. 2003. Children's consent to research participation: Social context and personal experience invalidate fixed cut off rules. American Journal of Bioethics 3 (4): 16-18.
3. Avon Longitudinal Study of Parents and Children. 2005. Avon Longitudinal Study of Parents and Children. Bristol, UK. http://www.alspac.bris.ac.uk (accessed March 15, 2005).
4. Barbour, V. 2003. UK Biobank: A project in search of a protocol? Lancet 361: 1734-1738.
5. Beck, U. 1997. The reinvention of politics: Rethinking modernity in the global social order. Cambridge: Polity.
6. Berg, K. 2001. DNA sampling and banking in clinical genetics and genetic research. New Genetics and Society 20 (1): 59-68.
7. Beskow, L. M., W. Burke, J. Merz, P. Barr, S. Terry, V. Penchaszadeh, L. Gostin, M. Gwinn, and M. Khoury. 2001. Informed consent for population-based research involving genetics. Journal of the American Medical Association 286 (18): 2315-2321.
8. Busby, H. 2004. Blood donation for genetic research: What can we learn from donor's narratives? In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 39-56. London: Routledge.
9. Caulfield, T., R. E. Upshur, and A. Daar. 2003. DNA databanks and consent: A suggested policy option involving an authorization model. BMC Medical Ethics 4 (1): 123-125.
10. Chadwick, R., and K. Berg. 2001. Solidarity and equity: New ethical frameworks for genetic databases. Nature Genetics 2: 318-321.
11. Chase, D., E. J. Tawn, L. Parker, P. Jonas, C. O. Parker, and J. Burn. 1998. North Cumbria Community Genetics Project. Journal of Medical Genetics 35 (5): 413-416.
12. Corrigan, O. 2004. Informed consent: The contradictory ethical safeguards in pharmacogenetics. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 78-96. London: Routledge.
13. Corrigan, O., and R. Tutton. 2006. What's in a name? Subjects, volunteers, participants and activists in clinical research. Clinical Ethics 1 (2): 101-104.
14. Cunningham-Burley, S., A. Kerr, and S. Pavis. 1999. Theorising subjects and subject matter in focus group research. In Developing focus group research: Politics, theory and practice, edited by R. Barbour and J. Kitzinger. London: Sage.
15. Devins, G. M. 1978. Some subjective reactions of a behavioural scientist involved in thanato-logical research. International Journal of Psychiatry Medicine 9 (3/4): 307-315.
16. Dunkerley, D., and P. Glasner. 1998. Empowering the public? Citizens' juries and the new genetic technologies. Critical Public Health (8): 181-192.
17. Ellis, P. M. 2000. Attitudes towards and participation in randomised clinical trials in oncology: A review of the literature. Annals of Oncology 11 (8): 939-945.
18. Eriksson, S. 2001. Informed consent and biobanks. In The use of human biobanks: Ethical, social, economical and legal aspects, edited by M. G. Hansson. Uppsala, Sweden: Uppsala University Press.
19. Estonian Genome Project. 2005. Estonian Genome Project. http://www.geenivaramu.ee (accessed March 18, 2005).
20. Fears, R., and G. Poste. 1999. Building population genetics using the UK NHS. Science 284: 267-268.
21. Genetic Interest Group. 2004. Academy of Medical Sciences study on the use of patient data in research: A submission from the Genetic Interest Group. http://www.gig.org.uk (accessed March 17, 2005).
22. Giddens, A. 1992. Modernity and self-identity: Self and society in the late modern age. London: Polity.
23. Goodenough, T., E. Williamson, J. Kent, and R. Ashcroft. 2003. "What did you think about that?" Researching children's perceptions of participation in a longitudinal genetic epidemiological study. Children and Society 17 (2): 113-125.
24. Haimes, E., and M. Whong-Barr. 2004. Levels and styles of participation in genetic databases: A case study of the North Cumbria Community Genetics Project. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 56-77. London: Routledge.
25. Ho, M-W., and N. Papadimitriou. 2002. Human DNA "biobanks" worthless. Institute of Science in Society. http://www.i-sis.org.uk/ DNAdatabaseproblems.php (accessed March 18, 2005).
