Door will open to genetic discrimination if act protecting Canadians is overturned, genomics expert says

Medical researcher Yvonne Bombard is worried about a future where Canadians could face increasing discrimination based on their genetic profiles.

A genomics and policy researcher with the Li Ka Shing Knowledge Institute at St. Michael's Hospital in Toronto, Bombard says the health and personal freedom of patients will be at risk if a challenge to Canada's year-old Genetic Non-Discrimination Act (GNA) is successful.

Along with Bev Heim-Myers, CEO of the Huntington Society of Canada, Bombard authored a commentary on the issue published Monday in the Canadian Medical Association Journal (CMAJ). 

The act, which became law May 4, 2017, makes it a criminal offence to enter into any kind of contract that requires a person to disclose the result of a genetic test.

The Quebec government is challenging the constitutionality of the act by referring it to the Court of Appeal of Quebec, arguing that by making it illegal to deny a service based on someone's genetic test results, the act infringes on the regulation of the insurance industry — a provincial jurisdiction.

But Bombard told CBC News the issues at stake go far beyond insurance, and that it would be a mistake to overturn the act. "It's important because it's about ensuring Canadians have access to the best possible health care and can make the best possible health-care decisions for themselves, without being fearful of having their genetic test results used against them."

Downside of a great leap forward

As scientists have come to know more about the human genome, they've made great strides in developing tests that allow physicians to diagnose patients accurately and improve outcomes, says Bombard.

But there's a downside, she says. 

Canadians have been faced with paralyzing decisions, "to either take a genetic test that can provide an answer, a diagnosis for an illness that someone is suffering from — or that their child is suffering from — or on the other hand, place themselves and their family at risk for genetic discrimination."

Bombard's research has uncovered cases where people experienced genetic profiling, including denial of insurance required to get a small business loan, being passed over for a promotion at work, not being approved to be an adoptive parent and problems in court affecting custody and access of their children.

Even a test that turns out to be negative can create problems.

Because of a family history of Huntington's disease, Brynne Stainsby decided to get tested for the condition seven years ago, at age 27. She says she was tremendously relieved to test negative, but when she subsequently applied for life insurance along with her business partners, her policy took many more steps to secure.

"The other two partners had received the all clear and I hadn't," says Stainsby, despite the fact that she's the youngest of the three. Stainsby had sent in her negative Huntington's test result at the beginning of the process, but the insurer still contacted her family physician for additional confirmation and documentation.

Insurance companies say act goes too far

Stephen Frank, president and CEO of the Canadian Life and Health Insurance Association, says insurance companies need access to that information. "What we don't want to have happen is that an individual gets a test result and then orders a very large insurance policy. If we don't understand the risk, we can't price it accordingly."

He says banning any contracts that take genetics into consideration is "too blunt a tool." 

"If we don't get this balance right, one of the ways insurance companies will protect themselves is that we'll have to increase prices across the board. You could end up with a situation where fewer Canadians are insured."

In an email to CBC News translated from French, a spokesperson for Quebec's minister of justice reiterated the province's position. "Quebec considers that the new law on genetic non-discrimination adopted by the federal Parliament is unconstitutional," said press secretary Isabelle Marier St-Onge, in the email. 

"Quebec, as always, intends to fully enforce its jurisdiction, particularly with respect to property and civil rights. We will present our arguments at the appropriate time before the court."