Health Care Analysis

, Volume 18, Issue 3, pp 279–293 | Cite as

Unjustified Discrimination: Is the Moratorium on the use of Genetic Test Results by Insurers a Contradiction in Terms?

  • Ruth WilkinsonEmail author
Original Article


This paper considers the legal position of genetic test results in insurance law in England and Wales. The strict position is that this information is material to the decision of the insurer to offer insurance cover and should be disclosed by insurance applicants. However, the British Government and the Association of British Insurers have agreed to a moratorium on the use of genetic test results in insurance, which will run until 2014. The moratorium prohibits unfavourable treatment of insurance clients on their basis of their genetics, unless it can be justified. In this paper, I consider the notion of genetic discrimination and ask whether it is possible to justify the concept in such a way that its existence should be accepted. The paper suggests that the insurance industry and the general public have different viewpoints on the concept of discrimination, and that this causes much of the disagreement over the issue of using genetic test results in insurance.


Ethics Genetic discrimination Genetic testing Insurance Law Moratoria 



Association of British Insurers


BReast CAncer susceptibility


Human Genetics Commission


Hereditary nonpolyposis colorectal cancer



This work has been funded by the Arts and Humanities Research Council. The author would like to thank John Birds, John Coggon, colleagues at the Centre for Social Ethics and Policy at the University of Manchester, and the anonymous reviewers.


  1. 1.
    Allen, G. (1997). The social and economic origins of genetic determinism: A case history of the American Eugenics Movement, 1900–1940 and its lessons for today. Genetica, 99, 77–88.PubMedGoogle Scholar
  2. 2.
    Anonymous (2001). Government endorses a 5 year moratorium on genetic testing and insurance “Opportunity to Develop a Lasting Consensus” says ABI (Association of British Insurers Press Release) (23 October 2001) 71/01. Accessed 19 June 2009.
  3. 3.
    Anonymous (2004). How homosexuality is “Inherited”. BBC News (13 October 2004). Accessed 16 May 2009.
  4. 4.
    Anonymous (2005). Armed forces code of conduct (Armed Forces Code of Social Conduct: Policy Statement and the Service Test 21 April 2005). Accessed 19 November 2007.
  5. 5.
    Anonymous (2008). Insurance genetics moratorium extended to 2014 (Association of British Insurers Press Release) (13 June 2008) 39/08. Accessed 17 June 2009.
  6. 6.
    Birds, J. (2007). Birds’ modern insurance law. London: Thomson Sweet and Maxwell.Google Scholar
  7. 7.
    Daykin, C., Akers, D., Macdonald, A., McGleenan, T., Paul, D., & Turvey, P. (2003). Genetics and insurance? Some social policy issues. British Actuarial Journal, 9, 787–830.Google Scholar
  8. 8.
    Department of Health and Association of British Insurers (2005). Concordat and moratorium on genetics and insurance. Accessed 17 June 2009.
  9. 9.
    Halldenius, L. (2005). Dissecting “Discrimination”. Cambridge Quarterly of Healthcare Ethics, 14, 455–463.CrossRefPubMedGoogle Scholar
  10. 10.
    Hellman, D. (2003). What makes genetic discrimination exceptional? American Journal of Law and Medicine, 29, 77–116.PubMedGoogle Scholar
  11. 11.
    Henderson, M. (2008). British team discovers obesity gene. Times (London 5 May 2008). Accessed 16 May 2009.
  12. 12.
    Holt, T. (1991). Flying Dutch. London: Orbit.Google Scholar
  13. 13.
    Human Genetics Commission (2009). Human genetics commission response to the discrimination law review consultation, a framework for fairness: Proposals for a single equality bill for Great Britain (Response to Consultation). Accessed 17 June 2009 (undated).
  14. 14.
    Joly, Y., Knoppers, B. M., & Godard, B. (2003). Genetic information and life insurance: A “Real” risk? European Journal of Human Genetics, 11, 561–564.CrossRefPubMedGoogle Scholar
  15. 15.
    Juengst, E. T. (2004). FACE Facts: Why human genetics will always provoke bioethics. Journal of Law, Medicine and Ethics, 32, 267–275.CrossRefGoogle Scholar
  16. 16.
    Kirby, D. (2000). The new genetics in cinema: Genetic determinism and gene therapy in “GATTACA”. Science Fiction Studies, 27, 193–215.Google Scholar
  17. 17.
    Leigh, S. (1998). The freedom to underwrite. In T. Sorrell (Ed.), Health care, ethics and insurance (pp. 11–53). London: Routledge.Google Scholar
  18. 18.
    Lewens, T. (2002). Development aid: On ontogeny and ethics. Studies in History and Philosophy of Biology and Biomedical Science, 33, 195–217.CrossRefGoogle Scholar
  19. 19.
    Liedtke, P. M. (2007). What’s insurance to a modern economy? The Geneva Papers, 32, 211–221.CrossRefGoogle Scholar
  20. 20.
    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.PubMedGoogle Scholar
  21. 21.
    Macdonald, A. (1994). The story of the tossers. Accessed 10 July 2009.
  22. 22.
    Matloff, E. T., Shappell, H., Brierly, K., Bernhardt, B. A., McKinnon, W., & Peshkin, B. N. (2000). What would you do? Specialists' perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination. Journal of Clinical Oncology, 18, 2484–2492.PubMedGoogle Scholar
  23. 23.
    Moultrie, T. A., & Thomas, R. G. (2009). The right to underwrite? An actuarial perspective with a difference. Accessed 11 June 2009 (undated).
  24. 24.
    Niccol, A. (1997). GATTACA. (Film) Columbia Pictures.Google Scholar
  25. 25.
    Nowlan, W. (2002). A rational view of insurance and genetic discrimination. Science, 297, 195–196.CrossRefPubMedGoogle Scholar
  26. 26.
    Rawls, J. (1999). A theory of justice. Oxford: OUP.Google Scholar
  27. 27.
    Richards, M. (2001). How distinctive is genetic information? Studies in History and Philosophy of Biology and Biomedical Science, 32, 663–687.CrossRefGoogle Scholar
  28. 28.
    Rothstein, M. A., & Anderlik, M. R. (2001). What is genetic discrimination, and when and how can it be prevented? Genetics in Medicine, 3, 354–358.CrossRefPubMedGoogle Scholar
  29. 29.
    Silver, L. (1997). Genetics goes to hollywood. Nature Genetics, 17, 260–262.CrossRefGoogle Scholar
  30. 30.
    Smith, R., & Raithatha, N. (2006). Why disclosure of genetic tests for health insurance should be voluntary. Journal of Health Services Research and Policy, 11, 184–186.CrossRefPubMedGoogle Scholar
  31. 31.
    Wood, D. A., & Williams, C. A., Jr. (1964). High cash value life insurance policies and unfair discrimination. The Journal of Risk and Insurance, 31, 557–572.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Sussex Law School, School of Law, Politics and SociologyUniversity of SussexFalmerUK

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