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Canada’s new genetic privacy law is causing huge headaches for Justin Trudeau

A vote in Canada’s Parliament to approve a genetic privacy bill is creating a self-inflicted political headache for Prime Minister Justin Trudeau’s Liberal government—and could result in a relatively rare and unusual court case.

The Genetic Non-Discrimination Act, originally introduced in 2013 by now-retired Liberal Senator James Cowan, is aimed at preventing the use of information generated by genetic tests to deny health insurance, employment, and housing, or to influence child custody and adoption decisions. It calls for fines of up to $740,000 and prison terms of up to 5 years for anyone who requires any Canadian to undergo a genetic test, or to disclose test results, in order to obtain insurance or enter into legal or business relationships. The bill bars discrimination on the grounds of genetics, and the sharing of genetic test results without written consent (with exemptions for researchers and doctors).

Supporters said the law is needed to encourage Canadians to make greater use of genetic testing. Currently, they claimed, many Canadians refuse genetic tests in the course of care or clinical trials because they fear insurers or others could use the results against them. But opponents of the bill, including health and life insurers, argued a ban would increase treatment and insurance costs. Instead, insurers support a voluntary code regulating the use of genetic tests in underwriting life insurance policies; it would allow insurers to require tests only for policies worth more than $185,500. Trudeau’s Liberal Party cabinet also formally opposed the measure, with Justice Minister Jody Wilson-Raybould arguing that the bill is unconstitutional because it intrudes on powers given to Canada’s 13 provincial and territorial governments to regulate insurance.

Those arguments, however, failed to sway lawmakers. On 9 March, members of Parliament voted 222–60 to approve the measure. More than 100 Liberal members voted for the bill, taking advantage of a so-called free vote, which allows members to vote their conscience rather follow the party line.

The vote was applauded by Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness in Kitchener, which represents 18 disease-based organizations. “Finally, the voices of Canadians, and the voices of science and medicine, were heard,” she says.

The result has prompted Trudeau’s government to consider extraordinary measures to block the legislation. Normally, the bill would become law once it is approved by Canada’s governor-general (and in this case, after Canada’s Senate approves a minor amendment requested by the House of Commons). The governor-general, who represents the queen of England, is a holdover from Canada’s past as a British colony, and typically rubber stamps legislation passed by Parliament.

To delay and potentially kill the legislation, Trudeau’s government is considering not sending the bill to the governor-general (a tactic that doesn’t appear to have been used since the 1920s), and instead asking Canada’s Supreme Court to rule on the bill’s constitutionality. That process could take up to 2 years.

Cowan, the bill’s original sponsor, says he can’t fathom the rationale behind the government’s stance. “Is it really up to the government of Canada to defend provincial jurisdiction, or the insurance industry?” he asks.

Prominent legal scholars are skeptical of the government’s claim that the law is unconstitutional. Canada’s Supreme Court has previously held that federal criminal law can apply to regulating food, drugs, guns, and other areas in which the goal is to mitigate so-called “social evils,” they note. And the claim that the bill infringes on provincial power to regulate insurance may not hold up, because the law applies equally to all commercial sectors.