A pre-existing health condition can be enough to void your insurance coverage – but life and health insurers shouldn’t be asking those looking to buy a policy to undergo genetic testing, says Canada’s privacy watchdog, the Office of the Privacy Commissioner of Canada. Nor should it have access to any existing genetic test results.
Such tests, which are becoming widely available, can be used to see whether someone is at increased risk of certain medical conditions based on their genomic data.
Just last week, California-based 23andMe announced that it would start selling its $199 genetic test kits in Canada, providing information on more than 100 health conditions gleaned from a saliva sample.
But a growing number of critics fear that such access could have serious consequences for the public, allowing insurers and employers to use that information to deny coverage and benefits.
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Denied Insurance Coverage A Major Concern
The Coalition for Genetic Fairness, a group of 15 organizations devoted to patients with diseases that have genetic components, maintains some people are already being denied insurance because they have a predisposition for a particular disease.
A few years ago, for instance, a UBC study concluded that insurance companies routinely discriminate against people with a family history of Huntington’s disease – a brain-wasting affliction that’s passed on through a single genetic mutation.
In addition to insurance, there was also discrimination reported in employment, health care, and public sector settings.
“Without protection, people may be reluctant to come forward for treatment, to benefit from early detection, and to participate in clinical trials,” warns Bev Heim-Myers, CEO of the Huntington Society of Canada and Chair of the Coalition.
This is likely to become an even bigger problem as scientists continue to uncover specific genetic markers implicated in various diseases, she adds.
Genetic Test Results Need To Remain Private
Canadians need the freedom to choose to undergo such genetic testing to better understand disease risk, prevention, and treatment without the fear of negative impact from the insurance industry, the OPC maintains.
Potential genetic discrimination was mentioned in the Speech from the Throne last fall and identified as a priority for the federal government.
So far, the OPC’s message has been aimed mainly at the Canadian Life and Health Insurance Association, which has long argued that its member companies need such medical information to accurately assess the risks involved in insuring potential clients.
Requiring someone with a higher risk of illness to pay higher premiums is only fair to other policyholders, insurers maintain, arguing that pooling risk is the whole concept behind insurance.
DNA Part Of Health History, Insurers Say
Insurers don’t currently force genetic testing on applicants, but state they have the right to require the results of any tests that have been conducted – just as they would for other aspects of someone’s health history.
The OPC’s position on the matter is quite specific, however: “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 at this time.”
Many other countries have controls in place to protect genetic information, including the U.S., which signed the Genetic Information Non-discrimination Act into law several years ago.
The lack of such legislation in Canada, however, has prompted the introduction of private members’ bills – at both the federal and provincial levels.