The Supreme Court of Canada (SCC) has ruled that individuals’ employment benefits and other insurance coverage cannot legally be affected by one’s genetic test results.
With the purported predictive power and corresponding value of genomic research only increasing, so has the public’s fear that employers and insurers will demand and use their genetic information in determining their eligibility for various insurance programs.
For example, many are hesitant to purchase consumer genetic testing to determine their ancestry for fear that the resulting information may also reveal a genetic predisposition to certain health conditions which a life insurer may access and use to deny coverage or demand a higher premium.
However, by upholding the constitutionality of certain provisions in the federal Genetic Non-Discrimination Act (the Act), the SCC has confirmed that employers and insurers, among others, can face criminal sanctions if they attempt to do so or otherwise discriminate against someone who declines to obtain or provide such information.
Decision
As its title suggests, the Act protects personal health information in order to prevent genetic discrimination. Specifically, ss. 1 to 7 criminalize compulsory genetic testing, disclosure of genetic test results, and the non‑voluntary collection, use or disclosure of genetic test results in the context of obtaining goods and services or entering into contracts.
In a split decision (5 to 4, with separate majority concurring reasons), a majority of the SCC ruled that Parliament has the power to enact ss. 1 to 7 of the Act pursuant to its broad jurisdiction over criminal law.
According to the majority, the Act’s protection of individuals’ genetic information is, in essence, a reasonable response to the growing threat of genetic discrimination as a harm to several public interests, namely individual autonomy, privacy and equality, as well as public health, all of which have traditionally been protected by criminal law.
Consequently, with the impugned provisions consisting of prohibitions accompanied by penalties indeed backed by a criminal law purpose, the Act is a constitutional exercise of the federal government’s criminal law power.
Takeaway
The decision makes it clear that insurers and federally regulated employers cannot demand or use genetic testing or information as a condition of employment or insurance coverage, and they cannot discriminate against an individual who declines to undergo such testing or provide such information. Consequently, consumer ancestry tests may now be more attractive with the fear of the results possibly being used by employers and insurers eliminated. More importantly, the SCC’s decision clears the way for patients to consent to, participate in and ultimately benefit from personalized medicine, again without the fear of any related information possibly being used by employers and insurers.
