Assessing Deliberative Design of Public Input on British Columbia Biobanks
This chapter critically assesses the public deliberative methodologies used in British Columbia, which involved deliberative events spanning two weekends with 20–25 citizen-deliberators. The development of public and private genetic databases (biobanks) strains dominant understandings of health information privacy, consent to research participation, and responsibilities of the state for public health. This chapter presents an example of incorporating citizens’ views into the regulatory and institutional design of biobanks.
KeywordsDeliberation Biobanks Public engagement Informed consent Policy Research ethics
This research is part of the Genome Canada and Genome BC funded project, “Building a GE3LS Architecture” hosted at the University of British Columbia’s W. Maurice Young Centre for Applied Ethics (Principal Investigators M. Burgess, P. Danielson; Co-Investigators E. Levy, D. Weary). Additional funding for the BC Biobanking Deliberation was provided by Canadian Institutes of Health Research (CIHR) Ethics Office, CIHR Institute for Genetics, Canadian Biotechnology Secretariat, Canadian Tumor Repository Network, BC BioLibrary: Banking for Health (a MSFHR Technology/Methodology Platform), BC Cancer Agency Tumor Tissue Repository, Better Biomarkers of Acute and Chronic Allograft Rejection (Genome Canada), The James Hogg iCAPTURE Centre (St. Paul’s Hospital). The BC BioLibrary deliberation was also supported by a Genome BC in a Strategic Opportunities Fund competition.
The research described here as been developed by the “face-to-face” research team: D. Badulescu, M. Burgess, H. Davidson, D. Hartell, D. Laforce, H. Longstaff, S MacLean, K. O’Doherty, N. Preto, D. Secko, K. Taylor, H. Walmsley, E. Wilcox, with support from M. Warren. Financial support for the biobanks public deliberation was also supported by BC BioLibrary (MSFHR Platform), CIHR Ethics Office and Institute of Genetics, Canadian Biotechnology Secretariat, James Hogg iCAPTURE Centre, Canadian Tumour Repository Network and the BC Cancer Agency Tumour Tissue Repository. See http://gels.ethics.ubc.ca:8213/ge3ls-arch/face-to-face
- Ackerman, B., and J.S. Fishkin. 2004. Deliberation day. New Haven/London: Yale University Press.Google Scholar
- Avard, Denise, Lucie M. Bucci, Michael M. Burgess, Jane Kaye, Catherine Heeney, Yanick Farmer, and Anne Cambon-Thomsen. 2009. Public health genomics (PHG) and public participation: Points to consider. Journal of Public Deliberation 5(1): 1–21.Google Scholar
- Burgess, M.M., and J. Tansey. 2008. Democratic deficit and the politics of “informed and inclusive” consultation. In Hindsight and foresight on emerging technologies, ed. E. Einseidel and R. Parker, 275–288. Vancouver: UBC Press.Google Scholar
- Dryzek, John S. 2000. Deliberative democracy and beyond. Oxford: Oxford University Press.Google Scholar
- Fukuyama, F., and F. Furger. 2007. A proposal for modernizing the regulation of human biotechnologies. Hastings Center Report 37(4): 16–20.Google Scholar
- Fung, A. 2006. Varieties of participation in complex governance. Public Administration Review 66(1): 66–75. http://www3.interscience.wiley.com/journal/118561477/abstract. Accessed 15 Nov 2009.Google Scholar
- Gastil, John, and Peter Levine. 2005. The deliberative democracy handbook: Strategies for effective civic engagement in the twenty-first century. San Francisco: Jossey-Bass.Google Scholar
- House of Lords. 2000. Science and technology – Third report. Science and technology select committee, third report. London: HMSO.Google Scholar
- Keeney, Ralph L. 1992. Value focused thinking: A path to creative decision making, 16–22. Cambridge: Harvard University Press.Google Scholar
- Mouffe, C. 2002. Politics and passions: The stakes of democracy. London: Centre for the Study of Democracy Perspectives, University of Westminster.Google Scholar
- Organisation for Economic Co-Operation and Development (OECD). 2009. OECD guidelines on human biobanks and genetic research databases. http://www.oecd.org/dataoecd/41/47/44054609.pdf. Accessed 9 Jan 2010.
- Walmsley, H.L. 2009. Mad scientists bend the frame of biobank governance in British Columbia. Journal of Public Deliberation 5(1): Article 6.Google Scholar
- Warren, M.E. 2009. Two trust-based uses of mini-publics in democracy. American political science association meeting paper. http://ssrn.com/abstract=1449781.
- Wilcox, E.S. 2009. Does “Misinformation” matter? Exploring the roles of technical and conceptual inaccuracies in a deliberative public engagement on biobanks. MA. Thesis, Faculty of Graduate Studies, University of British Columbia, Vancouver, BC, Canada.Google Scholar