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Predictive Genetic Information and Access to Life Assurance: The Poverty of ‘Genetic Exceptionalism’

Published online by Cambridge University Press:  01 September 2007

James Mittra
James Mittra
Affiliation:
ESRC Innogen Centre, Institute for the Study of Science, Technology & Innovation, University of Edinburgh,High School Yards, Edinburgh EH1 1LZ, UK E-mail: James.Mittra@ed.ac.uk
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Abstract

Concern that advances in predictive genetic testing might result in increased numbers of individuals being denied access to life assurance has led many countries to restrict insurers’ historic ‘right to underwrite’. Critics of the insurance industry present genetic discrimination as a threat to the social values of equality and inclusion. However, by unpacking the foundational principles of private insurance, and adopting a more critical approach to genetic information, discrimination, fairness and inclusion, this article suggests that the normative values underpinning life assurance in Britain are unlikely to engender widespread exclusion in an age of increased genetic knowledge, but over-regulation of industry might itself create unacceptable inequity within the market. This suggests that we ought to link the legitimacy of regulatory constraint to the type of social good particular forms of insurance exemplify, and instead of focusing narrowly on genetic information consider the broader implications of risk assessment for the privatization of welfare.

Keywords

actuarial fairnessdiscriminationgenetic informationlife assurancesocial good
Type
Articles
Information
BioSocieties , Volume 2 , Issue 3 , September 2007 , pp. 349 - 373
Copyright
Copyright © London School of Economics and Political Science 2007

