Genetic test use by insurance firms discouraged by privacy watchdog

Use of genetic test results by insurance companies isn't justified, says Canada's privacy watchdog in urging insurers not to use them in assessing risk.

Protecting privacy in the face of advances in the science and technology of genetic testing is becoming challenging, the Office of the Privacy Commissioner of Canada says.

The tests can be used to see whether someone is at increased risk of certain medical conditions based on their genomic data. The tests have become easier to access for details about ancestry and future health.

• Personal DNA test maker seeks FDA approval in U.S.
• Rare childhood disease diagnosis clues a comfort to families
• Home genetic testing

"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," Daniel Therrien said in a statement on 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."

Concerns have been raised about the potential for people to decline tests over fears the findings could lead to discrimination from insurance companies or employers.

The Canadian Life and Health Insurance Association, a non-profit industry group, said the industry should not require someone to get genetically tested before applying for insurance. But if the tests have already been conducted, insurance companies should be able to request the results.

Insurance group says genetic testing use 'necessary'

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," Zinatelli 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."

There are no laws in Canada that specifically prohibit genetic discrimination. In October last year, Bill S-201 was introduced in the Senate with the aim to "prohibit and prevent genetic discrimination." If passed, insurers' access to the information would be limited.

A spokeswoman for the federal justice minister applauded the privacy commissioner's work.

"We reiterate the commitment made in our government’s throne speech to preventing employers and insurance companies from discriminating against Canadians on the basis of genetic testing," Mary Ann Dewey-Plante said in an email Friday. "Safeguarding families and our communities is a priority for this government, and we recognize that Canadians expect privacy when it comes to personal genetic information."

Geneticists also question the scientific credibility of some test kits.