Experts in genetics and medical ethics say a bill currently before the Senate intended to prevent genetic discrimination is long overdue and its absence is preventing people from getting diagnoses that could help them.
"There's no protection against genetic discrimination at all," Dr. Ronald Cohn, chief of genetics at the Hospital for Sick Children in Toronto, told CBC News.
Bill S-201 — also known as the Genetic Non-Discrimination Act — passed second reading in the Senate earlier this week. The legislation would specifically prohibit insurance companies, employers and other third parties from accessing people's genetic test results.
Cohn said he talks to parents "who have been looking for an answer for their child's condition for years" and are initially excited when they find out there is a genetic test that could potentially provide an answer.
But many families decline to have the tests performed out of fears there will be insurance or employment consequences, Cohn said.
"Finding yourself in a situation where you offer somebody a test and then they say 'I would love to do it but I'm afraid to,' it's somewhat paralyzing," he said.
Bill concerns insurance industry
Cohn said he never had this issue when he practised in the U.S., because legislation had been put in place. Canada is the only G7 country without a law specifically addressing genetic discrimination.
But Frank Zinatelli, vice-president and general counsel to the Canadian Life and Health Insurance Association, said that's an unfair comparison, because the insurance and health-care systems are different in each G7 country.
Zinatelli said that insurance companies can only ask for genetic test results when people are applying for insurance or changing their policies, and that coverage would not be affected by a genetic test after they had already obtained insurance.
Bill S-201, Zinatelli argued, would undermine the "basis of insurance," where both parties have "equal information" at the time an insurance policy is purchased.
"If we don't charge you the proper amount, then somebody's going to have to make that up down the road, and that's new policy holders that buy insurance afterward," he said.
Zinatelli said the industry's "key concern" is that people could abuse the system after learning the results of a genetic test.
"What is human nature?" he asked. "[If] somebody in my family … discovers that they have this real risk … and we also know that the rules say that you don't have to disclose it to your company, I'm going to suggest to that member of my family that they go and load up on the maximum amount of insurance that they can."
Law failing to keep up with science
Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington (Disease) Society of Canada, said that has not been happening.
"Genetic information is complicated, it's not clear," she said. "The prediction is based on a perceived future disability, not an actual disability. So people are not inclined to top up their insurance.…They don't want to be paying this high premium on a higher coverage."
Ottawa employment lawyer Karen Jensen said legislation against genetic discrimination in the workplace wasn't necessary because employees are already covered by existing human rights law and labour legislation in Canada.
"We have pretty robust protections," Jensen said. "Very little information is legally permitted to be disclosed to employers."
Jensen said she could only speak to employment-related concerns about genetic discrimination and could not address people's worries about insurance companies, except to say that insurers are not allowed to pass along any medical information to employers.
But Heim-Myers said she knows of people who have been fired from their jobs after their employer learned they had a genetic condition. Existing human rights legislation is vague, she said, and puts the onus on people to prove genetic discrimination, rather than protecting them against it in the first place.
"This bill is incredibly important because it is a deterrent to genetic discrimination," she said. "This is a true case where science and technology[have] outperformed legislation."
University of Toronto bioethicist Kerry Bowman agreed that Canadian laws have failed to keep up with advances in genetic testing and said having legislation like Bill S-201 "becomes more important with each passing year."
"The amount of genetic information that we have about ourselves and our families is growing and it's growing rapidly," he said. "We really need this. It has very different meaning than it did even 10 or 15 years ago."
"We see people that are not wanting to be tested because they fear genetic discrimination for themselves and potentially for their family," Bowman added. "Can I say to them there's nothing to worry about? I can't say that because there might be a lot to worry about."