Should women who come from at-risk families get life insurance before being tested for genetic susceptibility to breast cancer? Should physicians warn patients who request a genetic test to get life insurance first? How should physicians react to requests from insurance companies for genetic information about their patients?
There are no definitive answers to questions such as these. However, a 2003 public opinion survey1 revealed that the wide majority of Canadians reject the idea that insurance companies have the right to ask for genetic information even if applicants have personal knowledge of this information. Indeed, the international debate surrounding the role of life insurance, the necessity of risk rating and the notion of “acceptable discrimination” has raised questions about the larger social role of insurance. This debate has been polarized by recent developments in the field of genetics that, in theory, would allow insurers to make use of genetic testing technology as a new underwriting tool.
The importance of genetic information has grown exponentially in the last 20 years. Since the Law Reform Commission of Canada first raised the issue of “insurance testing” in 1991, scientists have completed a draft of the human genome and have identified more than 2 million single nucleotide polymorphisms.2 The number of predictive genetic tests offered for monogenic and complex (multifactorial) diseases has multiplied. Nevertheless, only a small portion of the therapeutic possibilities offered by genetics has been realized.
In the United States, the genetics and insurance debate has focused predominantly on access to health insurance. Canada, like most European countries, has a universal health care system, and thus the focus of discussion has been on access to life insurance as a basic socioeconomic good. In Europe, the Convention on Human Rights and Biomedicine (the “Oveido Convention”) ratified by 17 countries unambiguously states that genetic testing can be used only for health reasons and for research.3 In contrast to the large number of European countries that have clarified their positions regarding the future of genetics and life insurance (see the online table at www.cmaj.ca/cgi/content/full/170/9/1421/DC1), Canada has yet to take a position. Any initiative in this regard should be based on an understanding of how life insurance works, the nature of genetic information, the history of the debate on genetics and life insurance in Canada and the reasons why a Canadian task force decided to take up the challenge.