Aug 12, 2020

11 years in the making: Supreme Court of Canada upholds Genetic Non-Discrimination Act (GNDA)

In the past decades, genetic testing has played a growing role in the diagnosis of inherited eye diseases such as retinitis pigmentosa, Usher syndrome and Leber Congenital Amaurosis. Not only can a genetic test information provide accuracy about how the eye disease will progress, but it also takes on a greater significance as new gene-specific treatments, such as gene therapy and gene editing are starting to be developed.  Without a genetic test result, individuals might not be eligible to participate in clinical trials or to receive these new treatments.

To protect the privacy of Canadians’ genetic test information, in 2009, Huntington Society of Canada, Fighting Blindness Canada (FBC), Parkinson Canada, and other leading Canadian health charities came together to be part of the Canadian Coalition for Genetic Fairness (CCGF), all meeting at Parliament Hill to discuss genetic discrimination, providing a voice for their patient communities. For 11 years, CCGF would work endlessly to advocate for the protection of genetic test information privacy, sharing real life stories from across Canada.

In May 2017, the Genetic Non-Discrimination Act (GNDA) received Royal Assent and became law. However, the Quebec government appealed this decision and did not agree that the GNDA was a valid act of Parliament’s criminal law power, putting the GNDA at risk and forcing the CCGF to refer it to the Supreme Court of Canada for their opinion.

What did unprotected genetic test information mean for Canadians? Simply put, if you had a genetic test done, the information was not private and could be used against you. This means it was possible for companies, such as insurance companies, to demand to see your genetic test information, which could be used to deny you coverage. Or an employer might use the genetic test information to make assumptions about your health and ability.

While the European Union (28 countries) were signatories to the Oviedo Convention that was first presented in 1997 (agreeing to not use genetic test information), Canada was falling behind.  As science evolved and genetic testing became more routine, researchers and medical experts came forth to express their concern and the need to protect the privacy of genetic test information.

Canadian researchers like Dr. Yvonne Bombard (a genomics health services researcher and Scientist at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto) voiced concerns that if the Canadian government did not protect genetic test information, people would be afraid to participate in clinical trials, putting research and future medical advancements in jeopardy. In a written testimony to the Standing Senate Committee Dr. Bombard stated,

“Genetic discrimination – the differential treatment of an individual based on genetic information – represents an important social risk associated with genetic testing. The extent and impact of genetic discrimination has been the subject of much public concern and policy attention.”[i] (access full testimonial and results from her study)

After many years of dedication and hard work, on July 3rd, 2020 the Supreme Court of Canada upheld the GNDA. Passing of the act was no easy task. CCGF experienced several barriers, including push back from insurance companies, government turnover, and the belief from some that genetic discrimination was not real.

Bev Heim-Myers, CCGF Chair explains,

“Getting to where we are today was not easy but it was a huge milestone for all Canadians and worth the fight.” Sharing further, “…years ago, many thought we were doing the impossible. Genetic discrimination –what was that? Conversations were business centred not patient centered. Together, we flipped the conversation.”

Champion volunteers came together from organizations like FBC to share their stories and get the attention of Parliament.

“People’s lives were being ruined based on perception,” Bev explains. “Seniors were being denied entrance into long-term care, children denied adoption –genetic discrimination was ruining lives and it was time that governments listened.”

For Bev and other CCGF representatives like Sharon Colle, former President and CEO of FBC, the fight to pass the GNDA was not about if, but when. The act’s undivided purpose was (and remains) to protect the health and privacy of all Canadians. And, as champion voices grew louder over the course of the 11 years it took to get the act in place, it was clear that the well-being of Canadians came first.

FBC is honoured to be part of this historic endeavor that will protect generations to come. With the support of our dedicated vision loss community, we brought a voice to the thousands of individuals living with inherited eye diseases and the millions of Canadians living with genetic conditions.

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[i] https://sencanada.ca/content/sen/committee/421/RIDR/Briefs/Bombard-UnivTorontoWrittenTestimony_e.pdf