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Canada's Insurance Companies Want All Your Genetic Information

Canada’s privacy watchdog is at odds with the industry.
Image: Flickr/MIKI Yoshihito

If information is power, then DNA is the ultimate weapon.

There's a growing consensus among geneticists that whole genome sequencing—the ability to have your entire genetic code analyzed in detail, and on the cheap—will inevitably reveal things about a person that they did not intend to uncover when they commission a test for, say, Huntington's disease. Moreover, experts agree that having a genetic predisposition for a certain condition does not guarantee that you will be diagnosed with it one day.


Canada is currently the only G7 country without a law to protect people from discrimination based on genetics, but that could change soon. The country is considering a new federal law called the Genetic Non-Discrimination Act that would, among other things, make it illegal for insurers to require that someone take a genetic test, or hand over the results from a previous test, in order to receive health insurance coverage.

Even so, Canadian insurers, who already require detailed health data from their policyholders, are fighting tooth and nail for the right to demand this information from people seeking insurance.

"We just want the capacity to be able to collect information when it is valid and relevant to the risk," said Frank Zinatelli, general counsel for the Canadian Life and Health Insurance Association, during a panel discussion at the International Association of Privacy Professionals conference in Toronto on Thursday.

"This 'just trust us' policy position flies in the face of the underlying concept of privacy: the autonomous control over personal information"

"Trying to remove a prohibition that's been put in place is a political impossibility," Zinatelli continued. "Once you put this in place, you're stuck with what you've got." As genetic testing becomes more accessible in years to come, such a law could have an enormous impact on the industry, he argued.

If policyholders don't have to hand over genetic information, Zinatelli said, people who know they have a genetic predisposition to a disease could game the system and get cheap insurance for what may one day become a major (and expensive) medical problem. "We have one opportunity to make the right call," Zinatelli said, "or we'll be stuck with that risk for the next few decades."


However, the insurance industry really doesn't need someone's entire genome to tell if they are predisposed to fall ill with specific diseases, said Patricia Kosseim, director general of the Office of the Privacy Commissioner (OPC) of Canada. Handing over an entire genetic code creates an unacceptable imbalance of knowledge, and of power, between insurance companies and citizens, she said.

"How equal is that, in terms of information exchange? Is that really the principle of good-faith contract?" Kosseim asked. "This 'just trust us' policy position flies in the face of the underlying concept of privacy: the autonomous control over personal information."

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The debate between Kosseim and Zinatelli was heated, potentially because the insurance industry and the Office of the Privacy Commissioner have been duking it out in public for years over the issue of genetic testing.

The OPC released a report in 2012 that concluded genetic indicators have limited powers of prediction when it comes to someone actually getting the disease they are predisposed to, and that a ban on genetic data would not seriously impact the economics of insurance in Canada. The OPC made a formal statement to this effect in 2014.

Also in 2014, the Canadian Institute of Actuaries countered with their own report, stating that the cost of premiums would actually go up overall without genetic information to make appropriate pricing decisions.

Both Zinatelli and Kosseim brought up these reports during the panel discussion.

It's clear that the Canadian insurance industry isn't going to stop its fight to get its hands on all of your genetic information any time soon, but if the Genetic Non-Discrimination Act passes, it will be a moot point. It will be flatly illegal in all of Canada to force you to take a genetic test or to hand over your results to get insurance.

"We don't believe it's constitutional for the federal government to enact [the law]," said Zinatelli. "Whatever the law is, insurers will comply with that, however."

If the act fails, then Canada's top privacy watchdog and the insurance industry will just have to work out their differences.