Brynne Stainsby grew up knowing she had a good chance of being diagnosed with Huntington’s disease one day.
Her father has the gene that causes the degenerative brain disorder, so she was born with one-in-two odds of developing it herself. Symptoms of the disease typically appear when people are in their 40s or 50s, which means people at risk of the disease can spend much of their lives wondering whether they will eventually be diagnosed.
While Dr. Stainsby, a Toronto chiropractor, understood the odds and could anticipate the magnitude of the physical and emotional changes a diagnosis could bring, she didn’t realize that simply coming from a family with a history of Huntington’s disease could disqualify her for life or disability insurance. As she was preparing to start her own practice, she learned that it would be extremely difficult, if not impossible, to get covered if she indeed had the genetic variant that causes the disease.
“It was just so crushing and such a crazy realization,” she said. “It was just flat-out discrimination and completely out of my control.”
She was later tested and discovered she does not have the Huntington’s gene. Now 28, she is insured, but her case illustrates the ethical quandary of genetic testing in a real-world setting – an issue that could affect all Canadians in the future.
Advances in medical science are bringing us closer toward understanding the genetic underpinnings of disease, which could pave the way for new treatments or therapies. But a growing number of experts fear this progress could have serious unintended consequences for the public, allowing insurers and employers to use that information to deny coverage and benefits.
It’s a troubling dilemma that is bringing together medical experts and advocacy groups that want broad protections against bias based on a person’s genetic profile.
“We have no legislation against discrimination,” said Michael Hayden, Canada Research Chair in human genetics and molecular medicine at the University of British Columbia.
Canada is the only G8 country that doesn’t have laws to protect citizens against aspects of genetic discrimination, according to Dr. Hayden, who has worked with the Canadian Coalition for Genetic Fairness, which advocates for protections.
Dr. Hayden,one of the world’s foremost Huntington’s disease researchers, conducted a study published in the British Medical Journal in 2009 that found 30 per cent of those at risk for the disease reported discrimination in the form of rejection for insurance, premium increases or demands to undergo genetic testing.
“I think it’s quite significant,” he said.
Experts say the problem will only worsen as scientists continue to uncover specific genetic markers implicated in various diseases.
Although it’s becoming more common, genetic testing isn’t yet widespread across Canada. But as scientists identify more genes and genetic changes that are implicated in the development of disorders and diseases, it’s likely more individuals will choose to undergo predictive testing in the future.
Huntington’s disease is an obvious example of how genetic testing can be used to predict risk; if a person carries a specific genetic mutation, he or she will develop the disease. Many other diseases also have genetic underpinnings that scientists have narrowed in on. For instance, women with certain mutations on BRCA1 or BRCA2 genes have a higher likelihood of developing breast or ovarian cancer, while people with a particular variant of the apoE gene may have a higher risk of developing Alzheimer’s disease. People with a mutation on the CFTR gene could pass cystic fibrosis to their children, which could make it difficult for them to obtain certain types of insurance.
“From my perspective, I think it’s really about fairness for Canadians,” said Maureen Adamson, CEO of Cystic Fibrosis Canada. “Everybody has a different DNA. There should not be discrimination on that basis.”
But the Canadian Life and Health Insurance Association, a non-profit industry group, says it is still too early to determine what role genetic testing will play in the future. For instance, most genetic tests aren’t “sufficiently predictive” and can’t be used by insurance companies to make any decisions, said Frank Zinatelli, vice-president and general counsel for the association. He said the association believes that education about potential future uses of genetic tests is important and that problems can be addressed as they arise, but that it doesn’t make sense to create laws for an issue that doesn’t affect many Canadians.
“We’re at an early date to put in rules for a problem that doesn’t exist yet,” he said.
He added that while companies don’t require people to undergo genetic tests, they will use that information if it is available.
Others disagree, noting that genetic discrimination was deemed significant enough to spur the United States and many countries in Europe to enact legislation. The question of what information genetic testing may reveal and how it can be used shouldn’t be left up to insurance companies, said Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness.
There’s also another important reasons why genetic discrimination laws are necessary, according to Dr. Hayden. While genetic testing can single out potentially problematic changes in genes, they don’t tell the full story. In other words, a person with a mutation that’s thought to be negative may never go on to get a particular disease, while certain genetic changes can actually have a protective benefit.
Scientists are years away from understanding the full significance of these issues, which is why Dr. Hayden and others advocate rules preventing this information from being used in ways that could negatively impact Canadians.
“There’s a tsunami of information coming down the track,” he said. “We all will learn from it, but much of what we learn will be uncertain.”