In May 2017, Parliament enacted the Genetic Non-Discrimination Act to encourage the use of genetic testing to promote the health of Canadians. This legislation prohibits requiring a genetic test or disclosure of previous results to obtain goods and services and enter into contracts.
In July 2017, the Quebec government asked the Quebec Court of Appeal if the legislation fell within Parliament’s criminal law power, arguing the regulation of contracts is not valid criminal law. In December 2018, the Quebec Court of Appeal, in a unanimous five-member decision, found most of the Genetic Non-Discrimination Act to be outside of Parliament’s criminal law power. An intervener, the Canadian Coalition for Genetic Fairness, appealed the decision to the Supreme Court of Canada. The decision was not appealed by the Attorney General of Canada, because for the first time in Canadian history the Attorney General of Canada joined with the provinces in arguing against its own legislation.
On July 10, 2020, a majority of the Supreme Court of Canada upheld the Genetic Non-Discrimination Act as valid criminal law to protect the health of Canadians, with the judgement containing two concurring reasons. Three Justices found that the purpose of the act was to protect the health of Canadians by “combatting genetic discrimination and the fear of genetic discrimination based on the results of genetic tests by prohibiting conduct that makes individuals vulnerable to genetic discrimination in the areas of contracting and the provision of goods and services.” In a concurring decision, two Justices found the act was a valid use of criminal law to protect Canadian’s health by ensuring they had control over their intimate genetic information revealed by genetic testing.
This decision adds to the understanding of what harm is protected by the criminal law. Lead counsel for the appellant, Josepha Arvary of Arvay Finlay LLP in Vancouver stated that the Genetic Non-Discrimination Act ruling “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.”
Human Rights Legislation
Also included in the Genetic Non-Discrimination Act are amendments to the Canadian Human Rights Act and the Canadian Labour Code preventing genetic discrimination based on genetic characteristics. Neither amendments were in question at the Supreme Court of Canada or at the Quebec Court of Appeal. These amendments apply to federal departments, agencies, Crown corporations, federally regulated businesses, and First Nations governments. There is currently no explicit protection of genetic information in Provincial or Territorial legislation, leaving a gap in the protection from genetic discrimination.
Professor Elaine Gibson at the Dalhousie Health Law Institute advocates for an amendment to provincial and territorial legislation to also protect genetic information.
“Each province and territory has human rights legislation that is aimed at preventing, remedying and ameliorating discriminatory conduct at the individual and systemic levels. This legislation contains broad remedial powers to enable the realization of those aims. The provinces and territories should amend their human rights legislation to ensure that all Canadians and not only those in the federal sphere receive the same comprehensive protection against genetic discrimination.”
Professor Gibson notes that human rights legislation would add to genetic information protection because involves individuals in the grievance, is a flexible and accessible complaint process, has options to use conciliation, and its focus is on preventing discrimination. This is a proactive approach that would complement the federal protections by the criminal law power in the Genetic Non-Discrimination Act that punishes wrongdoers after an individual has been harmed.
With or without amendment to provincial and territorial human rights legislation, the Genetic Non-Discrimination Act criminal prohibitions regarding use of genetic information is an interesting example of the law’s ability to protect and address a novel and future harm, and Canadian courts keeping pace with technological advances.