Supreme Court upholds law intended to prevent genetic discrimination

The Supreme Court of Canada is shown in Ottawa on Thursday, May 16, 2019. THE CANADIAN PRESS/Sean Kilpatrick

In a split decision, the Supreme Court of Canada has upheld a federal law that forbids companies to make people undergo genetic testing before buying insurance or other services.

The Genetic Non-Discrimination Act also outlaws the practice of requiring the disclosure of existing genetic test results as a condition for obtaining such services or entering into a contract.

The act is intended to ensure Canadians can take genetic tests to help identify health risks without fear the results will pose a disadvantage when seeking life or health insurance.

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In a 5-4 decision, the Supreme Court said Friday the measures are a valid exercise of Parliament’s power over criminal law set out in the Constitution.

The law, passed three years ago, is the result of a bill introduced in the Senate that garnered strong support from MPs despite opposition from then-justice minister Jody Wilson-Raybould.

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Penalties for violating the provisions include a fine of up to $1 million and five years in prison.

The Quebec government referred the law to the provincial Court of Appeal, which ruled in 2018 that it strayed beyond the federal government’s constitutional jurisdiction over criminal law.

The Canadian Coalition for Genetic Fairness then challenged the ruling in the Supreme Court, which heard the appeal last October.

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Five of the nine high court judges allowed the appeal, though they offered two sets of reasons as to exactly how the provisions in question fall within the federal constitutional domain.

“Choices about genetic testing are deeply personal in nature and the reasons for making them vary widely from one individual to another,” Justice Andromache Karakatsanis wrote on behalf of three justices.

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“Just as one individual may wish to be aware of every possible predisposition or risk that a genetic test might reveal, another may prefer not to know. And the individual who wants to know may not want others to know. The act protects those choices.”

Four dissenting judges said the appeal should be dismissed because the measures come under provincial jurisdiction over property and civil rights.

The Coalition for Genetic Fairness successfully argued during the proceedings that the legislation was a permissible exercise of federal criminal-law power.

It noted in a submission that the Supreme Court had previously emphasized this power must be interpreted in a broad, flexible and dynamic manner to allow Parliament to respond to new threats to fundamental personal interests such as health and security.

The federal attorney general, in the unusual position of arguing against the federal law, contended it dealt with the regulation of contracts and the provision of goods and services with the aim of promoting health, relating “fundamentally to provincial jurisdiction over property and civil rights.”

In a statement Friday, David Lametti, the current justice minister, said federal officials were “reviewing the ruling in its entirety.”

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Those who choose to undergo genetic testing “must have confidence their privacy will be respected and that the sensitive information they obtain will not be used to discriminate against in them in any capacity,” Lametti said.

“All governments have a responsibility to protect Canadians from this kind of discrimination within their respective jurisdictions. We will continue to work with partners on these important matters.”

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In its submission to the court, the Canadian Life and Health Insurance Association said existing genetic test results are “material information” when drawing up insurance contracts.

“Genetic tests can identify the risk that a person will develop a disease or diagnose if someone already has a disease,” the submission said. “This information is of course material to insurers when deciding whether or not to offer life or health insurance, and at what price.”

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Kevin Dorse, a spokesman for the association, said Friday it respects the court’s ruling, adding “the industry will continue to adhere to the Genetic Non-Discrimination Act.”

Marie-Claude Landry, chief commissioner of the Canadian Human Rights Commission, called the Supreme Court decision “a victory for the human rights and privacy of all Canadians.”

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