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Cancer group hopes new non-discrimination law will encourage more genetic testing

WATCH: Right now if patients learn they have a genetic risk for disease they must tell their insurance provider, but as Heather Yourex-West explains that could soon change.

At the age of 45, Amanda Nelson has already faced cancer twice.

“I was diagnosed in 2012,” she said. “There was no history of ovarian cancer on either side of my family, but there was lots of cancer on both sides, including breast cancer.”

Nelson has a BRCA-2 gene mutation which leads to an increased risk for both ovarian and breast cancer.  She’s now faced both, ovarian cancer in 2012, which is now in remission and most recently, breast cancer.

READ MORE: Genetic non-discrimination bill unconstitutional: Trudeau 

Women who know if they possess the BRCA-1 or 2 genetic mutations are able to take action to lower their cancer risk but getting genetic testing can have consequences of another kind.

“Right now, we know that women are not having tests because they are afraid their private insurance rates will skyrocket or that their employer may take action that would result in impacting their employment status,” said Elisabeth Baugh, CEO of Ovarian Cancer Canada.

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Ovarian Cancer Canada has been lobbying the federal government to implement a law that would protect patients from discrimination and earlier this year, their efforts were successful.

The Genetic Non-Discrimination Act, also known as Bill S-201, passed its third and final vote in the House of Commons in March and is now awaiting royal assent.

The legislation would, among other things, make it illegal to require someone to undergo or disclose the results of genetic testing as a condition of signing or continuing an insurance policy or any other good, service, contract or agreement.

Maximum penalties would include a fine of up to $1 million, or five years behind bars.

READ MORE: MPs to debate controversial bill on genetic testing after intense lobbying 

The legislation has faced stiff opposition from both the insurance industry and the Liberal government, which has expressed plans to turn the law over to the Supreme Court of Canada as soon as it takes effect.

“I think they believe there’s infringement on the provincial jurisdiction and federal jurisdiction there,” Baugh said. “Our legal advice is that there isn’t and we are really hoping that the government will see how important this is to all Canadians.”

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Gynecological oncologist, Dr. Sarah Glaze, says women with a family history of breast or ovarian cancer should know which genes they carry.

“Even if they have one cancer, they still need to know about the genetic risk so they can prevent cancer in other parts of their body.”

Genetic testing can also help prevent cancer in the children of cancer patients because mutations like BRCA-1 and 2 carry a 50 per cent chance of being passed on.

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