Genetic Non-Discrimination Act Reference: What’s the difference between a genetic test and a biopsy?

At the hearing of the Genetic Non-Discrimination Act Reference, SC 2017, c 3 [GNDA Reference], at the Supreme Court of Canada (“SCC”) this month, Justice Brown asked the representative of the Attorney General of Canada whether genetic test results on the one hand and medical information like biopsies and family history on the other were legally distinct. With the Genetic Non-Discrimination Act [GNDA], Parliament had prohibited – with criminal sanctions – anyone to compel any person from taking a genetic test or disclosing the result of a test already taken (GNDA, sections 3-5). In enacting the legislation, Parliament proceeded on evidence that showed that people – some with family histories of genetic illness – were avoiding taking genetic tests for fear that their results could be used against them in unpredictable ways in the future. The GNDA sought to remove these fears, but it left other medical information like family history and other medical tests unaffected. So, as Justice Brown asked, was there something special about genetic testing, such that it might explain why Parliament chose to use its criminal law power to enact the GNDA?

This case comment argues that the GNDA is about prohibiting the real – and morally unseemly – individual and societal harm that comes from the dilemma that some Canadians face when considering whether or not to take a genetic test. The question of determining whether the GNDA is constitutional hinges on whether it attacks an “evil or injurious or undesirable effect upon the public” as required by the jurisprudence on the criminal law power. This case comment argues that Parliament saw evidence of an evil or apprehended harm to fundamental personal interests – as reflected in the legislative history – and chose to act. It considers the legislative context of the GNDA, which establishes the existence of an evil or apprehended harm behind Parliament’s decision to enact the GNDA, and argues that, in the absence of compelling reasons to do otherwise, Supreme Court justices should show deference to Parliament regarding its finding of harm.

Parliament enacted the GNDA as a response to a real “harm”

In 2017, Parliament enacted the GNDA pursuant to its criminal law power as a response to expert evidence that showed that some Canadians avoided taking genetic tests despite knowing about their potential health benefits. The evidence showed that Canadians were concerned that taking a genetic test could lead to unpredictable consequences in the future, such as being forced to disclose results as a precondition to an insurance or employment contract. The Hansard record of the GNDA showed medical doctors and researchers testifying that Canadians with family histories of genetic illness were particularly concerned. One doctor testified that she advised patients “every day” regarding their decisions about whether or not to undergo testing, helping them to understand both the diagnostic benefits of testing as well as potential future harms. Some of these patients’ decisions concerned children and other relatives whose genetic informational security could also be affected by any individual decision to undergo testing. Other testimony suggested that individual avoidance of genetic testing contributed to higher overall costs for Canada’s healthcare system.

Parliament interpreted these concerns as a real public health harm in the sense understood by the criminal law, and enacted the GNDA to address them. By prohibiting anyone from compelling genetic tests or disclosing the results of tests already taken, the GNDA sought to enable Canadians to take advantage of better diagnostics and treatment, with consequent life- and cost-savings benefits to individual and public health. The GNDA made it impossible, for example, for an insurance company to require clients to take genetic tests or to disclose results. In fact – and this became a central issue in this case – despite being drafted to apply to “any person”, in the short-term the GNDA may impact most heavily on insurance companies because it prohibits them from requiring disclosure of test results, even if those tests reveal a material risk of future illness or disease.

In an unusual – and unprecedented – turn of events, after Parliament enacted the GNDA in 2017, the then-Justice Minister Jody Wilson-Raybould took the position that the Act was not a valid exercise of Parliament’s powers. This put counsel for the Attorney General of Canada who appeared before the SCC at the GNDA Reference hearing in an awkward position: he was there to argue against the constitutionality of a law that the Parliament of Canada itself had voted in favour of and enacted. He argued – along with the Attorneys General of Quebec, Saskatchewan and BC, as well as the Canadian Life and Health Insurance Association – that the GNDA was not a valid use of the criminal law power because it is aimed at regulating insurance companies, which fall under provincial jurisdiction in property and civil rights under s.92(13) of the Constitution Act, 1867. He argued that the GNDA did not address a “public harm or evil” as required by the s.91(27) case law, and that a finding to the contrary would upset the constitutional division of powers by bringing provincial powers within the scope of the federal criminal law.

The main issue in the GNDA Reference was therefore whether the GNDA concerned a “public harm or evil”, as understood by the jurisprudence on the criminal law power. The GNDA does not, it helps to recall, seek to prohibit other commercial compulsion in relation to other medical information, such as biopsies and family history; regulation of the commercial use of this type of information may properly be understood as falling within provincial authority under property and civil rights. As a result, it became crucial for those defending the GNDA to answer Justice Brown in the affirmative, and to establish that genetic information was unlike other medical information to the point where it could legitimately be regulated by the criminal law.