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References

ABI (Association of British Insurers) (2004). Genetic testing and insurance: ABI code of practice on genetic testing compliance report and data analysis for 2002. London: Association of British Insurers. URL (accessed July 2007): www.abi.org.uk/Display/File/364/GenCodeComplSumm2002_final.pdfGoogle Scholar
Alferoff, C., Knights, D., Leyshon, A.&Signoretta, P. (2004). The ‘let them eat cake’ strategy for ‘industrial branch’ insurance clients: Reflecting on the demise of a sector in financial services. Social Policy and Society, 3, 353–363.CrossRefGoogle Scholar
Allen, A.L. (1997). Genetic privacy: Emerging concepts and values. In Rothstein, M.A.(Ed.), Genetic secrets: Protecting privacy and confidentiality in the genetic era, 31–59. New Haven, CT: Yale UP.Google Scholar
Baker, T. (2003). Containing the promise of insurance: Adverse selection and risk classification. Connecticut Insurance Law Journal, 9, 371–396.Google Scholar
Barr, N.(1993). The economics of the welfare state. London: Weidenfeld & Nicolson.Google Scholar
Brockett, P.L., & Tankersley, S.E. (1997). The genetics revolution: Economics, ethics and insurance. Journal of Business Ethics, 16, 1661–1676.CrossRefGoogle ScholarPubMed
Burley, J. (1999). Bad genetic luck and health insurance. In Burley, J.(Ed.), The genetic revolution and human rights, 54–60, Oxford Amnesty Lectures 1998. Oxford: Oxford UP.CrossRefGoogle Scholar
Carter, S. (1995). Boundaries of danger and uncertainty: An analysis of the technological culture of risk assessment. In Gabe, J.(Ed.), Medicine, health and risk: Sociological approaches, Sociology of Health and Illness Monograph Series. Oxford: Blackwell.Google Scholar
CEST (Centre for the Exploitation of Science and Technology) (2001). New genetics: Opportunities and challenges for the future. Summary of a collaborative project, May. London: CEST.Google Scholar
Clark, G. (1999). Betting on lives: The culture of life insurance in England, 1695–1775.Manchester: Manchester UP.Google Scholar
COE (Council of Europe) (1997). Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. Convention on Human Rights and Biomedicine, Council of Europe ets 164. URL (accessed June 2007): http://conventions.coe.int/treaty/en/treaties/html/164.htmGoogle Scholar
DOH(Department of Health) (2005). Concordat and moratorium on genetics and insurance. March. London: Department of Health. URL (accessed June 2007): www.dh.gov.uk/assetRoot/04/10/60/50/04106050.pdfGoogle Scholar
Draper, H.(1998). HIV and insurance. In Sorell, T.(Ed.), Health care, ethics and insurance,101–115. London: Routledge.Google Scholar
Ericson, R.V., & Doyle, A. (2004). Uncertain business: Risk, insurance and the limits of knowldge. Toronto: U Toronto Press.Google Scholar
Erskine, A. (1997). The withering of social insurance in Britain. In Clasen, J.(Ed.), Social insurance in Europe. Bristol: Policy Press.Google Scholar
Financial Services Consumer Panel (2001) Consumers in the financial market: Financial Services Consumer Panel annual survey of consumers 2000. London: FSCP. URL (accessed July 2007): www.fs-cp.org.uk/pdf/010605_fscpannualsurveyreport00website.pdfGoogle Scholar
Frank, A.L. (1999). Ethical aspects of genetic testing. Mutation Research, 428, 285–290.CrossRefGoogle ScholarPubMed
Gevers, S. (1993). Use of genetic data, employment and insurance: An international perspective. Bioethics, 7, 126–134.CrossRefGoogle ScholarPubMed
Hacking, I. (1990). The taming of chance. Cambridge: Cambridge UP.CrossRefGoogle Scholar
Hamilton, W., Round, A.P., & Hall, G. (1995). Obtaining insurance should not depend on mechanism of diagnosis tests. Letter to BMJ, 311, 1164.CrossRefGoogle Scholar
Hoyweghen, I.V., Horstman, K., & Schepers, R. (2005). ‘Genetics is not the issue’: Insurers on genetics and life insurance. New Genetics and Society, 24, 79–98.CrossRefGoogle Scholar
Husted, J. (1999). Insurance, genetics and solidarity. In McGleenan, T.Wiesing, V.& Ewald, F. (Eds). Genetics and insurance, 1–16. Oxford: BIOS.Google Scholar
Juengst, E.T. (1996). Self-critical federal science. In Paul, E.F.Miller, F.D.&Paul, J. (Eds), Scientific innovation, philosophy, and public policy, 63–95. Cambridge:Cambridge UP.Google Scholar
Knoppers, B.M. (1999). Who should have access to genetic information In Burley, J.(Ed.), The genetic revolution and human rights, 39–53, Oxford Amnesty Lectures 1998. Oxford: Oxford UP.Google Scholar
Lapham, V., Chahira Kozmo, E., &Weiss, J.O. (1996). Genetic discrimination: perspectives of consumers. Science, 274, 621–623.CrossRefGoogle ScholarPubMed
Launis, V. (1999). Genetic discrimination. In Mcgleenan, T.Wiesing, U. & Ewald, F.(Eds), Genetics and insurance, 35–46. London: BIOS.Google Scholar
Le Grys, D.J. (1997). Actuarial considerations on genetic testing. Philosophical Transactions of the Royal Society London B, 352, 1057–1061.CrossRefGoogle ScholarPubMed
Leigh, S. (1998).The freedom to underwrite. In Sorell, T. (Ed.), Health care, ethics and insurance, 11–53. London: Routledge.Google Scholar
Low, L., King, S., & Wilkie, T. (1998). Genetic discrimination in life insurance: Empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. British Medical Journal, 317, 1632–1635.CrossRefGoogle ScholarPubMed
