On July 10, 2020, the Supreme Court of Canada issued its decision in Reference re Genetic Non-Discrimination, 2020 SCC 17, finding that it is within Parliament’s power to protect the public’s control over the use of their genetic information. This decision is an important victory for privacy rights and health justice, and affirms the validity of federal legislation aiming to protect these interests.
The appellant, the Coalition for Genetic Fairness, successfully defended the Genetic Non-Discrimination Act against the opposition of the Attorneys General of Canada and Quebec as respondents, and the Attorneys General of British Columbia and Saskatchewan as interveners. The Coalition’s position was supported by the Canadian Human Rights Commission, the College of Medical Geneticists, and the Privacy Commissioner of Canada as interveners.
The appeal arose from the Quebec Court of Appeal’s unanimous 2018 decision that the Act exceeded Parliament’s criminal law power. The Court found that the legislation did not aim to suppress a “real public health evil,” such as the use of tobacco or illegal drugs, and therefore did not serve a valid criminal law purpose. The Coalition, who acted as an intervener in the Quebec decision, appealed this ruling to the Supreme Court of Canada.
The Supreme Court of Canada rejected the Quebec Court of Appeal’s conclusion, finding instead that “the prohibitions have the purpose of combatting genetic discrimination based on test results, and that the more precise mischief they are intended to address is the lack of legal protection for the results of genetic testing. The Act does what its title says it does: it prevents genetic discrimination by directly targeting that mischief.” Justice Karakatsanis went on to highlight the Act’s most important effect: upholding individual control over who has access to your genetic information.
Choices about genetic testing are deeply personal in nature and the reasons for making them vary widely from one individual to another. Just as one individual may wish to be aware of every possible predisposition or risk that a genetic test might reveal, another may prefer not to know. And the individual who wants to know may not want others to know. The Act protects those choices.
This decision has significant implications in affirming an expansive view of Parliament’s criminal law power that accommodates forward-looking legislation designed to protect the public from novel sources of harm..
Read the full judgement here.
Joseph J. Arvay, OC, OBC, QC successfully represented the appellant together with Bruce B. Ryder, Michael Sobkin, and William Colish.