Supreme Court decision lifts the cloud on genetic testing

Last week the Supreme Court of Canada confirmed Canadians' rights to undergo genetic testing without fear they may be forced to disclose the results to others and suffer discriminatory treatment based on a genetic condition they might find.

On July 10, the Court upheld the constitutionality of the Genetic Non-Discrimination Act. This law prohibits the practice of requiring individuals to undergo genetic testing or to disclose existing test results as a condition of purchasing goods or services or entering into a contract. Essentially a “hat trick” for privacy, human rights and public health.

The law provides greater comfort for Canadians who want to undergo genetic testing to identify important health risks and take the necessary medical or lifestyle measures in hand to help mitigate or prepare for them.

Or, for those who wish to volunteer to participate in health research and make a selfless contribution to the advancement of science to improve the health of others.

Now, Canadians can do either, secure in the knowledge that they will not have to disclose their test results to their employer, insurance company, landlord or anyone else, frankly, from whom they purchase a good or service — if they don’t want to, that is.  Fundamentally, it’s their choice.

Though the law was adopted in 2017, it has been mired in a constitutional challenge ever since. For the last several years, while this matter was before the courts, a cloud had formed over healthcare providers who might have hesitated to offer genetic testing for their patients out of concern over how that information might be used. And for health researchers who were unable to recruit enough volunteers to participate in their studies out of worry that results could be used to deny them or their families important opportunities. That cloud has now been lifted.

As a lawyer who for many years participated in the public policy debates around genetic privacy, human rights, and public health, I find the Supreme Court’s 5-4 decision makes for a fascinating read, as most constitutional law cases tend to do.

However, as Ontario’s newly-minted Information and Privacy Commissioner, I'm even more dazzled by its upshot – enhanced privacy rights, protection against discrimination, and ultimately, improved health for Ontarians, and all Canadians.

Patricia