Recent Updates

Last Updated: September 2019

HORIZON ARTICLE (FALL 2019): GENETIC NON-DISCRIMINATION ACT UPDATE

Prior to May 2017, the genetic test information of Canadians was not protected. On May 4, 2017, the Genetic Non-Discrimination Act (GNDA) received Royal Assent and was passed into law. This historic law, which passed third reading in the House of Commons by a vote of 222 to 60 in May 2017, enabled all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enabled Canada to remain as a leader in genomic research and has already helped to alleviate the fears of Canadians, thus encouraging participation in genomics research and clinical trials.

In late 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. It is important to note that the Québec Court of Appeal just provided an advisory opinion on the specific questions referred to them, however, this opinion does put the GDNA at risk.

The Canadian Coalition for Genetic Fairness (CCGF) filed a notice of appeal, as the appellant, referring the Québec Court of Appeal’s decision to the Supreme Court of Canada (SCC).  The notice of appeal was accepted, as of right, in mid-January.  That means that the CCGF will be the appellant as this case moves to the SCC.

The Attorney General of Canada, Attorney General of Québec, Attorney General of BC and the Attorney General of Saskatchewan, each filed a notice of intervention.  The Canadian Life and Health Insurance Association, Canadian Human Rights Commission (CHRC), Privacy Commissioner of Canada (PCC) and Canadian College of Medical Geneticists (CCMG) have also applied for leave to intervene.  The CHRC, PCC and CCMG all support the position taken by CCGF. All parties that applied to intervene were given intervener status.

The hearing at the SCC is currently scheduled to take place on October, 10 2019.

Today, the Genetic Non-Discrimination Act is still law, but it is threatened.  The CCGF will continue to work with our team of lawyers to ensure that the GNDA stays as law to protect the genetic test information of all people living in Canada.

NEWS RELEASE: CANADIAN COALITION FOR GENETIC FAIRNESS STATEMENT ON THE QUEBEC COURT OF APPEAL DECISION REGARDING THE GENETIC NON-DISCRIMINATION ACT

(KITCHENER, ON) January 16, 2019 – The Canadian Coalition for Genetic Fairness (CCGF) was disappointed with the Quebec Court of Appeal view that the Genetic Non-Discrimination Act (GNA) does not constitute a valid exercise of Parliament’s criminal law power. On May 4, 2017, the GNA became law making it a criminal offence for a service provider or anyone entering into a contract with a person to require that person to take or disclose the results of a genetic test or collect use or disclose a person’s genetic test results without written consent.

“People living in Canada should be able to benefit from genetic testing to inform health and life decisions rather than live in fear that their DNA will be used against them by employers, insurers, schools and more,” says Bev Heim-Myers, Chair for the Canadian Coalition for Genetic Fairness. “The Quebec opinion is a step backwards at a time when we should be increasing the protection of our genetic information at federal, provincial and territorial levels.  Genetic discrimination is an important issue in Canada and a barrier to science, medicine and the health and well being of people living in Canada. The Genetic Non-Discrimination Act addresses this problem and protects the genetic test information for the benefit of all Canadians. It is important to note that the Quebec Court of Appeal just provided an advisory opinion on the specific questions referred to them, however, this opinion does put the Genetic Non-Discrimination Act at risk. The CCGF is exploring all options as we move forward with our lawyers.

This historic law, which passed 3rd reading in the House of Commons by a vote of 222 to 60 in May 2017, enabled all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enabled Canada to remain as a leader in genomic research and has already helped to alleviate the fears of Canadians, encouraging participation in genomics research and clinical trials. All Canadians deserve the right to proactively manage their own health and advance medicine without the fear of genetic discrimination. The Genetic Non-Discrimination Act alleviated that fear and removed barriers, by protecting genetic test information.

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Click here to read the HSC Fall 2018 Horizon Article

Click here to read the HSC Spring 2018 Horizon Article

Click here to read the HSC Winter 2018 Horizon Article

Click here to see the updated statement on the use of genetic information from the Privacy Commissioner