Canada’s highest court will issue a ruling today that could strike down a federal law preventing third parties, such as employers and insurance companies, from demanding genetic information from individuals.
The Supreme Court of Canada will decide whether the Genetic Non-Discrimination Act is an unconstitutional exercise of federal powers.
In a curious twist, the federal government itself has 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. “I’m optimistic and hopeful that the bill will be upheld.”
The law aims to protect the genetic information of Canadians, who otherwise could be forced to provide the results of genetic testing to employers, for example, or to life insurance companies as a condition of coverage.
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, but that has not changed the 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.
“If the ruling is against us on this, we will find another way.”
If the legislation is struck down, Oliphant said, the provinces and territories should act “very quickly” to pass their own laws to prevent genetic discrimination.
“If it’s their constitutional responsibility to do it, they better do it,” he said.
“The legislation is there. It’s a model piece of legislation at the federal level to be adapted very easily at provincial and territorial levels, and we’ll work on getting that done.”
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 could be if the highest court rules 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.
“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.”