The evidentiary record establishes the existence of a real “harm”

The responding Attorney General of Canada accepted in its factum that “[c]oncerns about the impact of genetic testing on access to insurance are real” (AG Canada factum, para 4), and argued that Parliament may legitimately “criminalize contractual relations where [Parliament’s] dominant purpose in doing so is to prevent infringements of human dignity or core privacy interests” (AG Canada factum, para 2). However, the Attorney General of Canada argued that the GNDA, at its core, does neither:

“Parliament criminalized the provincial requirement to disclose material health information to try to ensure that people had access to the health benefits of genetic medicine. This is a laudable policy objective, but it is not a criminal law objective. The dominant purpose of the Genetic Non-Discrimination Act is to regulate contracts of insurance in a manner that promotes and protects the health of consumers of insurance” (para 5).

It is notable that the respondent’s factum characterizes the people at the heart of the GNDA legislation as “consumers of insurance” rather than people who are concerned about taking a genetic test. The factum also highlights that “[e]very province in Canada regulates insurance on the basis of equality of information”; “[i]f a genetic test reveals material health information, provincial regulation requires that it be disclosed on pain of nullity of the contract” (para 4).

Joe Arvay, appearing for the Canadian Coalition for Genetic Fairness (the appellant) in the GNDA Reference, argued at the SCC that it is impossible to separate privacy and health for the purposes of establishing the true purpose of the GNDA and that “criminaliz[ing] contractual relations where [Parliament’s] dominant purpose in doing so is to prevent infringements of human dignity or core privacy interests” is exactly what the GNDA does. He argued that a presumption of parliamentary legitimacy and constitutionality was at play, and that Parliament’s decision to act should be respected, and that the central issue in the case was whether Parliament had a reasonable apprehension of harm. Based on the evidence presented (and outlined above), Mr. Arvay argued that it did.

As discussed in a previous post about the GNDA Reference from January 2019, a study of the GNDA’s legislative history as a whole reveals that Parliament’s main intention was to promote health, rather than to regulate the insurance industry. The Act’s prohibitions are directed to “any person” rather than at insurance companies. The GNDA also does not significantly hinder the ability of the provinces to regulate insurance services or employment law, because the double aspect doctrine permits Parliament and provincial legislatures to pass laws dealing with genetic discrimination within their respective jurisdictional field for different purposes. Furthermore, and also as discussed in the previous post, the criminal law often has spillover effects into property and civil rights, which have nonetheless been upheld as valid criminal law.

A finding of true “harm” in the GNDA Reference requires deference to Parliament

The GNDA Reference hinges on a finding of whether the GNDA responds to a real “harm” in the sense of the criminal law. Supporters of the law argue that, based on the evidence presented to Parliament, such a harm exists. Opponents, on the other hand, suggest the evidence is anecdotal and insufficient. It may be that the decision regarding the validity of the GNDA comes down to a judgment call regarding what constitutes a real “harm.” This provokes the question: who is better able to decide what amounts to such a harm: the courts or Parliaments? What reasons support the idea that courts rather than Parliaments are more rational and better able to define “real harm”?

In enacting the GNDA, Parliament responded to evidence and chose to act. In the absence of evidence that shows that Parliament was using the language of “harm” to disguise – or “colour” – legislation in criminal law terms in order to bring it under federal jurisdiction, the SCC should uphold the GNDA based on the presumption of parliamentary legitimacy. To show colourability, there must be evidence to show that Parliament’s purpose in enacting a law was not as stated, that there was a hidden agenda. There is no such evidence in this case. The Court heard no evidence that Parliament acted based on anything other than concerns that Canadians were avoiding taking potentially life-saving measures, measures that also had implications for the overall functioning of the healthcare system. In the absence of compelling reasons to do otherwise, the SCC should therefore defer to Parliament’s finding of “apprehended harm.” Furthermore, while all provinces received notices of the GNDA Reference, only three provinces out of ten chose to submit arguments that the Act is beyond the scope of Parliament’s criminal law power.

Conclusion

It should be remembered that the interests of vulnerable people are at stake in this case. It should also be remembered that the will of Parliament was not represented in court at the GNDA Reference hearing. A knee-jerk reaction in cases where a federal law is challenged on division of powers grounds is that, because of the federal paramountcy doctrine, provincial jurisdiction is at risk of being subsumed by the criminal law. But federal paramountcy only applies in the case of a conflict and, as long as people who are vulnerable to genetic illness and the consequences of the release of their genetic information are protected, provinces are free to legislate at will. It is true that the criminal law must be kept in check by the requirement of a valid criminal law purpose; but protecting vulnerable consumers or employees from compulsion that threatens their privacy, dignity, autonomy and equality ought to qualify. The opinions in the GNDA Reference, regardless of the outcome, may break new ground in recognizing the protection of privacy and the prohibition of discrimination as valid criminal law purposes. 

During Mr. Arvay’s testimony, Justice Moldaver agreed that the “huge privacy, dignity, and autonomy” concerns involved in the GNDA Reference could not be easily separated one from the other. Furthermore, he suggested, they could all together “come well within Parliament’s competence to legislate under the criminal law.”

“Justice Moldaver, I am not used to you making my life so easy,” Mr. Arvay said.

“Don’t get used to it.” 

Based on the questions that the justices asked during the GNDA Reference hearing, it is likely that the court will split and a narrow majority could go either way. If the appellants in this case lose, however, it is likely that it will only extend their journey to a successful law that protects genetic information security. In the 21st century, it is difficult to imagine that Canada would remain the only G7 country without a law that specifically provides such protection.