On Wednesday night, Canadian parliament bucked the Prime Minister to pass a law that makes it illegal for employers or insurance companies to discriminate against people based on their DNA.
A growing number of people are having their genomes sequenced so doctors can assess their risk for various diseases, such as breast or ovarian cancer. But insurance companies also want to get their hands on that information in order to determine who's most at risk of falling ill, and charge them accordingly. One could also imagine an employer wanting to know if an air traffic controller, for example, will risk a sudden heart attack.
However, being at higher risk of developing a certain disease is not a guarantee that'll actually happen. In the US, it's illegal to discriminate someone based on their genes, and now Canada's Genetic Non-Discrimination Act would offer similar protections, making it illegal for anyone to require genetic testing as a precondition for entering into a contract or providing goods and services.
This means that once the Governor General signs the Act into law in the coming days, it will be illegal for a potential employer or your insurance company to require that you undergo a genetic test, or hand over the results of a previous one.
Genetic testing has been a contentious privacy issue in Canada for a while now, particularly when it comes to insurance companies that worry not requiring genetic tests would allow people who know they have a genetic predisposition to withhold that information from insurers, gaming the system. The Office of the Privacy Commissioner (OPC), however, has maintained that a person's genome can contain unexpected insights that individuals may not understand the implications of when they give it to insurers.
"How equal is that, in terms of information exchange? Is that really the principle of good-faith contract?" Patricia Kosseim, director general of the OPC, said at a panel on genetic testing at last year's International Association of Privacy Professionals conference in Toronto. "This 'just trust us' policy position flies in the face of the underlying concept of privacy: the autonomous control over personal information."
The Act passed in parliament thanks to a revolt by Liberal party backbenchers and the official opposition, while Prime Minister Justin Trudeau argued that aspects of the Act that touch on contract law and the insurance industry overstep federal responsibilities. Still, the law passed so that genetic testing can be done in Canada for medical purposes without patients wondering if their insurance company or employer will ask them for results.
"Unfortunately, under our current regime, Canadians often refuse to undergo a genetic test, even based on a recommendation from a doctor, because of the fear of genetic discrimination," said Liberal member of parliament Jennifer O'Connell in parliament on Tuesday night during debate.
But the government, and insurance companies, maintain that parts of the law are unconstitutional.
"The industry agrees with the federal government's position as expressed by the Prime Minister and the Minister of Justice, as well as a number of provinces, that an important element of the Bill is unconstitutional," Wendy Hope, spokesperson for the Canadian Life and Health Insurance Association, wrote Motherboard in an emailed statement.
When I reached constitutional scholar and assistant dean of the University of Ottawa's law faculty Pierre Thibault, who testified before parliament on the legality of the Act, he was adamant that in his legal opinion it is constitutional.
"It is based on the criminal power of the government, and the criminal power is the same across the country," said Thibault over the phone. "If you can legislate in one field and the encroachment is minimal in the other field, then that law is valid."
The government should prepare itself for a legal fight. The Canadian Life and Health Insurance Association is "considering its options" now that the bill has been passed, Hope wrote. Some provinces are also expected to join any legal challenge, Thibault said.
For now, at least (and once the bill receives royal assent), it looks like Canada has avoided a future where your employment prospects and your insurance premiums depend on your genetic makeup.
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from Canada’s New Genetic Discrimination Law Will Prevent a ‘Gattaca’ Future