Patients, advocates push for law to keep genetic test results private

A Senate bill aimed at keeping the results of people's genetic tests private passed a big hurdle this week.

Bill S-201, which was at second reading, was referred to the Senate's human rights committee.

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News that the bill has moved one step closer to a third and final reading is welcome news to Vidalia Botelho.

The 44-year-old Gatineau, Que., woman had breast cancer, but would like to know for certain if she carries the gene mutation.

"It's really about my children now," said Botelho, who has a son and a daughter. "It's always in the back of my mind. Time goes by, and if they knew they carried the genes, they could be proactive rather than just reacting to the situation."

So far, she and her family have held off getting tested. If Botelho did carry the mutation, she would be forced to disclose the results to her insurance company.

"They have access to those results," Botelho told CBC News. "As soon as they know you've been genetically tested, they request to have access to those results, and it is considered to be part of your family history."

Advances in genetic testing have improved doctors' ability to diagnose and treat certain illnesses.

But thousands of Canadians have opted not to take the tests for fear it may compromise their career, lead to higher insurance premiums or hurt their chances of being eligible for life, critical illness or disability insurance.

Canada only G7 country without protection

Known as the genetic non-discrimination act, Bill S-201 would prevent employers, businesses and insurance companies from demanding people's genetic test results.

Canada is the only G7 country without any form of protection from genetic discrimination.

These tests can identify the increased risk of developing thousands of conditions and diseases, which can help people choose treatments.

Actress Angelina Jolie is the most high-profile example of this. After losing her mother to ovarian cancer, Jolie discovered she carried a faulty copy of the BRCA1 gene, which put her at very high risk of getting both breast and ovarian cancer.

She chose to have her breasts and ovaries removed to reduce her chances of developing the disease.

3rd time lucky?

So far, it's been an uphill battle for Liberal Senator James Cowan to have the bill pass the Senate.

The Nova Scotia senator first introduced the bill in early 2013, but it died when Parliament was prorogued.

He retabled the bill, but it was gutted last spring by the Senate's Conservative-dominated human rights committee.

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

Yesterday, the bill was again referred to committee, which will decide if it gets a third reading.

Cowan said insurance companies have a right to ask for medical history to predict future risk, but he argues that details of someone's genetic makeup should remain private.

He uses the example of two people with the same genetic makeup. One person decides to take a genetic test, and it shows a higher than average risk of developing heart disease.

That person chooses to make diet and lifestyle changes to reduce their risk.

The other person doesn't take the genetic test because they are worried about how it could impact their insurance or career. That person doesn't make any changes.

"(That person) drops dead of a massive heart attack at 45," said Cowan. "The insurance company has got to pay out the estate. For the other person, because they knew about their risk and changed their lifestyle, (they) don't drop dead at 45, but (they) can't get any insurance."

Cowan said the Liberal government has shown some signs it may be willing to remove the roadblocks many  people encounter when they consider genetic testing.

He's hopeful the timing may finally be right for the bill to pass.

"A number of Conservative senators who have spoken to me say they support the bill," said Cowan. "I hope if they were under any direction from the previous government, that's gone."

Rate hikes feared

The Canadian Life and Health Insurance Association warns that while the bill has good intentions, any benefits would be outweighed by the negative consequences.

Frank Zinatelli, the association's vice-president and general counsel, says if the insurance industry were prevented from asking for genetic test results, it would raise premiums for everyone.

"If we don't charge the right amount to one individual and then later we find out we made a mistake, we charged $100 when we should have charged $500 premium, then we are going to have to charge the next applicants to cover that extra $400," said Zinatelli.

"Really we are shifting the cost to other folks who are going to buy insurance later."

Zinatelli said if insurers aren't able to collect this information, a study by the Canadian Institute of Actuaries found that term insurance rates could increase 30 per cent for men and 50 per cent for women.

Average critical illness premium rates could also increase by 26 per cent overall.

Now that the bill has been referred to committee, hearings will be held.

If it passes third reading, it will then be sent to the House of Commons. Its approval is needed before the bill could become law.