26. Hoeyer, K. 2002. Conflicting notions of personhood in genetic research. Anthropology Today 18 (5): 9-13.
27. Hoeyer, K.. 2004. Ambiguous gifts: Public anxiety, informed consent and biobanks. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 97-116. London: Routledge.
28. Holstein, J., and J. Gubrium. 1995. The active interview. Thousand Oaks, CA: Sage.
29. Human Genetics Commission. 2002. Inside information: Balancing interests in the use of personal genetic data. London: Department of Health.
30. Irwin, A. 1995. Citizen science. London: Routledge.
31. Irwin, A.. 2001. Constructing the scientific citizen: Science and democracy in the biosciences. Public Understanding of Science 10 (1): 1-18.
32. Irwin, A., and M. Michael. 2003. Science, social theory and public knowledge. Milton Keynes, UK: Open University Press.
33. Kaiser, J. 2002. Population databases boom, from Iceland to US. Science 298: 1158-1161.
34. Kaye, J., and P. Martin. 2000. Safeguards for research using large scale DNA collections. British Medical Journal 321: 1146-1149.
35. Kerr, A., and S. Cunningham-Burley. 2000. On ambivalence and risk: Reflexive modernity and the new human genetics. Sociology 34 (2): 283-304.
36. Kerr, A., S. Cunningham-Burley, and A. Amos. 1997. The new genetics: Professionals' discursive boundaries. Sociological Review 45 (2): 279-303.
37. Kerr, A., S. Cunningham-Burley, and R. Tutton. in press. Shifting subject positions: Experts and lay people in public dialogue. Social Studies of Science.
38. Marinetto, M. 2003. Who wants to be an active citizen? The politics and practice of community involvement. Sociology 37 (1): 103-120.
39. Martin, P. 2001. Genetic governance: The risks, oversight and regulation of genetic databases in the UK. New Genetics and Society 20 (2): 157-184.
40. McInnis, M. G. 1999. The assent of a nation: Genethics and Iceland. Clinical Genetics 55: 234-239.
41. Merz, J., D. Magnus, M. K. Cho, and A. L. Caplan. 2002. Protecting subjects' interests in genetics research. American Journal of Human Genetics 70: 965-971.
42. Merz, J., G. E. McGee, and P. Sankar. 2004. "Iceland Inc"? On the ethics of commercial population genetics. Social Science and Medicine 58 (6): 1201-1209.
43. Mieszkowski, K. 2003. Economic success is in the genes. Guardian, 120-120.
44. MRC, Wellcome Trust, and Department of Health. 2002. A protocol for the UK Biobank: A study of genes, environment and health. http://www.ukbiobank.ac.uk (accessed July 23, 2004).
45. MRC, Wellcome Trust, and Department of Health. 2003. UK Biobank Ethics and Governance Framework, version 1.0. http://www.ukbiobank.ac.uk/ documents/egf-comment-version.doc (accessed July 23, 2004).
46. National Health Service. n.d. Make time for health. http://www.tvha.nhus.uk/maketime4health.html (accessed December 18, 2006).
47. National Institutes of Health. 2004. Request for information: Design and implementation of a large-scale prospective cohort study of genetic and environmental influences on common disease. http://www.nih.gov (accessed May 28, 2004).
48. People Science and Policy. 2002. BioBank UK: A question of trust: A consultation exploring and addressing questions of public trust. http://www.ukbiobank.ac.uk/documents/consultation.pdf (accessed July 23, 2004).
49. People Science and Policy. 2003. UK Biobank consultation on the ethics and governance framework. http://www.ukbiobank.ac.uk/documents/ people-science-policy.pdf (accessed July 23, 2004).
50. Petersen, A. 2004. Genetic citizenship and biobanks. Paper presented at The workshop Biobanks and the Transformation of Health Governance, University of Vienna, March 12-13.
