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Genetic Non-Discrimination Act upheld by the Supreme Court of Canada

Reading Time 4 minute read

Life Sciences Bulletin

In a split decision (3-2-4) the Supreme Court of Canada (SCC) upheld the Genetic Non-Discrimination Act, a federal law designed to protect personal information and prevent genetic discrimination.

A majority at the SCC found that genetic privacy is part of core biographical information and as such, its protection is a valid criminal law objective.

The Context

Until the advent of advanced genomic research, little was known about why some individuals seemed cursed with debilitating diseases and conditions. However, today, we can often read in a person's genetic profile the probability of developing or passing on genetic traits.

As genetic traits were increasing shown to play an important, if not a determining role in the development of certain diseases, reports from medical experts and researchers indicated that a growing number of Canadians hesitated or refused to have their genetic profile established in the absence of protection against genetic discrimination; they feared loss of insurance, employment and social opportunities.

At the same time, the evidence of links between genetic makeup and response to medical treatment was increasingly clear. Personalized medicine, which determines necessary curative approaches according to the characteristics of each patient, has become recognized as an important key to successful treatment outcomes.

According to expert testimony in Parliament, by 2015, many Canadians felt unable to avail themselves of testing for their genetic profiles because of apprehensions of negative repercussions for themselves or their children. Various support groups for these persons, groups representing families with serious genetically-linked disorders as well as scientists and medical researchers called for the federal government to enact legislation to correct this situation.

The Sinuous Path of the Genetic Non-Discrimination Act

So, the federal government passed the Genetic Non-Discrimination Act in 2017, despite the fact that the federal Minister of Justice stated he thought it rather to be of provincial jurisdiction and that the courts would be the ultimate arbitrator of its constitutionality.

As previously discussed, the law, which is relatively short, does three things: (1) it amends the Canada Labour Code to protect employees from obligatory genetic testing; (2) it adds genetic discrimination to the prohibited grounds of the Canadian Human Rights Act; and (3) it creates new Criminal Code offences for anyone who requires a person to: (i) undergo a genetic test; or (ii) provide the  results of an already existing genetic test as a condition of receiving goods or services or of entering into a contract.

While amending the Labour Code and the Human Rights Act were not in question (both are clearly within federal jurisdiction), the sections treating genetic health-related issues as possible criminal offences were seen by many to be a possible overreach into provincial authority over property and civil rights and particularly, into contracts of insurance and employment.

Accordingly, the Government of Quebec referred the sections of the new law, which dealt with the Criminal Code provisions, to the Quebec Court of Appeal; arguing that it properly belonged to the provinces to legislate on this matter. The Court of Appeal agreed and found most of the law unconstitutional. But on July 10, 2020 the SCC reversed this decision; with a majority finding the law a valid exercise of federal power.

The Decision: Protection Against Genetic Discrimination as Part of Criminal Law

The majority (Justice Karakatsanis) upheld the law in finding that individuals have legitimate privacy, autonomy and dignity interests in their own genetic information. They held that forcing people to undergo genetic testing and to face the results is a clear threat to these values; that genetic identity is at the heart of a biographical core of information and its protection is warranted. Consequently, they concluded that the federal government is justified in using its criminal power to protect public health by removing disincentives to genetic testing.

A concurrent opinion (Justice Moldaver) reasoned that the criminal law was correctly used to protect public health; the means used is by prohibiting conduct that undermines the individual's control over their intimate information resulting from genetic testing and thus is within federal power.

However, the minority ( Justice Kasirer), who found that this initiative should be better left to the provinces as it dealt primarily with contracts and provision of goods and services, raised the question of how, in the future, as technology creates increasing challenges for the protection of privacy and autonomy, this may call into question the existing equilibrium between federal and provincial areas of responsibility.

The Impact

While debates about the division of powers has been a constant of the Canadian confederation,  the disagreement about how to qualify legislative initiatives that are a response to scientific knowledge suggests that there will be many more discussions about which level of government most properly responds to the new ethical challenges posed by technology.

As innovative technologies such as biometrics, facial and voice recognition, thermal detection, enhanced by powerful artificial intelligence become increasingly common-place in the lives of ordinary people, the choices of where and how to regulate them in Canada will need careful consideration.


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