Policy statement on the collection, use and disclosure of genetic test results
On December 21, 2018, the Quebec Court of Appeal found sections 1 to 7 of the federal Genetic Non-Discrimination Act to be unconstitutional on the basis that they are outside of the Parliament of Canada’s jurisdiction over criminal law. The judgment of the Quebec Court of Appeal is now under appeal in the Supreme Court of Canada, which heard the matter on October 10, 2019. We will be updating this page in due course.
Updated: December 2017
On May 4, 2017 Bill S-201, the federal Genetic Non-Discrimination Act, received Royal Assent. This is an important piece of legislation that both Houses of Parliament have agreed is necessary to protect Canadians from the adverse impacts of genetic discrimination.
With the passage of the Genetic Non-Discrimination Act, Canadian law now prohibits any person from requiring an individual to undergo a genetic test as a condition of providing goods or services or entering into a contract. It also prohibits any person from requiring the disclosure of existing genetic test results as a condition of engaging in those activities. In addition, the Act provides that employees of federally regulated businesses can refuse to undergo a genetic test or to disclose the results of a genetic test.
Individuals may wish to take a genetic test for a number of purposes, including health-related purposes. If they choose to undergo a genetic test they should be able to do so without fear that their results will be used against them. As Parliament has clearly indicated, Canadians should not have to choose between potential discrimination and taking a genetic test, especially if such a test could improve their health and well-being.
In addition to the Genetic Non-Discrimination Act, Canada’s federal and provincial laws set out general rules that govern the collection, use and disclosure of personal information, including health and genetic information, by organizations engaged in commercial activity.Footnote 1 The Privacy Commissioner of Canada oversees compliance with the Personal Information Protection and Electronic Documents Act. The Information and Privacy Commissioners of British Columbia, Alberta and Quebec oversee compliance with their respective private sector privacy laws.
Generally speaking, an organization subject to federal or provincial privacy laws must ensure that its collection, use or disclosure of personal information is for purposes that a reasonable person would consider are appropriate in the circumstances. Collection, use or disclosure of personal information that contravenes the laws of Canada would not be considered appropriate by a reasonable person.
Hence, given the adoption of Bill S-201, an organization that requires individuals to undergo genetic testing or provide existing genetic test results as a condition of providing a product or service or as a condition of employment in a federally regulated business would generally be in contravention of applicable privacy laws as well as the Genetic Non-Discrimination Act.
Although organizations can no longer require individuals to give consent in these contexts, individuals may nonetheless choose to do so voluntarily. Even then, however, collection is limited to that which is necessary for the purposes, and those purposes must be considered by a reasonable person to be appropriate in the circumstances.Footnote 2 In such cases, voluntary consent must be given in writing according to the Genetic Non-Discrimination Act. Similarly, given the sensitive nature of genetic information, privacy laws generally require such consent to be express.
The Quebec Minister of Justice, having reservations regarding the jurisdiction of the Federal Government to adopt this law, referred the question of its constitutionality to the Quebec Court of Appeal on June 19, 2017.Footnote 3
At the time of writing, the Federal Minister of Justice has announced her intention to refer the constitutionality of certain aspects of the Genetic Non-Discrimination Act to the Supreme Court of Canada. Until the Courts rule on this issue, the Genetic Non-Discrimination Act remains in effect. The Office of the Privacy Commissioner of Canada, the Office of the Information and Privacy Commissioners for British Columbia, Alberta and Quebec will continue to ensure compliance with applicable privacy legislation and protect Canadians’ privacy rights in a manner consistent with the laws in effect.
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