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Canada: Call to halt use of gene test results in insurance calculations

14 July 2014
Appeared in BioNews 762

Canada's Office of the Privacy Commissioner (OPC) has issued a statement urging the life and health insurance industry to refrain from asking applicants for access to existing genetic test results. This would require the insurance industry to go beyond its current voluntary moratorium on asking people to undergo genetic testing on application.

Speaking to the Globe and Mail, Patricia Kosseim - senior general counsel at the OPC - commented, 'In effect, the industry's current position is that applicants should hand over all genetic test results and let the insurance actuaries determine what is material or not… we're saying that by our federal private-sector law standards, insurance companies should not be collecting this information in the first place, if it's not necessary and effective in assessing actuarial risk'.

The OPC, an agency mandated to oversee privacy matters in Canada, has spent the last five years examining the privacy implications that arise from the collection and use of genetic information.

Papers it commissioned as part of its investigations by Professors Angus MacDonald and Michael Hoy and Maureen Durnin, conclude that 'at the present time and in the near future, the impact of a ban on the use of genetic information by the life and health insurance industry would not have a significant impact on insurers and the efficient operation of insurance markets' and thus, 'it is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry's objectives'.

The insurance industry, however, disagrees. 'They say these tests aren't necessary, we think they are', said Frank Zinatelli, vice president and general counsel for the Canadian Life and Health Insurance Association, a group representing 99 percent of the insurance industry in Canada. From the commercial perspective, it thought that genetic information should be treated in the same way as any other piece of available medical information; access to data enabling accurate individual risk classification is paramount to the insurance industry's sustainability.

A difficulty is that at present, many genetic test results may not be sufficiently accurate for the purposes of risk-management, and the collection of genetic information, even beyond important rights and data protection based arguments, raises ethical issues.

The proliferation of unregulated direct-to-consumer genetic testing services; increased levels of longitudinal genetic health research (in which broader trends as opposed to accurate individual results are commonly sought); and the social and environmental factors than can influence disease, can give rise to a concern that people ostensibly predisposed to higher risks of disease may be at risk of being unfairly discriminated against.

Canada, unlike other jurisdictions however, currently has no legislation or formal mechanisms to prohibit genetic discrimination by its insurers. The USA in 2008, in contrast, adopted the Genetic Information Nondiscrimination Act (see BioNews 460) and the UK Government has agreed on a comprehensive voluntary moratorium on the use of predictive genetic test results with the Association of British Insurers that covers the majority of health and life insurance policies in the UK (see BioNews 663).

The present lack of legislative guidance on the issue in Canada appears to contribute to the sense of urgency with which the OPC statement has been issued. Nevertheless in, '[r]ecognising that the state of medical technology is changing rapidly,' the OPC has indicated that its 'position should be revisited on a periodic basis'.

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