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Genetic Non-Discrimination Act

Chances are you or someone you know has used or heard of genetic testing technologies. These technologies have increased in popularity as a result of people attempting to learn about their ancestries. While services that use genetic testing technologies are quick, easy and serve as a great gift for some, have you ever wondered what legal protections your genetic materials have? In Canada, protections exist but they may not be around for much longer.   

In 2017, Canada joined all other G7 countries when the Federal government passed the Genetic Non-Discrimination Act. During a time where medical testing technologies were rapidly expanding and unravelling beneficial insights into human genetics, the Genetic Non-Discrimination Act was enacted to prevent the dubious and discriminatory use of genetic testing technologies. More specifically, the Genetic Non-Discrimination Act prohibits an entity from discriminating against an individual because of an individual’s genetic materials and prohibits the disclosure of genetic test results without an individual’s written consent. In fact, the Genetic Non-Discrimination Act goes as far as to criminally prohibit such conduct.   

The practical application of the Genetic Non-Discrimination Act for Canadians means that being excluded from employment as a result of genetic testing results, as was the case in both Quebec v Montréal (City) and Quebec v Boisbriand (City), or being denied insurance because one refuses to take a genetic test is no longer permissible. Further, the Genetic Non-Discrimination Act provides peace of mind for those that enjoy learning about their ancestry through the use of genetic testing technologies, by ensuring genetic materials remain protected and private. However, the protections provided by the Genetic Non-Discrimination Act may not be around much longer.  

Recently, the constitutional validity of the Genetic Non-Discrimination Act has been brought into question and has made its way up to the highest court in Canada, the Supreme Court of Canada. In December 2018, the Quebec Court of Appeal ruled that the Genetic Non-Discrimination Act was not constitutionally valid because it was ultra vires, meaning outside of the jurisdictional authority of the Federal government. Following this decision, leave for appeal was granted to the Supreme Court of Canada which has left the fate of the Genetic Non-Discrimination Act to be determined. The appeal is due to be heard in Fall 2019 and a decision followed closely thereafter.  

For the time being, the status quo prevails, while we await the decision by the Supreme Court of Canada. However, no matter how the Supreme Court of Canada rules this Fall, one thing is for certain, the decision is sure to impact the lives of Canadians in many ways.

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Lucas Barbosa, law student