D.I.Y. genetic testing: Risky business

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What harm could come from sending off a sample of your DNA to find out your genetic history and potential health problems? (From the archive)

On a midweek morning in 2015, Tim Cottee clicked shut his office door, woke his computer and girded himself for a piece of life-changing news. Weeks earlier, the 42-year-old executive at a Winnipeg financial services company had signed up with 23andMe, a California-based company that provides DNA testing and health information to Canadians over the web.

The company has faced no such roadblock in Canada. Here, direct-to-consumer DNA testing has fallen through the yawning chasm known as the constitutional division of powers. Health Canada says the service falls under the jurisdiction of the provinces, while the provinces show little interest in regulating testing that is done outside their borders . No surprise, then, that 23andMe has ramped up efforts to market its genetic health service north of the border since the FDA clipped its wings.

The company has since shared that information with partners ranging from pharmaceutical giant Pfizer and the U.S. National Institutes of Health, to advance research into everything from obesity to Parkinson’s disease. In 2015, the firm announced it is launching its own research division to develop drug therapies.

Such notes of caution litter the site. But critics complain they aren’t enough, because the thought of revelatory news a couple of clicks away is too tempting for most people to pass up. Adverse findings can trigger panic, while an absence of indicators provides false reassurance, warns Allie Janson Hazell, president-elect of the Canadian Association of Genetic Counsellors.

Whatever the criticisms, direct-to-consumer DNA test results appear to be good enough for the insurance industry. Five years ago, knowing that many Canadians would soon be able to afford the tests, the association representing the country’s life and health insurers issued a statement claiming the right to ask applicants if they’d had genetic testing done. If so, they’d ask for the information before agreeing to a policy, they said, just as they would demand disclosure of other medical records.

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It would be equal to selling your soul to the devil! People guard their money more than their privacy these days.

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