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Stop asking for results of genetic tests, privacy watchdog asks insurers

Daniel Therrien is pictured in Ottawa on June 3, 2014. THE CANADIAN PRESS/Sean Kilpatrick

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Daniel Therrien is pictured in Ottawa on June 3, 2014. THE CANADIAN PRESS/Sean Kilpatrick

OTTAWA - Canada's privacy watchdog is urging insurance companies and others to stop asking for access to the results of existing genetic tests at this time.

Privacy Commissioner Daniel Therrien says it is becoming more of a challenge to protect people's genetic privacy with recent advances in science and technology.

"We are calling on the industry to refrain from asking for existing test results to assess insurance risk until the industry can clearly show that these tests are necessary and effective in assessing risk," Therrien said in a statement Thursday.

"This would allow people to undergo genetic testing for various purposes without fear that the results may have a negative impact if they apply for insurance."

There are now hundreds of genetic tests available to help spot genes known to increase a person's risk of developing certain medical conditions.

But some people may decline tests for fear a positive result may mean they could face discrimination from insurance companies or their employers.

"It is not reasonable and not necessary for the insurance industry to ask for genetic information when they're making their decisions," said Bev Heim-Myers of the Canadian Coalition for Genetic Fairness.

"They already have a lot of information that they can have access to."

There are currently no laws in Canada that specifically prohibit genetic discrimination, although there appears to be broad political consensus around the issue.

The most recent Conservative throne speech promised to stop employers and insurance companies from discriminating against Canadians on the basis of genetic testing.

Last year, the Liberal leader in the Senate introduced legislation that would stop insurance companies and others from discriminating against people who are genetically susceptible to some diseases.

Past Conservative and Liberal election platforms pledged to stop discriminatory life insurance practices, while the New Democrats once introduced a private member's bill in the House of Commons to ban "genetic characteristics" as grounds for discrimination under the Canadian Human Rights Act.

The Canadian Life and Health Insurance Association, a non-profit industry group, has taken the position that the industry should not require someone to get genetically tested before applying for insurance.

But the association says that if such testing has already been done and the results have been shared with the applicant or their doctor, insurance companies should be able to request the information.

Frank Zinatelli, the association's vice president and general counsel, said he has some concerns about the privacy commissioner's statement.

"It asserts that genetic-testing information is not necessary for assessing the risk. We believe that it is," he said.

"These are necessary pieces of information that can help the industry where the tests are valid to properly assess the level of risk that an applicant is bringing to the table when they apply for insurance."

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