Supreme Court of Canada upholds genetic non-discrimination law

Canada's highest court has issued a ruling today upholding a federal law preventing third parties, such as employers and insurance companies, from demanding genetic information from individuals.

In a 5-4 decision, the Supreme Court of Canada has decided the Genetic Non-Discrimination Act is a constitutional exercise of federal powers.

In a curious twist, the federal government itself argued the legislation falls outside of federal jurisdiction.

In 2017, Liberal backbenchers defied the government to pass the act, Bill S-201 — without the support of cabinet — after it was introduced as a private member's bill by Liberal senator James Cowan, who is now retired.

"I think it's unusual, to say the least," said Cowan of the government's opposition to the law. 

The law aims to protect the genetic information of Canadians, who otherwise could be forced to take a genetic test or provide the results to employers, for example, or to life insurance companies as a condition of coverage.

Jurisdictional conflict

As the bill was going through the House of Commons, then-justice minister and attorney general Jody Wilson-Raybould argued it crossed into provincial and territorial jurisdiction.

Wilson-Raybould sent letters to all the provinces and territorial governments asking them to weigh in on its constitutionality. 

The Government of Quebec challenged the law on the grounds that it interfered with provincial jurisdiction and referred it to the province's Court of Appeal.

In 2018, that appeal court unanimously found the legislation unconstitutional because it does not fit within the framework of criminal law.

The Canadian Coalition for Genetic Fairness appealed the decision to the top court.

Cowan said he consulted with some of the most renowned constitutional experts in the country — including the late Peter Hogg who, he said, concluded the law is constitutional.

The day after the bill received final approval in the House of Commons, Wilson-Raybould announced she wanted to refer the legislation to the country's top court.

Current Justice Minister and Attorney General David Lametti personally voted in favour of the bill before he was in cabinet but that has not changed the federal government's position.

The legislation amended the Canadian Labour Code and Canadian Human Rights Act. It introduced the first nationwide penalties against genetic discrimination, including a fine of up to $1 million and/or imprisonment for five years.

The law includes exceptions for medical, pharmaceutical and scientific purposes.

"Nobody should be discriminated against because of their DNA, because of their chromosomal makeup," said Liberal MP Rob Oliphant of Don Valley West, Ont., who sponsored the legislation in the House of Commons.

Implications could be wide-ranging

Genetic testing has skyrocketed in popularity ever since the human genome was decoded in 2003. Testing is used to predict a patient's risk of getting cancer or hereditary diseases, for example, or to design treatments to deliver the best results.

"It's the key to precision medicine, personalized medicine," Cowan said.

Oliphant said he and Cowan were encouraged to introduce the legislation by geneticists at SickKids hospital in Toronto who reported that parents were choosing not to have genetic tests done for fear of future repercussions for employment and insurance eligibility.

Marcella Daye, a senior policy adviser at the Canadian Human Rights Commission, said it's not clear what the implications would have been if the highest court ruled against the act.

"We're very concerned … that this could roll back important human rights protections and leave people in Canada vulnerable to genetic discrimination, either immediately or in the future," Daye said before the decision.

"Taking a genetic test that could save your life should not come at the price of you not being hired or promoted, or not being able to adopt a child or to travel, not being able to get insurance or access child care."