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Canadian insurance industry pens rules on use of genetic test results

Insurance companies will no longer ask individuals applying for life insurance up to $250,000 for genetic testing information or use any information from prior genetic tests.

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Canada's life insurance industry will announce new measures Wednesday that it says will protect consumers from genetic discrimination. But critics warn the changes won't stop Canadians from being unfairly targeted because of their genetic risk profile.

According to details of the voluntary pledge, insurance companies will no longer ask individuals applying for life insurance up to $250,000 for genetic testing information or use any information from prior genetic tests. Companies may use genetic testing information for individuals applying for greater amounts, but won't ask for results if tests were done for medical purposes and the applicant is unaware of the outcome and won't require family members to undergo genetic tests.

"What we wanted to do is ensure the vast majority of Canadians would be able to buy life insurance and not need to worry about this issue of genetic test results," Frank Swedlove, president and CEO of the Canadian Life and Health Insurance Association, said in an interview.

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Genetic discrimination has become an increasingly contentious topic in Canada as scientific advances make it possible for Canadians to learn whether they are genetically predisposed to certain types of cancer, rare diseases or other serious health conditions. Currently, there are thousands of tests that can identify whether a person is at risk of a particular disease, and this number is only expected to grow.

Proponents of a federal bill that would make genetic discrimination illegal say the industry announcement doesn't address the root of the problem and will still make Canadians vulnerable to insurers, employers and others that may use genetic testing results. Some are concerned the move by the insurance industry is an attempt to distract from or derail the bill, which would impose criminal penalties on anyone that uses genetic testing information in an insurance application, hiring decision or other means that could be deemed discriminatory. The bill, which originated in the Senate, passed second reading in the House of Commons late last year and it could pass third reading in the coming months, said Liberal MP Rob Oliphant, who sponsored the bill in the House.

"They've known about the problem of genetic discrimination for years and chose to really do nothing until the 11th hour," said Noah Shack, director of policy at the Centre for Israel and Jewish Affairs.

Mr. Shack said insurance is only part of the issue and that Canadians need protection from the host of ways companies, landlords, employers and others may use genetic testing results.

Mr. Oliphant said legislation is needed to protect Canadians from being unfairly targeted because of their genes.

"I don't think voluntary efforts, when it comes to discrimination, are ever appropriate. The reality is there is a power imbalance."

The insurance industry policy, which is slated to come into effect Jan. 1, 2018, would only apply to life insurance, not critical illness or other products. Wendy Hope, vice-president of external relations with the Canadian Life and Health Insurance Association, wrote in an e-mail that such products are "directly related to health status" and that not using or having access to genetic testing information "would make the cost of these products prohibitive."

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Mr. Swedlove said the industry's commitment will meet the needs of the 85 per cent of Canadians who have life insurance coverage of $250,000 or less and that as a result, new rules aren't needed.

"The bill isn't really necessary to meet the needs for the vast majority of Canadians," he said.

Mr. Swedlove added the bill could pose serious harm by allowing those genetically predisposed to serious health problems to purchase large amounts of insurance, which would drive up costs for everyone.

Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, said capping life insurance without genetic testing requirements at $250,000 is discriminatory in and of itself and unfairly targets those who might want or need more coverage.

Beyond insurance, she said the legislation is necessary because without it, Canadians might hesitate to undergo genetic tests that could help inform them of potential risks – information they could use to take preventive action.

"This is about the health and well-being of Canadians," Ms. Heim-Myers said. "This is about Canadians being able to make their own choices."

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About the Author

Carly Weeks has been a journalist with The Globe and Mail since 2007.  She has reported on everything from federal politics to the high levels of sodium in the Canadian diet. More

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