Senate passes bill to keep genetic test results private

Canada's Senate has adopted a bill that would keep the results of genetic tests private, preventing insurance companies and employers from discriminating against people based on their genes.

Canada only G7 country with no protection against discrimination based on genetic makeup

Vidalia Botelho is a breast cancer survivor who has held off on genetic testing for the BRCA1 or BRCA2 mutation because she doesn't want to be compelled to disclose the results to her insurance company. (Vidalia Botelho)

The Senate has adopted a bill that would prevent insurance companies and employers from getting their hands on Canadians' test results for genetic diseases or conditions.

Bill S-201, also known as the Genetic Non-Discrimination Act, would remove the fear of financial repercussions that now stops many people from obtaining potentially life-saving genetic tests — keeping test results private and making it illegal for insurers or employers to request them.

"Knowing that one has a genetic predisposition to developing a particular disease or condition is power," said Senator James Cowan, who shepherded the bill through the Senate and fought for three years to see it passed.

Senator James Cowan first introduced Bill S-20, also known as the Genetic Non-Discrimination Act, in early 2013.

Having those test results can help people reduce the likelihood of developing a disease, through lifestyle changes, closer monitoring or pursuing treatment options.

But many people forego the tests, worried if they test positive, their insurance premiums will climb or they'll be unable to obtain insurance at all. 

Cowan said there is evidence of Canadians being sidelined at work, forced into early retirement or put under increased surveillance after their employer became aware of their genetic test results.

Getting a genetic test is a personal decision, Cowan points out, but fear of repercussions shouldn't factor into it.

Next hurdle: House of Commons

Now that the bill has the Senate's stamp of approval, it moves on to the House of Commons.
MP Rob Oliphant says a proposed law to prohibit discrimination based on genetic characteristics 'should promote better health' by encouraging people to get genetic testing. (CBC)

Liberal MP Rob Oliphant, who will sponsor it and work with Cowan to build support across party lines, said he's hopeful the bill will pass into law quickly.

"We're the only country in the G7 that doesn't have legislation like this," points out Oliphant, who represents the Toronto riding of Don Valley West. "I think we're doing the government a favour by getting this legislation in."

The timing is good: With a relatively new government, there aren't a lot of other bills up for debate.

Holding off on tests

"It's a good starting point," said Vidalia Botelho of Gatineau, Que. "For me, it could open up some doors and possibilities."
Vidalia Botelho says if genetic test results were private 'it could open up some doors and possibilities' for her. (Courtesy: Vidalia Botelho)

Botelho, 44, was diagnosed with breast cancer in 2014 and underwent a double mastectomy, as well as chemotherapy and radiotherapy.

She has no family history of breast cancer, but she'd like to know for sure whether she carries the gene mutation, so her children will know if they need to be closely monitored or take precautions.

Mutations in the breast cancer genes (BRCA1 and BRCA2) can also increase the risk of developing other cancers in both men and women, including ovarian cancer.

"I still have my ovaries," said Botelho. "I'd like to know if there are risks."

A genetic test is as simple as providing a blood sample or a cheek swab, however, Botelho has held off getting tested because, with no legal protection now in place, she'd be compelled to disclose the results to her insurance company.

Once an insurance company requests access to those results, it would be considered part of her family history, which could impact her children's insurance rates, said Botelho.

Insurance industry's concerns

The Canadian insurance industry has long opposed the legislation. 

It has forecast dramatic increases in premiums for both life and critical illness insurance, if insurers are no longer privy to test results.

Without access to those results, assessing future risk would be difficult, it says.

"Some folks who want insurance may be priced out due to this increase," said Frank Zinatelli, vice-president and general counsel for the Canadian Life and Health Insurance Association.

Zinatelli points out that, as it stands now, the industry requires people to disclose test results. But if they already have a policy, the premium on that policy does not change.

It would only change if they tried to alter that policy or get a new one.

"Once a policy is in place, our promise is made," said Zinatelli. "The price stays at the guaranteed price."


Leah Hendry is a TV, radio and online journalist with CBC Montreal Investigates. Send tips to