Quebec challenge to genetic non-discrimination act reopens debate

Patients' freedom and health could be put at risk if the motion succeeds, says one expert

Quebec challenge to genetic non-discrimination act reopens debate

Quebec is questioning the constitutionality of Canada’s year-old Genetic Non-Discrimination Act, saying that the federal law infringes on provinces’ jurisdiction over the regulation of the insurance industry. But one genomics and policy expert believes that patients could be put at risk if the province’s motion, referred through the Court of Appeal of Quebec, is successful.

Yvonne Bombard, a researcher with the Li Ka Shing Knowledge Institute at St. Michael's Hospital, co-authored a commentary on the issue with Huntington Society of Canada CEO Bev Heim-Myers in the Canadian Medical Association Journal, reported CBC News.

According to Bombard, overturning the act would have repercussions that go far beyond insurance. “[I]t's about ensuring Canadians have access to the best possible health care and can make the best possible health-care decisions for themselves, without being fearful of having their genetic test results used against them,” she told the news outlet.

In her research, Bombard has encountered numerous instances of profiling and discrimination following a positive test for genetic illness. These include people being denied insurance required to get a small-business loan, being passed over for a promotion, and not being approved as an adoptive parent.

Even negative test results could have negative implications. CBC News cited the example of Brynne Stainsby, a woman whose family history of Huntington’s disease prompted her to get tested for the condition. She tested negative, but when she applied for life insurance with two other business partners afterward, her application took far longer to secure even though she was the youngest among them.

“Stainsby had sent in her negative Huntington's test result at the beginning of the process, but the insurer still contacted her family physician for additional confirmation and documentation,” said CBC News.

That kind of information is necessary for insurance companies, argued Canadian Life and Health Insurance Association President and CEO Stephen Frank. “What we don't want to have happen is that an individual gets a [positive] test result and then orders a very large insurance policy,” he said. “If we don't understand the risk, we can't price it accordingly.”

Saying that an outright ban on contracts that consider genetics is “too blunt a tool,” Frank said insurance companies may resort to protecting themselves by increasing prices across the board, which could leave fewer Canadians with coverage.

“Quebec considers that the new law on genetic non-discrimination adopted by the federal Parliament is unconstitutional,” said Quebec press secretary Isabelle Marier St-Onge in an email to CBC News, which was translated from French.

“Quebec, as always, intends to fully enforce its jurisdiction, particularly with respect to property and civil rights. We will present our arguments at the appropriate time before the court,” she said.


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