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 Act — would make it illegal for insurance companies or employers to request genetic testing or ask for test results.
Insurer asks for genetic test
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 it too.
At 25, on the verge of starting her chiropractic career, Stainsby didn't give much thought to her possible diagnosis until she tried to get insurance.
'What they were saying was, until I tested myself I 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 myself I 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.
Nearly 35,000 genetic tests
The bill proposes amendments to the Canadian Labour Code and the Canadian Human Rights Act to make it illegal to discriminate against people based on their genetic characteristics.
Right now, there are nearly 35,000 tests that 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 James Cowan, who has championed Bill S-201 since 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 losing their jobs.
Insurance premiums could rise
The bill will have its third and final reading this week in the Senate.
If it passes, it will be added to the list of 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, the Liberal MP from Toronto who is sponsoring the bill if it moves into the House of Commons, said he's heard the industry's protests but doesn't understand its reasoning.
"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 said she 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 impact Huntington's was having on me," said Stainsby.
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Stainsby's father was in his 40s when he got tested for the gene. His test was positive, but Stainsby said he 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 less coverage 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 been discriminated against in the first place.
Stainsby said the 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."