Can my genetic information be used against me?

These possibilities have led to a boom in interest in the global consumer genomics market, with millions of Canadians eagerly wanting to have their DNA tested. One question, however, remains: at what cost?

Canadians have become increasingly worried that the information disclosed by DNA tests can be used against them. Whether it is restricting their ability to receive life insurance or making it more diffcult for them to obtain employment, concerns about this type of discrimination are on the rise. Luckily, a recent decision by our country’s highest court has upheld privacy protections for Canadians in recent federal legislation. Not so lucky are the employers and companies who will quickly need to adapt in order to avoid potential violations.

The Decision

In a 5–4 decision, the Supreme Court of Canada (SCC) ruled that Parliament’s passing of the Genetic Non-Discrimination Act (the Act) is a valid exercise of its federal criminal law powers under s.91(27) of the Constitution Act, 1867.[1] The legislation in question was enacted in 2017, establishing prohibitions with respect to health-related genetic testing. The Act states, among other things, that it is a criminal offence for individuals or corporations to:

1. Force persons to take genetic tests or disclose genetic test results as a condition of obtaining access to goods, services, and contracts;
2. Refuse persons access to goods, services, and contracts because they have declined to take a genetic test or have declined to disclose the results of a genetic test; and
3. Use a person’s genetic test results without their written consent in areas of contracting and the provision of goods and services.

It should be noted that there are exceptions to these rules for certain medical and research purposes.

The breaking of any of the rules in the Act can lead to a fine of up to CAD 1 million, jail time of up to five years, or both. Amendments were also made to the Canadian Human Rights Act and the Canadian Labour Code to account for these legislative changes.

After the Act was passed, the Government of Québec referred it to the Québec Court of Appeal (QCA) on a constitutional question, arguing that the rules in sections 1 to 7 of the Act were outside the ambit of Parliament’s authority. The Attorney General of Québec contended that these rules concern the regulation of information that is available to employers and insurers, which falls under provincial powers related to property and civil rights (s.92(13) of the Constitution Act, 1867). Interestingly, the position of the Attorney General of Canada was the same. The QCA agreed, holding that the rules in the Act did not further a valid criminal law purpose and were thus unconstitutional. The ruling was appealed.

In overturning the QCA’s decision, Justice Karakatsanis, writing for the majority, held that a law is a valid exercise of criminal power if it:

1. Consists of a prohibition;
2. Is accompanied by a penalty; and
3. Is backed by a criminal law purpose.

As it was clear that the Act contained prohibitions accompanied by penalties, the only issue to be discussed was that of the criminal law purpose.

Justice Karakatsanis held that the essence of the prohibitions was to safeguard the public from potential harms to their autonomy, privacy, equality, and health – core interests that are traditionally protected by criminal law.

1. Autonomy and Privacy: The law is concerned with allowing individuals to have control over the accessibility of their genetic test results, as these contain highly personal information that are vulnerable to abuse.
2. Equality: The law protects individuals from genetic discrimination, which threatens equality by imposing unequal treatment on individuals based on inherited and unchangeable characteristics.
3. Health: The law responds to the health-related harms that may ensue if people do not access maximally beneficial health care due to fear of genetic discrimination. This ultimately encourages individuals to be more open to undergoing genetic testing, which can provide insight into their medical situation.

Justice Moldaver, in his concurring opinion, said that while he was in agreement with the result of the decision, he thought that the essence of the Act was to protect public health by mitigating individuals’ fears that their genetic information could be used against them. The dissent, delivered by Justice Kasirer, argued that a substantive criminal law purpose must address an “evil” effect on the public, which the majority had not established. He suggested that the dominant purpose of the provisions was to regulate the exchange of information as it pertains to contracts and the provisions of goods and services, which would primarily impact the insurance and employment industry. He argued that the Act was passed with the view of promoting the health of Canadians as a whole. Justice Karakatsanis conceded in her reasons that insurers would be affected by the law and would potentially have to raise their overall premiums as they could no longer use genetic testing results where available (unless with consent), but that the prohibitions touched on all sectors, with insurance only being one of them. She gave the example of adopting a child or seeking housing.

Ultimately, Justice Karakatsanis argued, the Act responds to the lack of legal protection for individuals against genetic discrimination in a growing array of circumstances.

Future Implications

Although the decision provides some relief for those individuals worried about their genetic data being used against them, it leaves room for concern about what other legislation Parliament may enact and justify on the basis of privacy protection. The question of how far it may go, and how deep federal legislation may reach into what is traditionally the provinces’ jurisdiction, is one that we will likely see litigated again. The broad approach taken by the SCC in determining what constitutionally falls within the scope of Parliament’s criminal powers has set a precedent for what the federal government may choose to regulate in the future.

The author would like to thank Saghi Khalili, summer student-at-law, for her assistance with this article.