Democratic governance of genomics: the case of UK Biobank

References

• Bache, I., 2003. Governing through governance: education policy control under New Labour, Political Studies 51 (2003), pp. 300–314.
   Web of Science ®Google Scholar
• Bentham, J., 1960. A fragment on government. Oxford: Blackwell; 1960.
   Google Scholar
• Blaug, R., 2002. Engineering democracy, Political Studies 50 (1) (2002), pp. 102–116.
   Web of Science ®Google Scholar
• Bohman, J., and Rehg, W., 1997. "Introduction". In: Deliberative democracy: essays on reason and politics. Cambridge, MA: The MIT Press; 1997. pp. ix–xxx.
   Google Scholar
• Capps, B., Campbell, A. V., and Meulen, R. T., 2008. Access to the UK Biobank resource: concepts of the public interest and the public good. 2008, Commissioned Report [online]. Available from: http://www.egcukbiobank.org.uk/assets/vtx048965.pdf [Accessed 26 July 2011].
   Google Scholar
• Caulfield, T., and Knoppers, B. M., 2010. "Consent, privacy and research biobanks". 2010, Policy Brief No. 1. Genome Canada [online]. available from http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief.pdf [Accessed 26 July 2011].
   Google Scholar
• Dahl, R., 1989. Democracy and its critics. New Haven, CT: Yale University Press; 1989.
   Google Scholar
• Dryzek, J. S., 2002. Deliberative democracy and beyond. Oxford: Oxford University Press; 2002.
   Google Scholar
• Elcock, H., 2006. The public interest and public administration, Politics 26 (2) (2006), pp. 101–109.
   Web of Science ®Google Scholar
• Elger, B., 2010. Ethical issues of human genetic databases: a challenge to classical health research ethics?. Aldershot: Ashgate; 2010.
   Google Scholar
• Elster, J., 1997. "The market and the forum: three varieties of political theory". In: Bohman, J., and Rehg, W., eds. Deliberative democracy: essays on reason and politics. Cambridge, MA: The MIT Press; 1997. pp. 3–34.
   Google Scholar
• Ethics and Governance Council, 2007. UK Biobank ethics and framework. 2007, [online]. Available from: http://www.ukBiobank.ac.uk/docs/20071011_EGF_Version_3_1_0October_2007withTOR.pdf [Accessed 26 July 2011].
   Google Scholar
• Fortun, M., 2003. "Towards genomic solidarity: lessons from Iceland and Estonia". In: Open Democracy. 2003, 10 July [online]. Available from: http://www.opendemocracy.net/theme_9-genes/article_1344.jsp [Accessed 26 July 2011].
   Google Scholar
• Godfrey, K., 2003. Genetic databank launches ethical framework, British Medical Journal 327 (7417) (2003), 700.
   PubMedGoogle Scholar
• Habermas, J., 1996. Between facts and norms. Cambridge: Polity Press; 1996.
   Google Scholar
• Haddow, G., et al., 2007. Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal, Social Science & Medicine 64 (2007), pp. 272–282.
   PubMed Web of Science ®Google Scholar
• Haddow, G., et al., 2008. Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development, Critical Public Health 18 (2) (2008), pp. 139–149.
   Google Scholar
• Hawkins, A. K., and O'doherty, K., 2010. Biobank governance: a lesson in trust, New Genetics and Society 29 (3) (2010), pp. 311–327.
   Web of Science ®Google Scholar
• Hunter, K. G., and Laurie, G. T., 2009. "Involving publics in biobank governance: moving beyond existing approaches". In: Widdows, H., and Mullen, C., eds. The governance of genetic information: who decides?. Cambridge: Cambridge University Press; 2009. pp. 151–177.
   Google Scholar
• Janger, E. J., 2005. Genetic information, privacy and insolvency, Journal of Law, Medicine & Ethics 33 (1) (2005), pp. 79–88.
   PubMed Web of Science ®Google Scholar
• Jessop, B., 1998. The rise of governance and risks of failure: the case economic development, International Social Sciences Journal 155 (1998), pp. 30–45.
   Google Scholar
• Jordan, A., Wurzel, R. K.W., and Zito, A., 2005. The rise of “new” policy instruments in comparative perspective: has governance eclipsed government?, Political Studies 53 (3) (2005), pp. 477–496.
   Web of Science ®Google Scholar
• Kahn, J., 2006. "Patenting race in a genomic age". 2006, Working Paper No. 19, DIME Working Papers on Intellectual Property Rights [online]. Available from: http://www.dime-eu.org/files/active/0/kahnWP.pdf [Accessed 26 July 2011].
   Google Scholar
• Kooiman, J., 1993. Modern governance: new government–society interactions. London: Sage; 1993.
   Google Scholar
• Laurie, G., Bruce, A., and Lyall, C., 2009. "The role of values and interests in the governance of the life sciences: learning lessons from the “Ethics+” approach of UK Biobank". In: Lyall, C., Papaioannou, T., and Smith, J., eds. The limits to governance: the challenge of policy-making for the new life sciences. Aldershot: Ashgate; 2009. pp. 51–77.
   Google Scholar
• Levitt, M., 2005. UK Biobank: a model for public engagement?, Genomics, Society and Policy 1 (3) (2005), pp. 78–81.
