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International Bar Association – 27 October 2020

‘Taking a genetic test that could save your life should not come at the price of you not being hired or promoted, or not being able to adopt a child or to travel, not being able to get insurance or access childcare’, says Marcella Daye of the Canadian Human Rights Commission.

Canada’s highest court recently upheld a Canadian federal law which prohibits discrimination based on genetic grounds. The implications of this decision are potentially quite broad, both for workplace rights and for the approach to discrimination more generally.

We are living in an age where the private citizen is no longer so private. Both public and private organizations are collecting data from citizens both overtly and surreptitiously. Most of this data collection is said to be for business purposes, such as managing employment relationships, targeting individuals with ads, or catering a service based on previous recorded choices. However, some of the data collected is highly personal and goes beyond the record of what was purchased on an online shopping spree. As technology and science continue to innovate, the disclosure of personal data, such as genetic information, has increased dramatically.

In 2003, the first human genome was decoded. Genetic science and the related applications of this learning and technology have surged since then. Now, in 2020, individuals willingly provide their genetic data to organizations (medical or otherwise) for a wide range of purposes, including helping to diagnose and treat complicated illnesses or to learn about potential health threats to which their genetic composition is more susceptible. Other organizations, such as 23andMe or AncestryDNA are using individuals’ saliva to create genetic profiles which provide a comprehensive ancestry breakdown and trait reports. All of this has resulted in a dramatic increase in the number of individuals whose genetic information is collected and available.

Although this rush to develop and adopt scientific tools appears initially to be an unmitigated positive development, genetic testing opens the door to potential repercussions, especially regarding employment or insurance opportunities. Ultimately, the Canadian government acknowledged that legislation was needed to protect the individual’s autonomy over their genetic information and passed the Genetic Non-Discrimination Act (‘Genetic NDA’) in 2017. Since that time, this approach has faced criticism on constitutional and other grounds, as described below.

Overall, the Genetic NDA aims to protect the autonomy and privacy of Canadian individuals over their genetic information. It does so by altering three longstanding pieces of legislation in Canada – the Canada Labour Codethe Canadian Human Rights Act, and the Criminal Code. Generally, the Genetic NDA amends the Canada Labour Code to protect employees from obligatory genetic testing. It also adds genetic discrimination to the prohibited grounds of the Canadian Human Rights Act. Lastly, it creates a new Criminal Code offence for anyone who requires a person to undergo a genetic test or provide the results of an existing test as a condition of receiving goods or services or entering into a contract. Penalties under the Genetic NDA can be up to CAD1,000,000 in fines and five years imprisonment. The law is then subject to certain limited exceptions, such as medical, pharmaceutical and scientific purposes, which would not apply to most employers.

Legislative challenges arose soon after the Genetic NDA came into force. The Government of Quebec argued that the legislation fell outside of federal jurisdiction as it seeks to regulate information that may be used by insurance companies and employers, both of which are arguably within provincial jurisdiction under the Canadian Constitution. The Quebec Court of Appeal agreed with the province of Quebec, finding that the substance of the legislation fell outside of the federal jurisdiction to make criminal law. As a result, the Genetic NDA was held by the Quebec Appellate Court to be unconstitutional. The Canadian Coalition for Genetic Fairness appealed the decision to the Supreme Court of Canada (the SCC).

In ‘Reference re Genetic Non-Discrimination Act’[1] in July 2020, a 5–4 majority of the SCC held that the Genetic NDA was constitutional and was a valid exercise of federal jurisdiction. The SCC’s decision centred around a discussion as to whether the legislation was enacted for a valid criminal law purpose. The decision ultimately provides an acknowledgment of the paramountcy of individual’s right to autonomy and privacy over their genetic information. Further, the reasons given by Justice Karakatsanis profess that genetic identity is at the heart of a biographical core of information and its protection is therefore warranted. The majority reasons of the SCC point out that the text of the legislation provides strong evidence that its main purpose is combatting genetic discrimination based on test results and that the more precise mischief they are intended to address is the lack of legal protection for the results of genetic testing. The minority felt that this legislation was more aptly left to the jurisdiction of the provinces who have authority to legislate contracts and provision of goods and services. The minority also raised the consideration that as technology continues to develop and similar legal issues are raised, the balance between federal and provincial jurisdiction may be called into question. While the majority’s reasons reflect a ‘narrow win’, the outcome confirms that genetic information will now be considered worthy of express protection under Canadian law, both by way of the criminal law and workplace discrimination provisions.

Through the life cycle of the Genetic NDApoliticians, medical experts, technology experts, and legal experts were all called on to consider the impacts that genetic information can have on the individual. The positive effects of genetic testing are primarily centred around the overall health of the individual and, in turn, overall improvement of public health. Genetic testing allows medical professionals to better understand illness and disease and can even provide treatment for a condition that may develop in the future. Genetic testing can eliminate much of the trial and error process that medical professionals must carry out. However, a main point of discussion for the SCC involved the possible negative effects of genetic discrimination and related public fears about genetic discrimination. Experts in Canada’s parliament had explained that fear of genetic discrimination has led many Canadians to forego testing (for themselves or for their children) that could have been integral to ensuring good health. The factors that these individuals feared included loss of insurance, employment and social opportunities. This discussion provides a key backdrop for future law makers who face similar technological and moral dilemmas. The SCC’s decision may also, perhaps perversely, provide greater encouragement for individuals to proceed with genetic testing: fears of discrimination will presumably be reduced now there are assurances that Canadian law will protect the information obtained from such tests.

Many aspects of Canadian life may be affected by this decision including (but not limited to) employment, insurance, adoption, housing, consumer genetic testing and government services. Further, the result of this decision will have an effect on technology and science for decades to come. As new technologies such as biometrics, face recognition, or thermal detection continue to touch the lives of private individuals, Canada and other countries around the world will have to make decisions about how to regulate these innovations. The law will ultimately be catching up to new technology and will likely have to contend with difficult decisions about the approach to new developments. Ultimately, this decision shows Canadians that the government still holds paramount the autonomy and privacy of the individual and their personal genetic information.

[1]2020, SCC 17 (CanLII)