Genetic testing has never been more accessible. A genetic test can tell you about your ancestry, or tell your doctor important information about your health. The information from a genetic test, however, is highly personal. It would be a breach of your privacy if that information fell into the wrong hands.

The Supreme Court of Canada recently upheld the Genetic Non-Discrimination Act, a federal law that helps ensure your personal genetic information is protected.

What is the Genetic Non-Discrimination Act?

The Genetic Non-Discrimination Act was enacted in 2017 to help keep genetic information private and safe. The Act defines what is “genetic testing”. It also creates several criminal offences. Specifically:

• You can’t be forced to undergo a genetic test to receive goods or services;
• You can’t be forced to undergo a genetic test to enter into or continue a contract; and
• You can’t be forced to undergo a genetic test to receive specific terms or conditions in a contract.

What’s more, you can’t be forced to disclose the results of a genetic test you choose to take in order to receive goods or services or to enter into or continue a contract.

The Act also means that no one can collect, use, or disclose the results of your genetic test without your written consent.

The only exceptions in the Act are for physicians, pharmacists, or health practitioners, or people conducting scientific research (if you are a participant in a research study).

The Act also amended the Canada Labour Code to protect employees from forced genetic testing or disclosure of test results (and to make sure you cannot be disciplined because of genetic test results). It amended the Canadian Human Rights Act to add genetic characteristics as a prohibited ground of discrimination: just like race, sex, or disability, you have a right to be free from discrimination based on your genetic characteristics or your refusal to take a genetic test.

What did the Supreme Court say about the Genetic Non-Discrimination Act?

After the Act was enacted, the Government of Quebec referred the first seven sections of the Act to its Court of Appeal. The Quebec Court of Appeal found that these provisions of the Act were ultra vires, or outside the power of the federal government.

The Canadian Coalition for Genetic Fairness appealed the decision to the Supreme Court.

On July 10, 2020, the Supreme Court released Reference re Genetic Non-Discrimination Act, 2020 SCC 17. A narrow majority of the Supreme Court upheld the Act, finding that it was intra vires, or within the power of the federal government.

This was because Parliament is allowed to enact laws addressing treats of harm to autonomy, privacy, equality, and public health, as part of its power to enact criminal laws.

When the Supreme Court examined the text of the Act, its title and structure, extrinsic evidence from parliamentary debates, and the effects of the provisions, it found that the pith and substance, or main purpose, of the Act is to protect individuals’ control over their detailed personal information, to address Canadians’ fears that their genetic test results will be used against them, and to prevent discrimination based on that information.

The minority of the Court would have focused on the public healthcare system and health-related harms (instead of focusing on genetic discrimination), but still agreed that the pith and substance of the Act is federal.

Four judges of the Court wrote in dissent, and would have found that the Act was ultra vires Parliament, finding instead that the provisions are within the provincial jurisdiction over property and civil rights.

What now?

The decision was welcomed by the Canadian Human Rights Commission, which issued a statement applauding the decision as “reassuring” noting that “people in Canada do not have to live in fear of how their genetic information could one day be used against them.” However, it cautioned that protection against genetic discrimination should also be extended to provincial and territorial human rights statutes. You can read the full statement of the Commission here (link). The Office of the Privacy Commissioner of Canada also released a statement in support of enhanced protection to the important privacy interests of individuals, “[i]n a time of unprecedented demand for personal data”. You can read the full statement of the Privacy Commissioner here (link).

Bakerlaw has previously posted about the implications of genetic testing here (link). You can read Kimberly Srivastava’s Think Paper on genetic testing, discrimination, and insurance law here (link).

Has your employer asked you to take a genetic test? Have you been asked to disclose the results of a genetic test you took voluntarily? Please contact bakerlaw (link) and see how our team may be able to help you.