How taking a DNA genetic test could affect your life and health insurance coverage

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A simple at-home DNA kit can cause major problems with your insurance Popjournalism

You've seen the ads offering genetic health tests, promising to reveal your hereditary health history and potential risk factors. But before you part with your cash and send away your saliva, consider the potential impact to your life and health insurance coverage.

Global News' Patrick Cain reported a case in Ontario where a woman unwittingly mentioned to her insurance broker that she had taken a DNA test which revealed a genetic mutation that put her at "much higher risk of breast and ovarian cancer." Her application approval was then revoked.

There are currently no laws in Canada to prevent genetic discrimination. Canada is the only G7 country that doesn't have these protections.

Canadian insurers have a voluntary ban in place that prevents applicants from being asked if they have taken a genetic health test or requiring existing policy holders to take one — and no protection if an applicant offers this information to their insurer.

Senator James
   Senator James "Jim" Cowan (born January 22, 1942) is leader of the Independent Liberal caucus. A lawyer, Cowan has been a partner at the legal firm of Stewart McKelvey since 1967 Official government photo

For years, Nova Scotia Senator James Cowan has been trying to change this. His "Genetic Non-Discrimination Act" has gone through one, two, three permutations.

Last year, the Conservative majority on the Senate Human Rights Committee removed most of his bill's punch by arguing that its insurance regulations fell under provincial jurisdiction.

At the time, Cowan told the Halifax Chronicle-Herald that insurance lobbying killed the bill: "No question. The major opposition to it was the insurance industry. There was no opposition from any province," he said.

Obviously, the insurance industry wants access to DNA health testing for its underwriting. Frank Swedlove, CEO of the Canadian Life and Health Insurance Association, wrote an op-ed in the Globe and Mail in April titled "Yes, insurers need access to your genetic test results."

In this debate, insurance industry advocates aren't necessarily taking us to a dystopian future where good genetics determine individual destiny like in the 1997 sci-fi film Gattaca. Insurance has always been an industry based on the ability to discriminate. The higher the risk, the higher the cost of coverage.

In the 1997 sci-fi film ‘Gattaca,’ a future is imagined where those with ideal, 'valid' genetics can pursue professions, and 'in-valids' must partake in menial work
In the 1997 sci-fi film ‘Gattaca,’ a future is imagined where those with ideal, 'valid' genetics can pursue professions, and 'in-valids' must partake in menial work Screen capture

The argument is not about insurance reform, but whether genetic predictive tests are a public good that should be exempt from commercial risk assessment.

At a 2014 Senate committee hearing, Privacy Commissioner Daniel Therrien said that only a few diseases can be determined through genetic tests and that the "probative value" of most tests are "very low."

Doctors are also reporting that many patients are refusing important genetic tests due to their potential affect on insurability.

In February, Dr. Ronald Cohn, co-director of the Centre for Genetic Medicine and a senior scientist at Toronto's Hospital for Sick Children, told a Senate committee about numerous cases where families and individuals refused next-generation genome sequencing tests. He believes they could be revolutionary in early treatment and possible prevention of life-threatening diseases.

"It is paralyzing for me as a clinician that I can't offer the best, optimal care to the patients and families I see in my clinic, because we are dealing with a lack of protection against genetic discrimination," he told the committee.

As for Senator Cowan's latest “Genetic Non-Discrimination Act"? In May, the bill has passed its first reading in the House of Commons, but crucially, does not include any mention of insurance industry regulation.

This is also the case with the U.S. Genetic Information Nondiscrimination Act passed in 2008, which does not apply to three types of insurance — life, disability and long-term care.

Direct-to-consumer DNA health kits also contain a vast amount of data that shouldn't be mistaken for medical diagnosis. In the U.S., the Food and Drug Administration filed a cease-and-desist order against DNA test kit 23andMe and warned consumers that these kits are not "intended for use in the diagnosis of disease or other conditions or in the cure, mitigation, treatment, or prevention of disease." The order was later lifted in October 2015 after 23andMe revised the kind of health information it provided to recipients. There is also concern about privacy and how companies use your DNA and personal data.

DNA genetic testing kit 23andMe offers Canadians health-related reports with the disclaimer that their 'reports are intended for informational purposes only and do not diagnose disease.'
DNA genetic testing kit 23andMe offers Canadians health-related reports with the disclaimer that their 'reports are intended for informational purposes only and do not diagnose disease.' Screen capture taken on Aug. 14, 2016

While the marketing for DNA genetic testing kits may promote "life-changing" insights about your health and ancestry, be aware that with Canada's existing privacy laws, those insights can also be used against you.

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About Robert J. Ballantyne

Robert J.Ballantyne is a senior editor at Popjournalism and Creative Director at Artsculture.ca. Previously, he was a journalist at the CBC on a number of news programs including the fifth estate, Marketplace and The National. He also worked as a staff writer at the Toronto Star.

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