Genetic privacy legislation goes to the SCC

Legislation to protect Canadians’ genetic information is coming before the Supreme Court of Canada. The top court is hearing the case today after the Quebec Court of Appeal found that part of the Act uses the criminal law powers to outlaw genetic discrimination is ultra vires. But the legislation’s curious history means that the Attorney General of Canada is now joining with Quebec’s to defend the provincial ruling, even though Parliament passed the bill.

“This is an important case to test the limits of Parliament’s criminal law power,” says Joseph Arvay, partner with Arvay Finlay LLP in Vancouver, and counsel for the Coalition for Genetic Fairness, who are appealing the Quebec decision. “The Quebec Court of Appeal unanimously struck the law down and remarkably, and to my knowledge for the first time, the Attorney General of Canada is refusing to support the constitutionality of a federal law on jurisdictional grounds.

“My clients, a national advocacy organization whose principal goal is the identification and prevention of genetic discrimination for all Canadians, have been left with the task of defending the constitutionality of the law,” says Arvay.

The bill was first introduced in the Senate three times before it progressed to the House of Commons. Its author is now-retired Liberal Senator James Cowan. With the emergence of genetic testing, Cowan argues that Canadians need more protection concerning genetic information, particularly when used by insurance companies in determining coverage.

“Canada is indisputably a world-leader, and we have better protection in Canada than in any other country,” says Cowan, now a partner with Stewart McKelvey in Halifax.

According to the Coalition, Canada lagged behind all other G7 Countries when it came to protecting genetic test information prior to GNDA receiving royal assent. They cite that Canada now provides equal and sometimes more protection than other countries globally. By comparison, the Genetic Information Non-Discrimination Act in the United States only covers health insurance and not life insurance, leaving a state-by-state patchwork of other protections. The United Kingdom has a moratorium on the use of genetic information that has not affected its insurance industry.

Cowan says that if the legislation’s criminal elements remain struck down, Canada will again fall behind. The bill also names genetic characteristics as a ground for discrimination under the Canadian Human Rights Act and the Canada Labour Code. Those provisions are unaffected by the Quebec decision.

The bill passed the Senate in April of 2016. When it reached the House of Commons, it had the unanimous support of all members except the Cabinet. Then-Justice Minister and Attorney General Jody Wilson-Raybould was convinced that the bill was not an appropriate use of the criminal law powers. Even though no provincial government had objected to the bill previously, Wilson-Raybould sought provincial allies to her cause. Eventually, three provinces, including Quebec, Manitoba, and British Columbia, agreed to side with her arguments.

“Wilson-Raybould was saying that this was the wrong way to go, and I’m working with my provincial counterparts to come up with a solution which respects provincial jurisdictions,” says Cowan. “As far as I know, there’s been absolutely no discussion at the provincial level, much less any discussion led by Canada.”

Only the Northwest Territories had debated a bill on genetic non-discrimination, but it did not pass before their election.

Cowan says that the market for genetic tests is growing, and clinicians have told him that they have been able to advise patients to get genetic tests where they couldn’t before. He suspects they will be upset if Supreme Court rules against them.

“The world didn’t end when the bill passed,” says Cowan. “It hasn’t been abused, and the results of genetic testing are being seen as more valuable by clinicians and by the patients they serve. It’s been good, and I’m disappointed that the government is still pursuing this.”

Cowan notes that current Minister of Justice, David Lametti, voted in favour of the bill at the time. Cowan also confirms that he wrote to all of the provinces to ensure that they would not object to the legislation, and from the responses that he received, nobody raised any objections. Both the Senate and House of Commons committees also heard from constitutional law professor Peter Hogg, who argued that the use of the criminal law powers was valid in such a circumstance.

The Canadian Life and Health Insurance Association is also acting as intervenor in the case. Its position is that the legislation is overbroad and that it deprives insurers of potentially material information necessary to conduct risk-based underwriting.