   Google Scholar
• Lyall, C., and Tait, J., 2005. "Shifting policy debates and the implications for governance". In: New modes of governance. Aldershot: Ashgate; 2005. pp. 1–17.
   Google Scholar
• Lyall, C., Papaioannou, T., and Smith, J., 2009. Lyall, C., Papaioannou, T., and Smith, J., eds. The limits to governance. Aldershot: Ashgate; 2009.
   Google Scholar
• Macpherson, C. B., 1973. Democratic theory: essays in retrieval. Oxford: Clarendon Press; 1973.
   Google Scholar
• Medical Research Council and Wellcome Trust, 2002. Biobank UK: a question of trust. London: People Science and Policy Ltd; 2002. pp. 1–17.
   Google Scholar
• Mill, J. S., 1951. "Considerations on representative government". In: Acton, B., ed. Utilitarianism, on liberty and representative government. London: Dent; 1951.
   Google Scholar
• Palmer, L.I., 2005. Should liability play a role in social control of biobanks? Journal of Law, Medicine and Ethics, 33(1), 70–78..
   Google Scholar
• Papaioannou, T., 2002. "Benchmarking processes of CEEC's Centres of RTD: a case study methodology". In: Devai, K., Papanek, G., and Borsi, B., eds. A methodology for benchmarking RTD organisations in Central and Eastern Europe. Budapest: Budapest University of Technology and Economics; 2002. pp. 53–68.
   Google Scholar
• Parry, S., and Dupré, J., 2010. "Introducing nature after the genome". In: Parry, S., and Dupré, J., eds. Nature after the genome. Oxford: Blackwell; 2010. pp. 3–16.
   Google Scholar
• Petersen, A., 2007. Biobanks' “engagements”: engendering trust or engendering consent?, Genomics, Society and Policy 3 (1) (2007), pp. 31–43.
   Google Scholar
• Pierre, J., and Peters, B. G., 2000. Governance, politics and the state. Houndmills: Macmillan; 2000.
   Google Scholar
• Rhodes, R., 1996. The new governance: governing without government, Political Studies 44 (1996), pp. 652–667.
   Web of Science ®Google Scholar
• Rothstein, M. A., 2005. Expanding the ethical analysis of biobanks, Journal of Law, Medicine & Ethics 33 (1) (2005), pp. 89–101.
   PubMed Web of Science ®Google Scholar
• Salter, B., and Jones, M., 2005. Biobanks and bioethics: the politics of legitimation, Journal of European Public Policy 12 (4) (2005), pp. 710–732.
   Web of Science ®Google Scholar
• Saward, M., 2003. Enacting democracy, Political Studies 51 (1) (2003), pp. 161–179.
   Web of Science ®Google Scholar
• Seale, C., and Filmer, P., 1998. "Doing social surveys". In: Seale, C., ed. Researching society and culture. London: Sage; 1998. pp. 163–178.
   Google Scholar
• Stoker, G., 1998. Governance as theory: five propositions, International Social Science Journal 155 (1998), pp. 17–28.
   Google Scholar
• Tutton, R., and Corrigan, O., 2004. "Introduction: public participation in genetic databases". In: Tutton, R., and Corrigan, O., eds. Genetic databases: socio-ethical issues in the collection and use of DNA. London: Routledge; 2004. pp. 1–18.
   Google Scholar
• Tutton, R., Kaye, J., and Hoeyer, K., 2004. Governing UK Biobank: the importance of ensuring public trust, TRENDS in Biotechnology 22 (6) (2004), pp. 284–285.
   PubMed Web of Science ®Google Scholar
• UK Biobank, 2003. UK Biobank ethics and governance framework. 2003, [online]. Available from: http://www.ukbiobank.ac.uk/docs/EGF20082.pdf [Accessed 26 July 2011].
   Google Scholar
• Wallace, H. M., 2005. The development of the UK Biobank: excluding scientific controversy from ethical debate, Critical Public Health 15 (4) (2005), pp. 323–333.
   Google Scholar
• Wellcome Trust and Medical Research Council, 2000. Public perceptions of the collection of human biological samples. London: Wellcome Trust and Medical Research Council; 2000.
   Google Scholar
• Wellcome Trust, Medical Research Council, and the Department of Health, 2003. "Ethics and governance framework for UK Biobank published for comment". 2003, Joint Press Release [online]. Available from: http://www.wellcome.ac.uk/News/Media-office/Press-releases/2003/wdt002848.htm [Accessed 26 July 2011].
   Google Scholar
• Widdows, H., 2009. Between the individual and the community: the impact of genetics on ethical models, New Genetics and Society 28 (2) (2009), pp. 173–188.
   Web of Science ®Google Scholar
• Winickoff, D. E., 2007. "Partnership in the UK Biobank: a third way for genomic property?". In: Journal of Law, Medicine & Ethics. 2007. pp. 440–456.
   Google Scholar
• Winickoff, D. E., and Neuman, L. B., 2005. "Towards a social contract for genomics: property and the public in the “Biotrust” model". In: Genomics, Society and Policy. 1(3). 2005, 8–21 [online]. Available from: http://ecnr.berkeley.edu/vfs/PIs/Winickoff-DE/web/SOCIAL%20K%20GENOMICS.pdf [Accessed 26 July 2011].
   Google Scholar