Skip to main content
×
×
Home

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

  • James Mittra (a1)
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.

Copyright
References
Hide All
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.pdf
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, 353363.
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.
Baker, T. (2003). Containing the promise of insurance: Adverse selection and risk classification. Connecticut Insurance Law Journal, 9, 371396.
Barr, N.(1993). The economics of the welfare state. London: Weidenfeld & Nicolson.
Brockett, P.L., & Tankersley, S.E. (1997). The genetics revolution: Economics, ethics and insurance. Journal of Business Ethics, 16, 16611676.
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.
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.
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.
Clark, G. (1999). Betting on lives: The culture of life insurance in England, 1695–1775.Manchester: Manchester UP.
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.htm
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.pdf
Draper, H.(1998). HIV and insurance. In Sorell, T.(Ed.), Health care, ethics and insurance,101–115. London: Routledge.
Ericson, R.V., & Doyle, A. (2004). Uncertain business: Risk, insurance and the limits of knowldge. Toronto: U Toronto Press.
Erskine, A. (1997). The withering of social insurance in Britain. In Clasen, J.(Ed.), Social insurance in Europe. Bristol: Policy Press.
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.pdf
Frank, A.L. (1999). Ethical aspects of genetic testing. Mutation Research, 428, 285290.
Gevers, S. (1993). Use of genetic data, employment and insurance: An international perspective. Bioethics, 7, 126134.
Hacking, I. (1990). The taming of chance. Cambridge: Cambridge UP.
Hamilton, W., Round, A.P., & Hall, G. (1995). Obtaining insurance should not depend on mechanism of diagnosis tests. Letter to BMJ, 311, 1164.
Hoyweghen, I.V., Horstman, K., & Schepers, R. (2005). ‘Genetics is not the issue’: Insurers on genetics and life insurance. New Genetics and Society, 24, 7998.
Husted, J. (1999). Insurance, genetics and solidarity. In McGleenan, T.Wiesing, V.& Ewald, F. (Eds). Genetics and insurance, 1–16. Oxford: BIOS.
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.
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.
Lapham, V., Chahira Kozmo, E., &Weiss, J.O. (1996). Genetic discrimination: perspectives of consumers. Science, 274, 621623.
Launis, V. (1999). Genetic discrimination. In Mcgleenan, T.Wiesing, U. & Ewald, F.(Eds), Genetics and insurance, 35–46. London: BIOS.
Le Grys, D.J. (1997). Actuarial considerations on genetic testing. Philosophical Transactions of the Royal Society London B, 352, 10571061.
Leigh, S. (1998).The freedom to underwrite. In Sorell, T. (Ed.), Health care, ethics and insurance, 11–53. London: Routledge.
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, 16321635.
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, 283286.
McGleenan, T. (1999). Genetic testing and the insurance industry. In McGleenan, T.Wiesing, U. & Ewald, F.(Eds), Genetics and insurance, 57–73. London: BIOS.
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.
Mittra, J. (2006). Genetic exceptionalism and precautionary politics: Regulating for uncertainty in Britain’s genetics and insurance policy process. Science and Public Policy, 33, 585600.
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.
O’Malley, P. (1999). Imagining insurance: Risk, thrift and industrial life insurance in Britain. Connecticut Insurance Law Journal, 5, 675705.
O’Neill, O. (1997a). Genetics, insurance and discrimination. Manchester: Manchester Statistical Society.
O’Neill, O. (1997b). Genetic information and insurance: Some ethical issues. Philosophical Transactions of the Royal Society of London B, 352, 10871093.
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.
Parthasarathy, S. (2004). Regulating risk: Defining genetic privacy in the United States and Britain.Science, Technology and Human Values, 29, 332352.
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.
Radetzki, M., Juth, N., & McCall-Smith, A. (eds)(2003). Genes and insurance: Ethical, legal and economic issues. Cambridge: Cambridge UP.
Reilly, P.R.(1999). Genetic discrimination. In C. Long (Ed.), Genetic testing and the use of information, 106–133. Washington, DC: AEI Press.
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, 11031106.
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.
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.
Sandberg, P.(1995). Genetic information and life insurance: A proposal for an ethical European policy. Social Science and Medicine, 40, 15491559.
Schatz, B. (1987). The AIDS insurance crisis: Underwriting or overreaching. Harvard Law Review, 100, 17821805.
Sorell, T. (1998). Freedom within limits: Underwriting and ethics. In Sorell, T. (Ed.), Health care, ethics and insurance, 54–72. London: Routledge.
Star, S.L., & Bowker, G. (1999). Sorting things out: Classification and its consequences. Cambridge, MA: MIT Press.
Supple, B. (1970). The Royal Exchange Assurance: A history of British insurance 1720–1970. Cambridge: Cambridge UP.
Suter, S.M. (2001). The allure and peril of genetic exceptionalism: Do we need special Genetics legislation? Washington University Law Quarterly, 79, 669748.
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.pdf
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.html
Warnock, M. (1993). The problems of knowledge. In Holland, B.& Charalambos, K.(Eds), Genetics and society. Wokingham: Addison-Wesley.
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.htm
Wiesing, U. (1999). Genetic discrimination and insurance in practice. In McGleenan, T.Wiesing, U.& Ewald, F.(Eds), Genetics and insurance, 47–52. Oxford: BIOS.
Wilkie, D. (1997). Mutuality and solidarity: Assessing risks and sharing losses. Philosophical Transactions of the Royal Society of London B, 352, 10391044.
Zelizer, V.A.R (1983). Morals and markets: The development of life insurance in the United States. Edison, NJ: Transaction.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

BioSocieties
  • ISSN: 1745-8552
  • EISSN: 1745-8560
  • URL: /core/journals/biosocieties
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed