Supreme Court Of Canada Affirms The Genetic Non-Discrimination Act, Weighing Autonomy, Privacy, And Accessibility Of Insurance

• Published date: 22 July 2020
• Subject Matter: Insurance, Insurance Laws and Products
• Law Firm: McMillan LLP
• Author: Ms Darcy Ammerman and Kristen Shaw (Summer Student)

The Supreme Court of Canada ('SCC') recently ruled that Parliament had the power to enact the Genetic Non-Discrimination Act ('GNDA'), and in so doing, make it an offence to require genetic testing, or to share the results of genetic testing (except in limited circumstances) as a precondition to obtaining insurance, among other things.¹ Previously, a five-judge panel of the Quebec Court of Appeal had struck down the law on constitutional grounds.

More specifically, the GNDA prohibits companies, including insurers, from requiring genetic testing, or the results of genetic testing, before entering into or continuing a contract with an individual or providing services to an individual.² It also prohibits the collection, use or disclosure of genetic testing results without written, informed consent.³

The Government of Quebec had challenged the constitutionality of the GNDA based on the argument that the rules set out therein relate to contracts and the promotion of health, and therefore beyond Parliament's jurisdiction. The Attorney General of Canada agreed, as did the Court of Appeal. The SCC however, found that the rules are more properly categorized as criminal in nature since (i) they are in the proper form of prohibition and punishment, and (ii) their purpose is to prevent a public harm.

Justice Karakatsanis, in writing for the majority, held that the intention of the prohibitions within the GNDA is to combat genetic discrimination and that fear of negative treatment (including a finding by an insurer that an individual or a family member is uninsurable) may prevent Canadians from undergoing genetic testing potentially having devastating consequences on their health or the health of the public.⁴

Indeed, testimony before the Standing Committee on Justice and Human Rights revealed that more than a third of families with severely ill children approached to participate in a genetic study declined based on a fear of genetic discrimination.⁵ Besides foregoing a potential explanation or treatment for a debilitating medical condition, the reluctance of individuals to participate in genetic research may also cause to Canada to fall behind in important genome research, such as the Human Genome Project.⁶

In addition to the risk of genetic discrimination, the SCC identified that there may be psychological harm to an individual if genetic testing reveals unfavourable characteristics or predispositions that were previously unknown. In addition, sharing genetic...