Genomics Governance in the United States and the United Kingdom

in European Journal of Comparative Law and Governance
Restricted Access
Get Access to Full Text
Rent on DeepDyve

Have an Access Token?



Enter your access token to activate and access content online.

Please login and go to your personal user account to enter your access token.



Help

Have Institutional Access?



Access content through your institution. Any other coaching guidance?



Connect

Technological innovation in the area of personalised genetic data poses novel regulatory concerns for state governance. Since personalised genetic data reveals highly sensitive and private information about a person’s susceptibility to illness, it may lead to stigmatisation, discrimination, and breach of privacy. Although legal arrangements for personal or medical data have always been governmental and legal concerns, the introduction of genetic technologies over the past two decades has breathed new life into the idea of privacy and non-discrimination protection for individuals and communities, leading to possible new types of social relationships that circulate in a global biomedical arena. Thus, our analysis of genetic information regulation is based on a comparative analysis of policy instruments by examining the appropriateness of various policy instrument choices made in the United States and in the United Kingdom for securing the rights for privacy, non-discrimination, and access to research benefits for individuals and communities.

Sections

References

1

Amy Harmon, 2010. ’Tribe Wins Fight to Limit Research of Its dna.’ The New York Times, 21 April.

2

B. Salter and M. Jones, ‘Biobanks and Bioethics: The Politics of Legitimation’, Journal of European Public Policy 12(4) (2005) 710–732.

3

R. Kiltzman, Am I my Genes? Confronting Fate and Family Secrets (Oxford: Oxford University Press, 2012).

6

L. Ireni-Saban, ‘Regulating Genetic Information in Germany and Israel: Towards a Policy Network Comparative Analysis’, Journal of Comparative Policy Analysis: Research and Practice 12(4) (2010) 351-372; Salter and Jones,’ Biobanks and Bioethics’ (n 2); S. Parthasarathy, ‘Regulating Risk: Defining Genetic Privacy in the us and Britain’, Science, Technology, and Human Values 9.3 (2004) 332–352.

7

M.R. Anderlik and M.A. Rothstein, ‘Privacy and confidentiality of genetic information: What rules for the new science?’ Annual Review of Genomics and Human Genetics 2 (2001) 401–433; Caplan, ‘What no one knows cannot hurt you’ (n 4); J.H. Gerards and H.L. Janssen, ‘Regulation of genetic and other health information in a comparative perspective’, European Journal of Health Law 13 (2006) 339–398; S. Gibbons, ‘Governance of population genetic databases: A comparative analysis of legal regulation in Estonia, Iceland, Sweden and the uk’, in M. Häyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press, 2007); B. Godard, S. Raeburn, M. Pembrey, M. Bobrow, P. Farndon and S. Aymé, ‘Genetic information and testing in insurance and employment: technical, social and ethical issues’, European Journal of Human Genetics 11 (2003) 123–142; J. Kaye, ‘Abandoning informed consent – the case of population collections’, in: R. Tutton and O. Corrigan (eds), Genetic Databases: Socio-ethical Issues in the Collection and Use of dna (London: Routledge, 2004); M. Mondou and É. Montpetit, ‘Policy styles and degenerative politics: Poverty policy designs in Newfoundland and Quebec’, Policy Studies Journal 38(4) (2010) 703–722; É. Montpetit, C. Rothmayr and F. Varone, The politics of biotechnology in North America and Europe: Policy networks, institutions, and internationalization (Lanham, md: Lexington.2007); A. Petersen and R. Bunton, The New Genetics and the Public’s Health (London: Routledge, 2002); A. Rouvroy, Human Genes and Neoliberal Governance: A Foucauldian Critique (London & New York: Routledge-Cavendish, 2008); R. Tutton, ‘Constructing participation in genetic databases: Citizenship, governance and ambivalence in uk Biobank’, Science, Technology and Human Values 32(2) (2007) 172–195.

14

H.T. Greely, ‘Genotype Discrimination: The Complex Case for Some Legislative Protection’, University of Pennsylvania Law Review 149 (2001) 1483–1505, 1486; E. Oscapella, ‘Genetics, Privacy and Discrimination. Report prepared for the Canadian Biotechnology Advisory Committee; Project Steering Committee on Genetic Privacy, October 2000’ www.cbac-cccb.ca, 22.

3665

Fed. Reg. 82461, 20 December 2000.

44

M.A. Pagnatarro, ‘Genetic Discrimination and the Workplace: Employee’s Right to Privacy v. Employer’s Right to Know’, American Business Law Journal 39(1) (2001) 139–186.

49

L. Rohter, 2007. ‘In the Amazon, giving blood but getting nothing’, The New York Times 20 June. http://www.nytimes.com/2007/06/20/world/americas/20blood.html.

50

D.A. Posey and G. Dutfield, Beyond Intellectual Property: Toward Traditional Resource Rights for Indigenous Peoples and Local Communities (Ottawa, Canada: International Development Research Centre, 1996).

Information

Content Metrics

Content Metrics

All Time Past Year Past 30 Days
Abstract Views 6 6 5
Full Text Views 6 6 6
PDF Downloads 2 2 2
EPUB Downloads 0 0 0