Mad scientists bend the frame of biobank governance in British Columbia

Journal of Public Deliberation

Volumn 5, Issue 1, 2009, Pages

  Walmsley, Heather L ^a  

^a LANCASTER UNIVERSITY   (United Kingdom)

Author keywords

Biobank governance; Deliberative democracy; Ethnography; Public engagement with science; Storytelling

Indexed keywords

EID: 68349150616     PISSN: None     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (65)

1. Abbot, A. 2003. DNA study deepens rift over Iceland's genetic heritage, Nature Biotechnology 421:678.
2. Barbour, V. 2003. UK Biobank: a project in search of a protocol? The Lancet 361.
3. Benjamin, W. 1970. Reflections: Essays, Aphorisms, Autobiographical Writings. New York: Schoken.
4. -. 1982. The Arcades Project. Cambridge: Harvard University Press, 1999.
5. -. 1999. Selected Writings Vol. 2, 1927-1934. Cambridge: Harvard University Press.
6. Buck-Morss, S. 1991. The Dialectics of Seeing, Walter Benjamin and the Arcades Project. Cambridge, Mass and London: MIT Press.
7. Burgess, M., and K. O'Doherty. 2007. Deliberative Public Engagement Related to Governing Biobanks: Final Report, CAE Electronic Working Paper Series.
8. CaliforniaSpeaks. 2007. The Public Weighs in on Current Health Care Reform Proposals: Highlights of August 11, 2007 Statewide Conversation, AmericaSpeaks.
9. Chadwick, R. 2001. "Informed consent and genetic research," in Informed Consent in Medical Research Edited by L. Doyal and J. Tobias. London: BMJ Books.
10. Cruikshank, J. 2000. The Social Life of Stories: Narrative and Knowledge in the Yukon Territory. Lincoln: University of Nebraska Press.
11. -. 2005. Do Glaciers Listen? Local Knowledge, Colonial Encounters, & Social Imagination. Vancouver: UBC Press.
12. Dryzek, J. S. 2000. Deliberative Democracy and Beyond: Liberals, Critics and Contestations. Oxford Political Theory. Oxford; New York: Oxford University Press.
13. Entman, R. M. 1993. Framing: Toward Clarification of a Fractured Paradigm, Journal of Communication 43:51-58.
14. Franklin, S., and C. Roberts. 2006. Born and Made: An Ethnography of Preimplantation Genetic Diagnosis. Information Series Princeton and Oxford: Princeton University Press.
15. Friedman, W. 2007. Reframing "Framing". Public Agenda: Centre for Advances in Public Engagement 1.
16. Fukuyama, F., and F. Furger. 2007. Beyond Bioethics: A Proposal for Modernizing the Regulation of Human Biotechnologies, Paul H. Nitze School of Advanced International Studies.
17. Goven, J. 2003. Deploying the consensus conference in New Zealand: democracy and de-problematization, Public Understanding of Science 12:423-440.
18. Habermas, J. 1996. Between Facts and Norms: Contributions to a Discourse Theory of Law and Democracy. Cambridge, Massachusetts: MIT Press.
19. Hapgood, R., D. Shickle, and A. Kent. 2001. Consultation with primary care health professionals on issues relating to the recruitment of patients to a DNA collection study. Prepared for the Wellcome Trust and Medical Research Council.
20. Harry, D., S. Howard, and B. L. Shelton. 2000. "Indigenous People, Genes and Genetics: What Indigenous People Should Know about Biocolonialism." Indigenous Peoples Council on Biocolonialism.
21. HMSO. 2000. House of Lords Select Committee on Science and Technology -Science and Society 3rd Report.
22. Irwin, A. 2001. Constructing the scientific citizen: science and democracy in the biosciences, Public Understanding of Science 10:1-18.
23. Joly, Y., and B. Knoppers. 2006. Pharmacogenomic data sample collection and storage: ethical issues and policy approaches, Pharmacogenomics 7:219-226.
24. Kaye, J. 2004. "Abandoning informed consent: the case for genetic research in population collections " in Genetic Databases: socio-ethical issues in the collection and use of DNA. Edited by R. Tutton and O. Corrigan. London: Routledge.
25. Kerr, A. 2003. Rights and Responsibilities in the New Genetics Era, Critical Social Policy 23.
26. Kerr, A., S. Cunningham-Burley, and R. Tutton. 2007. Shifting Subject Positions: Experts and Lay People in Public Dialogue, Social Studies of Science 37.
27. Kohn, M. 2000. Language, Power and Persuasion: Toward a Critique of Deliberative Democracy, Constellations 7:408.
28. Lakoff, G. 2004. Don't think of an elephant! Know your values and frame the debate. Vermont: Chelsea Green Publishing.
29. Lee, S. S.-J., J. Mountain, and B. A. Koenig. 2001. The Meanings of "Race" in the New Genomics: Implications for Health Disparities Research, Yale Journal of Health Policy, Law and Ethics 1:33-70.
30. Lock, M. 2005. Eclipse of the gene and the return of divination, Current Anthropology 46:47-70.
