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.
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