Mandl, K.D., Szolovits, P., & Kohane, I.S. (2001). Public standards and patients’ control: How to keep electronic medical records accessible but private. British Medical Journal, 322, 283–286.CrossRefGoogle ScholarPubMed
McGleenan, T. (1999). Genetic testing and the insurance industry. In McGleenan, T.Wiesing, U. & Ewald, F.(Eds), Genetics and insurance, 57–73. London: BIOS.Google Scholar
McLean, S.(1998). Interventions in the human genome. In Brownsword, R.Cornish, R.W. & Llewelyn, M.(Eds), Law and human genetics: Regulating a revolution, 89–104. Oxford: HART.Google Scholar
Mittra, J. (2006). Genetic exceptionalism and precautionary politics: Regulating for uncertainty in Britain’s genetics and insurance policy process. Science and Public Policy, 33, 585–600.CrossRefGoogle Scholar
Murray, T.H. (1997). Genetic exceptionalism and ‘future diaries’: Is genetic information different from other medical information InRothstein, M.A. (Ed.), Genetic secrets: Protecting privacy and confidentiality in the genetic era, 60–73. New Haven, CT: Yale UP.Google Scholar
O’Malley, P. (1999). Imagining insurance: Risk, thrift and industrial life insurance in Britain. Connecticut Insurance Law Journal, 5, 675–705.Google Scholar
O’Neill, O. (1997a). Genetics, insurance and discrimination. Manchester: Manchester Statistical Society.Google Scholar
O’Neill, O. (1997b). Genetic information and insurance: Some ethical issues. Philosophical Transactions of the Royal Society of London B, 352, 1087–1093.CrossRefGoogle ScholarPubMed
Orentlicher, D. (1997). Genetic privacy in the patient–physician relationship. In Rothstein, M.A.(Ed.), Genetic secrets: Protecting privacy and confidentiality in the genetic era, 77–91. New Haven, CT: Yale UP.Google Scholar
Parthasarathy, S. (2004). Regulating risk: Defining genetic privacy in the United States and Britain.Science, Technology and Human Values, 29, 332–352.CrossRefGoogle Scholar
Peters, D.A. (1998). Risk classification, genetic testing, and health care: A conflict between libertarian and egalitarian values? In Peters, T. (Ed.), Genetics: Issues of social justice, 205–217. Cleveland, OH: The Pilgrim Press.Google Scholar
Radetzki, M., Juth, N., & McCall-Smith, A. (eds)(2003). Genes and insurance: Ethical, legal and economic issues. Cambridge: Cambridge UP.CrossRefGoogle Scholar
Reilly, P.R.(1999). Genetic discrimination. In C. Long (Ed.), Genetic testing and the use of information, 106–133. Washington, DC: AEI Press.Google Scholar
Ross, T.(1997). The likely financial effects on individuals, industry and commerce of the use of genetic information. Philosophical Transactions of the Royal Society of London B, 352, 1103–1106.CrossRefGoogle ScholarPubMed
Roth, P. (1995). AIDS and insurance: Some very British questions. In Fitzsimons, D.Hardy, V. & Tolley, K.(Eds), The economic and social impact of AIDS in Europe. London: National Aids Trust.Google Scholar
Rothenberg, K. (1999). The social implications of the use of stored tissue samples: Context, control, and community. In Long, C. (Ed.), Genetic testing and the use of information, 84–88. Washington, DC: AEI Press.Google Scholar
Sandberg, P.(1995). Genetic information and life insurance: A proposal for an ethical European policy. Social Science and Medicine, 40, 1549–1559.CrossRefGoogle ScholarPubMed
Schatz, B. (1987). The AIDS insurance crisis: Underwriting or overreaching. Harvard Law Review, 100, 1782–1805.CrossRefGoogle ScholarPubMed
Sorell, T. (1998). Freedom within limits: Underwriting and ethics. In Sorell, T. (Ed.), Health care, ethics and insurance, 54–72. London: Routledge.Google Scholar
Star, S.L., & Bowker, G. (1999). Sorting things out: Classification and its consequences. Cambridge, MA: MIT Press.Google Scholar
Supple, B. (1970). The Royal Exchange Assurance: A history of British insurance 1720–1970. Cambridge: Cambridge UP.Google Scholar
Suter, S.M. (2001). The allure and peril of genetic exceptionalism: Do we need special Genetics legislation? Washington University Law Quarterly, 79, 669–748.Google ScholarPubMed
Thomas, G. (2001). Comments regarding additional information requested from the insurance industry. Response to the Human Genetics Commission Public Consultation, April. URL (accessed June 2007): www.guythomas.org.uk/pdf/HGC29Apr.pdfGoogle Scholar
UNESCO (1997). Universal declaration on the human genome and human rights. URL (accessed): http://portal.unesco.org/en/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.htmlGoogle Scholar
Warnock, M. (1993). The problems of knowledge. In Holland, B.& Charalambos, K.(Eds), Genetics and society. Wokingham: Addison-Wesley.Google Scholar
WHO (1992). World Medical Association declaration on the human genome project. Adopted by the 44th World Medical Assembly Marbella Spain, September. URL (accessed June 2007): www.wma.net/e/policy/g6.htmGoogle Scholar
Wiesing, U. (1999). Genetic discrimination and insurance in practice. In McGleenan, T.Wiesing, U.& Ewald, F.(Eds), Genetics and insurance, 47–52. Oxford: BIOS.Google Scholar
Wilkie, D. (1997). Mutuality and solidarity: Assessing risks and sharing losses. Philosophical Transactions of the Royal Society of London B, 352, 1039–1044.CrossRefGoogle ScholarPubMed
Zelizer, V.A.R (1983). Morals and markets: The development of life insurance in the United States. Edison, NJ: Transaction.Google Scholar