Genetic Discrimination: Provincial & Territorial Laws Needed

Leah Hutt and Elaine Gibson propose that Federal legislation is insufficient to fully protect the genetic information of Canadians, so provinces and territories must enact laws and regulations within their jurisdictions that can help to ensure further protection for all Canadians from genetic discrimination.

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Last summer, many Canadians felt a sense of relief when the Supreme Court of Canada upheld the validity of the federal Genetic Non-Discrimination Act. But that relief needs to be tempered. Let us explain why.

Criminal prohibitions in the Genetic Non-Discrimination Act establish that people cannot be required to undergo genetic testing or be compelled to share existing test results. The Act also amends the Canada Labour Code to prohibit requiring genetic information  and the Canadian Human Rights Act  to prohibit discrimination based on a genetic characteristic.

Parliament passed the Act in 2017. The Quebec government promptly challenged significant portions of the legislation, arguing that Parliament did not have the power to act. Rather, Quebec said it was up to the provinces to legislate in this area. The question before the Supreme Court of Canada was whether Parliament could invoke its criminal law power to prohibit compulsory genetic testing and non-voluntary use or disclosure of genetic test results. The judgment spanned 156 pages, but the bottom-line answer is: “yes”, this is a legitimate use of the criminal law power by Parliament.

Photo Credit: GDJ and Clker-Free-Vector-Images/pixbay. Image Description: A human-shaped DNA strand covered by an umbrella with Canadian maple leaf symbol.

The amendments Parliament made to the Canadian Labour Code and Canadian Human Rights Act only apply to individuals who are employed by or receive services from the federal government, First Nations governments, and federally regulated businesses. This leaves a significant gap because matters of profound importance in relation to genetic testing are governed by provincial and not federal laws.

Each province and territory has human rights legislation that is aimed at preventing, remedying and ameliorating discriminatory conduct at the individual and systemic levels. Such legislation contains broad remedial powers to enable the realization of these aims. Similarly, provincial and territorial employment legislation aims to establish minimum standards, offer proactive steps to support compliance, and provide broad remedies. The provinces and territories should amend their respective human rights and employment legislation to explicitly address genetic discrimination. This will help to ensure that all Canadians, and not only those in the federal sphere, receive the same comprehensive protection against genetic discrimination.

In addition to these amendments to provinicial and territorial laws ensuring broad coverage for Canadians, they would also ensure access to existing administrative complaint processes, as with any other violations of labour laws or human rights codes. These processes are relatively accessible. Unlike when a criminal law power is invoked, these Acts focus on preventing discrimination and resolving grievances, often through conciliation.

The federal Genetic Non-Discrimination Act offers redress under the criminal law. These protections are important, but they do not provide an accessible path to prevent or redress harms for individuals; nor do they address harms of a systemic nature. The criminal law can be a blunt and unwieldy mechanism. It requires police to decide whether to lay a charge and a prosecutor to decide whether to carry the case on behalf of the public. The aggrieved individual has little or no say in the matter. The likelihood of an adequate response to a circumstance in which a person believes their genetic information has been used inappropriately is slim at best. Further, a criminal prosecution might punish the wrongdoer, but only after a victim of the wrongful use of genetic information has been harmed.

In addition to amendments to human rights and employment legislation, provinces and territories need to amend their insurance Acts. Concern about the impact of genetic testing on insurability was a key driver behind the Act’s prohibitions. Insurance is a matter of exclusive provincial and territorial jurisdiction so the federal government was not able to amend insurance legislation. Insurance laws require individuals applying for insurance to fully disclose material facts. If they don’t, they risk the contract being voidable. The disclosure requirement is inconsistent with the Genetic Non-Discrimination Act, which prohibits requirements to share genetic test results. Provincial and territorial insurance laws need to be amended to clarify that individuals do not risk invalidating their insurance contracts by non-disclosure of genetic test results.

Through the Genetic Non-Discrimination Act and amendments to the Canadian Human Rights Act and the Canada Labour Code, Parliament took a coordinated approach to protecting genetic information and preventing discrimination based on that information. They were only able to act within the scope of their jurisdiction. The provinces and territories need to embrace this coordinated approach by amending their various laws to ensure that all Canadians receive broad protection against genetic discrimination.

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Leah Hutt is the senior health law and policy analyst at the Dalhousie Health Law Institute. @leah_hutt

Elaine Gibson is a professor at the Dalhousie Schulich School of Law.