Contributed by Alanna Crouse
Genetic testing is becoming an every-day reality for many Canadians. Between the rise of personalized medicine in clinics, to the trendiness of at-home DNA tests like 23andMe, there appears to be a growing acceptance and comfort with genetic testing. Yet despite this normalization, not everyone is ready to embrace the idea of scientists or companies having access to some of their most innate and intimate information.
This trepidation is understandable and well-founded. Each of our genomes (the collection of an individual’s genetic material) is unique and offers a wealth of information into our past, present and future. Our genomes can reveal our ancestral origins, who we are biologically related to, and predispositions to diseases that may manifest later in life. Thus, one cheek swab has the potential to uncover stories and vulnerabilities we may not know about ourselves.
The ability to uncover such information brings with it the potential for genetic discrimination. Genetic discrimination occurs when people or organizations treat others differently because they have a gene mutation that causes or increases their risk of disease. Genetic discrimination has so far impacted the ability of Canadians to gain and retain employment, and obtain insurance coverage. Fear of these life-altering ramifications has led some to decline genetic tests that would otherwise generate beneficial information including diagnoses, appropriate treatment options, and disease prevention plans. Thus, the inability to guarantee the safeguarding of genetic information has been holding Canadians back from safer and healthier lives.
Genetic Non-Discrimination Act
In recognition of the benefits of genetic testing and the harms of genetic discrimination, Bill S-201, also known as the Genetic Non-Discrimination Act (GNDA) was enacted in 2017. GNDA prevents any person from requiring an individual to undergo a genetic test, or to disclose the results of a genetic test as a condition of providing goods or services; of entering into or continuing a contract or any part of an agreement; or of offering or continuing to offer specific terms and conditions in a contract or agreement with that individual. This prohibition is a criminal offence, punishable by a maximum fine of $1 million and/or imprisonment up to 5 year if convicted on indictment, or a maximum fine of $300,000 and/or imprisonment of up to 12 months on summary conviction.
The inability to guarantee the safeguarding of genetic information has been holding Canadians back from genetic testing. || (Source: Flickr // Genome Research Limited)
GNDA also amends pre-existing legislation. Through the Act, the Canada Labour Code (CLC) was amended such that employers are prohibited from requiring genetic testing or the disclosure of genetic test results. In addition, the Canadian Human Right Act(CHRA) was amended to prohibit discrimination in the federal sector based on a person’s genetic characteristics. Through these amendments, GNDA seeks to provide Canadians broad protection from genetic discrimination.
Although this legislation may seem beneficial, its effects may be short lived. After its enactment, the government of Quebec challenged the validity of the Act claiming it encroaches into provincial jurisdiction. In making this argument, the government of Quebec referred the issue to the Quebec Court of Appeal. Interestingly, the Attorney General of Canada, who would normally represent the federal government in such a constitutional challenge, agreed with the government of Quebec that GNDA unjustifiably encroached upon provincial powers. As such, the Attorney General did not represent the federal government and instead, the court designated an amicus curiae (“friend of the court”) to represent Parliament.
When challenging a law under the Constitution’s division of powers, the court must look to the “pith and substance” of the law. In other words, the court determines the main purpose of the law. The court then determines whether the main purpose of the law falls under federal or provincial jurisdiction as set out in ss. 91 and 92 of the Constitution Act, 1867 respectively.
The government of Quebec argued GNDA falls within provincial jurisdiction because of its implications for insurance and employment, each of which are designated to the provincial governments. On the other hand, support for GNDA falling under federal jurisdiction came from the federal government’s criminal law powers. For a law to have a criminal law purpose, it must forbid some “evil”, and the prohibition must be backed by a penal sanction. In the past an “evil” has meant a dangerous object or harmful substance that poses a threat to public peace, order, security of health in Canada.
Genetic testing can generate beneficial information including diagnoses, appropriate treatment options, and disease prevention plans. || (Source: Flickr // Province of British Columbia)
The Quebec Court of Appeal determined that the pith and substance of GNDA is to “encourage the use of genetic tests in order to improve the health of Canadians by suppressing the fear of some that this information could eventually serve discriminatory purposes.” The Court stated that there is a difference between protecting the public from a dangerous object or substance, and “fostering or promoting health.” In doing so, the court found that the objective of GNDA does not constitute a criminal law object. Thus, after only a little more than a year since being enacted, GNDA was deemed unconstitutional.
What Happens Now?
Since the Court of Appeal’s judgement was rendered, the Canadian Coalition for Genetic Fairness has appealed the decision to the Supreme Court of Canada, which granted leave to appeal but has yet to release a decision on the matter. In the interim, despite being invalidated by the Court of Appeal, the effects of GNDA largely remain in place. The Canadian Life and Health Insurance Association Inc has stated that its members will continue to comply with GNDA until a Supreme Court decision is rendered. This is comforting to know, but what will happen if the Supreme Court upholds the Court of Appeals decision declaring GNDA unconstitutional?
Despite the apprehension and fear surrounding genetic discrimination, the ramifications of losing GNDA may not be as severe as one might initially think. In fact, various sources have questioned the need for GNDA in the first place. For example, in 2016 the Privacy Commissioner of Canada, Daniel Therrien, recommended against amending federal laws stating that federal laws, such as the Privacy Act and PIPEDA, already contained provisions that would apply to genetic information. From within academia, Yann Joly, Gratien Dalpé, and Miram Pinkesz of McGill’s Centre for Genomics and Policy have posited that GNDA did not supply extensive protections to begin with, stating “the Act has important loopholes and raises equity concerns that significantly weaken its capacity to prevent genetic discrimination in most cases.” Instead, they propose that a successful strategy for tackling genetic discrimination requires adopting a complementary framework of both federal and provincial policies in combination with specially adapted privacy laws.
As of now, the legislative protections for Canadians against genetic discrimination are unclear. Hopefully, however, the Supreme Court’s decision will come quickly and help steer us toward genetic equality, with or without GNDA.
Alanna Crouse is a Junior Online Editor of the McGill Journal of Law and Health. Alanna completed a Bachelor of Science at Queen’s University and subsequently earned a Master’s in Human Genetics at McGill University. Alanna’s Master’s work formed part of an international initiative, The Salmonella Syst-OMICS project, which sought to identify genetic determinants of Salmonella virulence, drive technological advances in food safety practices, and inform policies surrounding food safety. In addition to her work in science, Alanna has been involved in such initiatives as the Law Needs Feminism Because National Executive, Pro Bono Students Canada, and the Sexual Assault Center of the McGill Student’s Society. Alanna’s current interests include bioethics, health law, equality rights, and making science accessible.