31. Loft, S., and H. Poulsen. 1996. Cancer risk and oxidative DNA damage in man, Journal of Molecular Medicine 74:297-312.
32. Longstaff, H., and M. Burgess. 2007. Recruiting for representation in public deliberation on the ethics of biobanks, W. Maurice Young Centre for Applied Ethics, University of British Columbia at www.gels.ethics.ubc.ca.
33. Ltd, P. S. a. P. 2002. Biobank UK: A Question of Trust: A consultation exploring and addressing questions of public trust. Report prepared for the Medical Research Council and the Wellcome Trust. . People Science and Policy Ltd.
34. MacNaghten, P., M. B. Kearnes, and B. Wynne. 2005. Nanotechnology, Governance and Public Deliberation: What Role for the Social Sciences? Science Communication 27:268-291.
35. Mannvernd. 2004. A landmark decision by the Icelandic Supreme Court: The Icelandic Health Sector Database Act stricken down as unconstitutional, Icelanders for Ethics in Science and Medicine.
36. Maschke, K. J. 2005. Navigating an ethical patchwork - human gene banks, Nature Biotechnology 23:539-545.
37. Merz, J., G. McGee, and P. Sankar. 2000. "Iceland Inc."? On the ethics of commercial population genomics, Social Science and Medicine 58.
38. Mouffe, C. 2002. "Politics and Passions: the stakes of democracy," in CSD Perspectives, London: University of Westminster.
39. Myhr, K. M., N. Grytten, J. H. Aarseth, and H. Nyland. 2006. The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis registry - a resource for clinical practise and research, Acta Neurologica Scandinavia 113:37-40.
40. Niemeyer, S. 2004. Deliberation in the Wilderness: Displacing Symbolic Politics, Environmental Politics 13:347-372.
41. O'Neill, O. 2001. Informed Consent and Genetic Information. Studies in History and Philosophy of Biological and Biomedical Sciences 32:689-704.
42. -. 2002. A Question of Trust: The BBC Reith Lectures 2002. Cambridge: Cambridge University Press.
43. Palsson, G., and P. Rabinow. 2001. The Icelandic genome debate, Trends in Biotechnology 19:166-171.
44. Pellizzoni, L. 2001. The Myth of the Best Argument: Power, Deliberation and Reason, British Journal of Sociology 52:59-86.
45. Petersen, A. 2005. Securing our genetic health: engendering trust in UK Biobank, Sociology of Health and Illness 27.
46. 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 40.
47. Rabinow, P., and N. Rose. 2006. Biopower Today, Biosocieties 1:195-217.
48. RAFI. 1997. The Human Tissue Trade: The Global Traffic and Market in Human Biomaterials.
49. Reardon, J. 2005. Race to the Finish: Identity and Governance in an Age of Genomics. Information Series. Princeton and Oxford: Princeton University Press
50. -. 2007. Democratic Mishaps: The Problem of Democratisation in a Time of Biopolitics, Biosocieties 2:239-256.
51. Research, O. L. 2003. Summary of the UK Biobank consultation on the Ethics and Governance Framework.
52. Roberts, J. M., and N. Crossley. 2004. "Introduction " in After Habermas: New Perspectives on the Public Sphere. Edited by J. M. Roberts and N. Crossley. Oxford: Blackwell.
53. Rose, N. 2007. The Politics of Life Itself: Biomedicine, Power and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press
54. Sanders, L. M. 1997. Against Deliberation, Political Theory 25:347-376.
55. Sigurdsson, S. 2001. Ying-yang genetics, or the HSD deCODE controversy, New Genetics and Society 20:103-117.
56. -. 2003. "Decoding Broken Promises," in Open Democracy, www.opendemocracy.net.
57. Stewart, K. 1996. A Space on the Other Side of the Road: Cultural Poetics in an "Other" America. Princeton: Princeton University Press.
58. Taussig, M. 2004. My Cocaine Museum. Chicago and London: University of Chicago Press.
59. Tuckman, B. W. 1965. Development sequences in small groups, Psychology Bulletin 63:384-99.
60. Wallace, H. 2005. The development of UK Biobank: Excluding scientific controversy from ethical debate, Critical Public Health 15.
61. Williams, G., and D. Schroeder. 2004. Human Genetic Banking: altruism, benefit and consent, New Genetics and Society 23:89-103.
62. Wolbring, G. 2005. The Triangle of Enhancement Medicine, Disabled People, and the New Concept of Health: A New Challenge for HTA, Health Research, and Health Policy. Alberta Heritage Foundation for Medical Research.
63. Wynne, B. 2008. "Update: A Quarter Century Retrospect," in Rationality and Ritual: The Windscale Inquiry and Nuclear Decisions in Britain 2nd edition. Edited by B. Wynne. London: Earthscan.
64. Young, I. M. 1996. "Communication and the Other: Beyond Deliberative Democracy," in Democracy and Difference: Contesting the Boundaries of the Political. Edited by S. Benhabib. Princeton: Princeton University Press.
65. -. 2001. Activist Challenges to Deliberative Democracy, Political Theory 29:670-690.