Quebec cancer survivor welcomes Parliament vote to keep genetic test results private

The Genetic Non-Discrimination Act would remove the fear of financial repercussions that now stops many people from obtaining potentially life-saving genetic tests. Concerned about Bill S-201's constitutionality, the federal government now says it will refer parts of the bill to the Supreme Court.

Passed Wednesday night, Bill S-201 would make it illegal for insurers or employers to ask for test results

Validia Botelho, a 44-year-old breast cancer survivor and mother of two, would like to be genetically tested but has held off. If she is a carrier of the mutated gene, she would have to disclose the results to her insurance company. (Photo courtesy: Validia Botelho)

A Quebec mother and cancer survivor says Parliament's vote Wednesday night in favour of banning genetic discrimination by insurers and employers means "peace of mind" for her and others in her position.

Vidalia Botelho of Gatineau, Que., welcomed the news that Liberal backbenchers defied Prime Minister Justin Trudeau and voted in favour of Bill S-201, which would make it illegal for insurers or employers to ask for genetic test results.

Botelho will celebrate two years cancer-free next month, but her mind has not been at ease — she's worried she may carry the gene mutation that can increase her risk of developing ovarian cancer.

Until now, she's held off getting tested because she'd be compelled to disclose the results to her insurance company. 

The results would then be considered part of her family history, which could impact her children's insurance rates.

That would all change if Bill S-210 gets the royal assent it now needs to formally become law, but the vote came as a huge relief to Botelho.

"When I get tested or my children get tested, if there is ever something that shows up or if we're clear, it's just that peace of mind," Botelho said. "Not only that you are cleared of a certain illness, but also having all the information to be proactive ... and not wait until the end to go through chemotherapy or radiotherapy."

Vidalia Botelho, who had breast cancer, would like to know if she carries the the BRCA1 gene. (Courtesy: Vidalia Botelho)

Prime minister felt bill was unconstitutional

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.

"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 years to see it passed.

But not everyone was on the same page, most notably, Prime Minister Justin Trudeau.

Just hours before the third and final reading late Wednesday in the House of Commons, Trudeau said the proposed law is unconstitutional because it intrudes on provincial jurisdiction. He recommended the MPs vote against it.

But it was a free vote, meaning Liberal backbenchers could ignore him. The bill passed by a vote of 222-60.

Senator James Cowan first introduced Bill S-201in early 2013.

Cowan was stunned. He went into the evening vote cautiously optimistic.

"I thought the vote would be closer," said Cowan. "It was overwhelming. I didn't expect that kind of overwhelming vote."

Canada was the only country in the G7 that didn't have legislation like this, and Cowan is grateful to have played a role.

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

"This genetic testing, this personalized, precision medicine — this is the future," said Cowan. "We were behind. The legislation caught up to the science."

Done deal?

On Thursday, Justice Minister Jody Wilson-Raybould announced that she wants to refer the legislation to the Supreme Court.

"We are contemplating and wanting to move forward with putting a reference forward on the constitutionality of the genetic non-discrimination act," she said.

"We, as the prime minister articulated yesterday, have serious concerns about the constitutionality of one of the parts of the bill.... That concern remains."

The NDP's justice critic, Alistair MacGregor, said the party was disappointed in the decision to refer the bill to the country's top court.

"The overwhelming majority of witnesses, including noted constitutional experts, clearly supported the bill," MacGregor said. 

"Unfortunately, the Liberal government seems more inclined to represent the interests of insurance companies than the interests of Canadians who are at risk of losing insurance coverage."

Much of the opposition to the legislation has come from the Canadian insurance industry.

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

In a statement, the Canadian Life and Health Insurance Association said it was extremely disappointed the bill was passed.

"The industry agrees with the federal government's position as expressed by the Prime Minister and the Minister of Justice, as well as a number of provinces, that an important element of the Bill is unconstitutional," the association stated.

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

During hearings into the bill, the insurance industry changed its code on genetic testing and committed to not asking for genetic testing information for life insurance applications below $250,000. 

"This ensures the middle class can continue to afford the protection they need," the statement read.

The insurance association is reviewing the impact this bill will have on consumers and is considering its options.

But Cowan doesn't think they'll give up.

"I don't know what mechanism it will be, but it would have to get before a court," said Cowan. "A province could also challenge it."

However, he says most of the provinces he spoke to were already looking at their own human rights and labour codes to see if any adjustments needed to be made.