July 2020 Update
(CCGF News Release: July 10, 2020)
The Canadian Coalition for Genetic Fairness (CCGF) commends the Supreme Court of Canada (SCC) for supporting the Genetic Non-Discrimination Act (GNDA), as it currently stands.
In May 2017, the GNDA received Royal Assent and passed into law. Prior to that date, Canadian law did not protect the genetic test information of Canadians. 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 decision to the SCC. That hearing took place on Oct. 10, 2019.
“This long-awaited decision is extremely reassuring and illustrates that the SCC recognizes the necessity for the pan-Canada protection of genetic test information by supporting the GNDA in this country,” says Bev Heim-Myers, Chair of the CCGF. “For many people living in Canada, the protection of genetic test information is paramount to their health and well-being. Fear of discrimination leads to individuals not having genetic tests and not making informed decisions which may be in their best interest.”
Approximately 91 per cent of Canadians feel that insurance companies should not be allowed access to their genetic information for an insurance assessment. Further, 90 per cent of Canadians opposed the notion that employers should have access to the genetic information of workers or job applicants (Government of Canada. Public Opinion on Genetic Information and Privacy. Pollara Research, Earnscliffe Research and Communications. 2003. Ottawa).
“Today’s decision of the SCC will be welcomed by all of us who care about controlling access to our genetic information,” says The Honourable James S. (Jim) Cowan, CM, QC, a former Liberal Senator (ret.) who sponsored the original private member’s bill. “All Canadians can take advantage of the critical advances in modern medicine made possible by genetic testing without fear that their private genetic data might be used in ways not authorized by them and in a way which discriminates against them. I am grateful to all of those who have been part of this successful journey”
“The decision has profound implications beyond its holding that the Genetic Non Discrimination Act is constitutionally valid,” adds Joseph J. (Joe) Arvay, OC, QC, the lawyer who presented the case on behalf of CCGF. “It may be fairly described as affirming an expansive view of Parliament’s jurisdiction to enact criminal law and ensures that with whatever novel yet harmful conduct that might arise in the next millennium, Parliament will have the powers to prohibit and punish that conduct where it poses a risk of harm, not only to public health but also to autonomy, privacy and equality.”
The CCGF has advocated for many years to ensure the genetic test information of all Canadians is protected. With over 76,000 genetic tests now available to help inform prevention, cures and treatment for genetic diseases, Canadians can now rest easier knowing that their personal and private DNA information continues to be protected.
Winter 2020 Update
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.