Genetic-testing bill to get final reading in Senate this week

Brynne Stainsby knows what it's like to be discriminated against based on her genes.

That's why she's keeping a close eye on a Senate bill up for final debate this week.

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Bill S-201 also known as the Genetic Non-Discrimination Actwould make it illegal for insurance companies or employers to request genetic testing or ask for test results.

Insurerasks for genetictest

Canada is the only G7 country without any form of protection for people based on their genetic makeup.

Stainsby's father has the genetic mutation that causes Huntington's disease, a degenerative brain disorder, giving her a 50/50 chance of having ittoo.

At 25, on the verge of starting her chiropractic career, Stainsbydidn't give much thought toher possible diagnosisuntil she tried to get insurance.

What they were saying was,until I tested myselfI was sort of guilty until proven innocent.Brynne Stainsby, whose father has Huntington's disease

She was shocked to learn she'd be denied coverage unless she underwent genetic testing to prove she didn't have the genetic mutation.

"It was really devastating and infuriating, actually," said Stainsby.

"Basically, what they were saying was,until I tested myselfI was sort of guilty until proven innocent."

She's never forgotten the sting of that rejection.

"I love that our citizens are protected on so many levels, but it's devastating that this isn't one of them yet," said Stainsby. "This should be another of our basic human rights.

Nearly35,000 genetictests

The bill proposes amendments to the Canadian Labour Code and the Canadian Human Rights Act tomakeit illegal to discriminate against people based on their genetic characteristics.

Right now, there are nearly35,000 teststhat can identify a person's risk of developing thousands of conditions and diseases.

"There's an increasing number of genetic tests for an increasing number of conditions, and as the tests become more precise, the issue becomes more important," said Senator JamesCowan, who has championed Bill S-201since 2013.

With this kind of personalized medical information, people can make lifestyle changes, choose to be monitored more closely, participate in clinical trials and even opt for pre-emptive treatments for some conditions.

But many people forgo the tests for themselves or their children, worried they will be denied insurance coverage,face inflated premiums or risk losingtheir jobs.

Insurance premiums could rise

The billwill have its third and final reading this week inthe Senate.

If it passes, it will be added to the listof proposed new laws to be considered by the House of Commons.

So far, the bill's most outspoken critic is the Canadian insurance industry, which predicts premiums will go up for everyone if companies are denied access to genetic test results.

Rob Oliphant, theLiberal MP from Toronto whois sponsoring the bill if it moves into the House of Commons, said he'sheard the industry's protests but doesn't understanditsreasoning.

"If anything, this should promote better health among people," said Oliphant, who predicts lower insurance payouts if the bill becomes law.

"People will actually be able to be proactive about their health."

Blacklisted for insurance

Without proof that she was free of the mutated gene for Huntington's, Stainsby saidshe was blacklisted by the majority of insurance companies.

It didn't matter to the insurance industry that she was a non-smoker, an active runner or yoga instructor.

It zeroed in on the one thing she didn't have control of her genes.

"That was the first time that I really realized the impactHuntington's was having on me," saidStainsby.

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Stainsby's father was in his 40s when he got tested for the gene. Histest was positive, but Stainsby saidhe remains symptom-free almost 20 years later.

"My dad has been able to work.He's already retired, he's had this wonderful career," said Stainsby. "So if we're looking at genetics, I could be going down basically the same path."

However, the insurance company wanted cold, hard proof.

She settled for lesscoverage than she wanted with a smaller insurance company that only asked about her personal health history.

A few years later, Stainsby finally went to get tested. The results came back negative for the Huntington's mutation.

She was able to upgrade her insurance policy right away, but she resents having beendiscriminated against in the first place.

Stainsby saidthe federal government has recognized"just about every other major issue we'd hope to be protected from our race, our religion, our skin colour, sexual identity."

"Everything is protected, except genetics," said Stainsby. "We have to have that protection."