Genetic test results should be kept confidential, local advocate says

Genetic testing can provide Canadians with a lot of information about their health, but fear those results will be shared with insurance companies and potential employers has some people holding off.

People avoid testing because of fears over who can access the information

Bill S-201 — the Genetic Non-Discrimination Act — would prohibit the disclosure of genetic test results to employers, insurance companies and other third parties. Medical experts and advocates say the legislation is needed to keep up with the increased availability of genetic information, but the insurance industry says it could lead to unfair coverage. (Gerald Herbert/Associated Press)

Waterloo region residents who are hesitant to get genetic testing done because they are afraid that information could be used against them when trying to get insurance or a job are not alone, one local health advocate says.

Bev Heim-Myers, the chief executive officer of the Huntington Society of Canada, which is based in downtown Kitchener, said genetic discrimination is "absolutely an issue in Canada" because it's the only G7 country that doesn't protect test results from being used by insurance companies and potential employers.

Bev Heim-Myers is the CEO of the Huntington Society of Canada.
Heim-Myers says that while advances in science provide opportunities for personalized care, early diagnosis and treatment, there's a risk that information can be used against the patients too.

"As our information grows, so does the risk of people using genetic test information against individuals," she said in an interview with CBC News.

One study, published by University of British Columbia researchers in 2012, found that 86 per cent of people at risk of developing Huntington's disease said they were afraid genetic testing information would be used against them. Huntington's is a progressive genetic disease that leads to mental and physical problems, including muscle spasms, lack of coordination and dementia.

"Most of those people are afraid because of their children or their relatives. They're afraid of the genetic testing and outing other members of the family," Heim-Myers said.

Coverage denied

Heim-Myers has heard of multiple cases where either genetic testing information has been used against a person, or where someone has been told they need to get the testing done before they could be insured.

In one case, a young woman wanted to open her own chiropractic office. She had family members who had Huntington's disease, but did not have it herself.  The woman was forced to prove through testing that she did not have the genetic mutation, so she could get the life insurance she needed to start her own practice.

In another case, a young man had testing that showed he was predisposed to having celiac disease, where people cannot eat gluten. While completely manageable, Heim-Myers said the man was denied life insurance based on those test results.

Then there is the BRCA gene, which can be hereditary, and is linked to breast cancer. Testing for this gene made headlines when actress Angelina Jolie had the testing done and found she had the gene, then had a double mastectomy as a precautionary measure.

Angelina Jolie had a double mastectomy after genetic tests showed she has an increased risk of breast and ovarian cancer. (Jason Merritt/Getty Images)

Heim-Myers says she knows of a mother who had the BRCA gene. Her one son tested for it and results showed he also was a carrier of it. Her other son refuses to be tested because he fears discrimination for him and his daughter.

Fear of discrimination

Insurance companies want to make a profit, said Samantha Meyer, an assistant professor at the school of public health at the University of Waterloo, whose research focuses on population health and the importance of genetic testing.

People already make excuses not to go to the doctor, and knowing their personal information could be released to insurance companies is another reason for many not to have genetic testing done, she said.

"We're concerned about protecting individuals and making sure the services they have access to are available and are used by as many people who are choosing to undergo that genetic testing," Meyer told The Morning Edition host Craig Norris on Tuesday.

Third time for bill

Bill S-201 from Senator James Cowan would protect the information gathered in genetic tests has already passed two readings in the Senate.

Now, hearings will be held before a third reading. If the bill passes the third reading, it will be sent to the House of Commons for approval before becoming law.

This is the third time Cowan has tried to get the bill passed - in early 2013, it died when Parliament was prorogued and then it was gutted last spring by the Senate's human rights committee.

They're afraid of the genetic testing and outing other members of the family.- Bev Heim-Myers, CEO of the Huntington Society of Canada

The bill proposes amendments to both the Canada Labour Code and the Canadian Human Rights Act.

Heim-Myers said it is unclear why Canada is alone in having taken a "wait and see" approach to dealing with genetic testing information.

But she's hoping that the third time for the bill is the charm.

"Early indicators are favourable," she said. "Having this information is better for the health and well-being of all Canadians."


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