Physicians and patient advocacy groups say they support a proposed change to the Ontario Human Rights Code aimed at protecting people’s genetic information from being used by insurance companies and employers.
People will avoid getting genetic tests that could detect a predisposition for potentially life-threatening diseases and will not participate in research and clinical trials if they have to disclose the results, especially to insurers, the Coalition for Genetic Fairness said on Monday.
“We know that science has outperformed legislation and it is time that we caught up and protected individuals,” said Bev Heim-Myers of the Huntington Society of Canada, one of 16 patient groups in the coalition.
“Insurance companies are making definitive decisions based on probable information … a future perceived disability, a chance that this person could have a disease.”
Canada is the only G8 country not to protect genetic information, she added.
Liberal backbencher Michael Colle, who introduced a private member’s bill Monday, hopes to change that.
“Genetic testing is going to be the norm in just a few years, everyone’s going to have it,” said Mr. Colle. “But if there’s this fear that if you do this testing and share the information you’re going to be punished, it’s going to be a countervailing force. It’s time to do this before all the testing is available in the very near future.”
Some people are already being denied insurance because they have a genetic predisposition for a particular illness, even something that many people live with, such as celiac disease, said Yvonne Bombard of St. Michael’s Hospital in Toronto.
“If someone is an applicant for an insurance policy and they tick off ‘yes I have a family history of x, y, z in my family,’ then unofficially they’ll be asked by the insurance agent, ‘have you undergone genetic testing for that disorder,’” she said.
“Individuals at risk for more common diseases such as breast, ovarian or colon cancer are unduly discouraged from undergoing genetic testing and participating in genetic research because of concerns of how their genetic information might be misused by third parties such as insurers and employers.”
Ronald Cohn, who runs a DNA research lab at Toronto’s Hospital for Sick Children, said many parents are afraid to have their child tested or participate in clinical trials because of a fear of genetic discrimination.
“We have families who say, ‘As much as I would like to find out what’s wrong with my child, I can’t do it because I’m afraid of genetic discrimination,’ ” said Dr. Cohn, who recently had his DNA sequenced and found a slightly higher risk of a thyroid cancer.
“I was glad that I had my insurance in place.”
Part of the problem with not protecting the genetic information is it can be used not only against the patient, but against the next generations in their families too in cases of hereditary diseases like breast cancer, Ms. Heim-Myers warned.
“They would not be able to get insurance either,” she said. “You’re putting it out there for your whole family.”
The Insurance Bureau of Canada declined comment and referred reporters to the Canadian Life and Health Insurance Association, which did not immediately respond to requests for comment on Monday.