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53 GENETIC DISCRIMINATION BY INSURERS AS A RESULT OF GENETIC RESEARCH AND TESTING: A COMPARISON OF NATIONAL POLICIES
  1. R. J. Freishtat1,
  2. Y. Joly1,
  3. D. Avard1,
  4. M. Ellenberg1,
  5. B. M. Knoppers1
  1. 1Division of Emergency Medicine, Children's National Medical Center, Washington

Abstract

Purpose Fear of discrimination by health and life insurers has been shown to deter individuals from participating in genetic research and testing. We aimed to construct a comparison of genetic discrimination policies in Canada, Australia, the United Kingdom, and the United States providing useful lessons regarding the management of genetic discrimination public policy.

Methods MEDLINE and the HumGen database were searched for items related to genetic discrimination and health and/or life insurance.

Results The Canadian, Australian, and UK health systems cover all citizens regardless of disease risk. However, life insurance applicants are not protected. In 2004, the Canadian Genetics and Life Insurance Task Force released a “Points to Consider Document” highlighting the importance of having a Canadian debate on the necessity of adopting a moratorium on the use of genetic test results for life insurance. In 2003, the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council recommended the adoption of a system consisting of a regulatory review aimed at ensuring that genetic information would be used in a scientifically reliable and actuarially sound manner. The Association of British Insurers' Code of Practice, in 1999, mandated a “5-year moratorium on the use of genetic test results by insurers” up to a certain policy amount on life, long-term care and disability insurance. In 2001, the moratorium was strengthened and extended for an additional 5 years. As of 2004, 48 states and the District of Columbia had passed some form of legislation prohibiting genetic discrimination in health insurance decisions. At the federal level, The Genetic Information Non-discrimination Act (S. 1053) prohibits discrimination on the basis of genetic information regarding health insurance. It is now in the House of Representatives, where its outcome is uncertain.

Conclusions The public's concern about their own insurability necessitates action to ensure the successful conduct of future genetic epidemiological studies and testing. We argue that the adoption of a voluntary moratorium on genetic test results by the insurance industry appears to be the best option to answer both public anxiety and to provide a minimal amount of protection to insurance applicants.

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