51. Petersen, A., and R. Bunton. 2002. The new genetics and the public's health. London: Routledge.
52. Petersen, A., and D. Lupton. 1996. The new public health: Health and self in the age of risk. London: Sage.
53. Potts, J. 2002. At least give the natives glass beads: An examination of the bargain made between Iceland and DeCODE Genetics with implications for global bioprospecting. Virginia Journal of Law and Technology 8: 1-40.
54. Rendtorff, J. D. 2001. Biobanks and the rights to the human body. In The use of human biobanks: Ethical, social, economic and legal aspects, edited by M. G. Hansson, 55-60. Uppsala, Sweden: Uppsala University Press.
55. Rose, H. 2003. The rise and fall of UmanGenomics: The model biotech company? Nature 425: 123-124.
56. Rose, N. 1998. Inventing our selves: Psychology, power and personhood. Cambridge: Cambridge University Press.
57. Rose, N., and C. Novas. 2005. Biological citizenship. In Global assemblages: Technology, politics, and ethics as anthropological problems, edited by A. Ong and S. Collier. London: Blackwell.
58. Sade, R. M. 2002. Research on stored biological samples is still research. Archives of Internal Medicine 162: 1439-1440.
59. Salter, B., and M. Jones. 2005. Biobanks and bioethics: The politics of legitimation. Journal of European Public Policy 12 (4): 710-732.
60. Snaedal, J. 2002. The ethics of health sector databases. EHealth International 1 (6): 71-73.
61. Stegmayr, B., and K. Asplund. 2002. Informed consent for genetic research on blood stored for more than a decade: A population based study. British Medical Journal 325: 634-635.
62. Sainsbury seeks public view on bioscience. 1998. Times Higher Education Supplement, December 18, 2-2.
63. Turner, B. S. 2001. The erosion of citizenship. British Journal of Sociology 52 (2): 189-209.
64. Tutton, R. 2004. Persons, property and gift: Exploring languages of tissue donation to biomedical research. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 19-38. London: Routledge.
65. Tutton, R., and O. Corrigan. 2004. Introduction: Public participation in genetic databases. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 1-18. London: Routledge.
66. Tutton, R., J. Kaye, and K. Hoeyer. 2004. Governing UK Biobank: The importance of ensuring public trust. Trends in Biotechnology 22 (6): 284-285.
67. Tutton, R., A. Kerr, and S. Cunningham-Burley. 2005. Myriad stories: Constructing expertise and citizenship in discussions of the new genetics. In Science and citizens: Globalization and the challenge of engagement, edited by M. Leach, I. Scoones, and B. Wynne. London: Zed Press.
68. UK Biobank. 2005. UK Biobank. http://www.ukbiobank.ac.uk (accessed March 18, 2005).
69. Webster, A. 2002. Innovative health technologies and the social: Redefining health, medicine and the body. Current Sociology 50 (3): 443-457.
70. Weldon, Sue. 2004. "Public consent" or "scientific citizenship"? What counts as public participation in population based DNA collections? In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 161-180. London: Routledge.
71. Wendler, D. 2002. What research with stored samples teaches us about research with human subjects. Bioethics 16 (1): 33-54.
72. Wendler, D., and E. Emanuel. 2002. The debate over research on stored biological samples. Archives of Internal Medicine 162: 1458-1462.
73. Whong-Barr, M., and E. Haimes. 2003. Why say no? Reasons for non-participation in the North Cumbria Community Genetics Project. European Journal of Human Genetics 11 (supp. 1): 33-39.
74. Wilkinson, S. 1998. Focus group methodology: A review. International Journal of Social Research Methodology 1 (3): 181-203.
75. Williams, G., and D. Schroeder. 2004. Human genetic banking: Altruism, benefit and consent. New Genetics and Society 23 (1): 89-104.
76. Williamson, E., T. Goodenough, J. Kent, and R. Ashcroft. 2004. Children's participation in genetic epidemiology: Consent and control. In Genetic databases: Socio-ethical issues in the collection and use of DNA, edited by R. Tutton and O. Corrigan, 139-160. London: Routledge.
77. Wylie, J., and G. P. Mineau. 2003. Biomedical databases: Protecting privacy and promoting research. Trends in Biotechnology 21 (3): 13-116.