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The Genetic Non-Discrimination Act

Winter 2020 Update

Bev Heim-Myers, 
Chair, Canadian Coalition for Genetic Fairness

The Canadian Coalition for Genetic Fairness (CCGF) comprises a group of organizations dedicated to preventing genetic discrimination against individuals, based on their genetic test information. CCGF advocates within governments (at the federal, provincial and territorial levels) to create positive changes for the HD community and all Canadians. The Huntington Society of Canada (HSC) and the HD community have been strong supporters of this issue.

In May 2017, the Genetic Non-Discrimination Act (GNDA) received Royal Assent and was passed into law. Prior to that date, genetic test information of Canadians was not protected. Parliament enacted the GNDA pursuant to its criminal law power as a response to expert evidence that showed some Canadians avoided taking genetic tests, despite knowing about their potential health benefits. The GDNA empowers all people living in Canada with the chance to make informed decisions regarding health and reproduction, without fear of genetic discrimination.

In December 2018, the Cour d’ appel du Québec (Québec Court of Appeal) gave its opinion that the GNDA does not constitute a valid exercise of Parliament’s criminal law power. The Québec opinion did not overturn the GNDA, but did put the GNDA at risk.

In response to the opinion of the Québec Court of Appeal, CCGF filed a notice of appeal, referring the case to the Supreme Court of Canada (SCC). The appeal was accepted in January 2019 and this officially made CCGF an appellant at such time when the case would be heard at the SCC.

The SCC hearing took place on Oct. 10, 2019 in Ottawa, ON. I was fortunate enough to attend and was joined by Senator Jim Cowan (ret.), and his former Senior Policy Advisor, Barbara Kagedan, who continue to remain very engaged with this file and whose historical knowledge and guidance is critical moving forward.   Of course, the CCGF legal team also attended and, as you would expect, our lawyers did an excellent job in presenting CCGF’s perspective.

The GNDA still remains as federal law. Genetic test information remains protected for people living in Canada.  As soon as we are advised of the opinion of the SCC (sometime in 2020), we will be sure to update you.

CCGF thanks our team of lawyers, Senator Cowan and Barbara Kagedan for their continuing hard work on this file, on behalf of all people living in Canada.

What can Canadians do?

Our communities need to let their MPs know that this was a great example of the people being heard by our government and the decision to provide pan-Canada protection for genetic test information should not be overturned by anybody.

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