Genetic Privacy Legislation in Canada - Intervention and Protection

Ira Chandershekar
Mar 15, 2022
3 min read

Updated: Jan 27, 2023

Canadians—now, more than ever—are concerned about protecting genetic privacy. In fact, the Supreme Court of Canada (SCC) set precedent regarding a proceeding that claimed it is ultra vires for criminal law to prohibit genetic discrimination (1). Genetic discrimination refers to the act of illegally gathering or sharing an individual’s private genetic information with employers or insurance companies; oftentimes, the illegal obtainment of such information subjects an individual to unfair differential treatment. As per the Canadian Charter of Rights and Freedoms, all Canadians are guaranteed the right to privacy, but the private sector continues to abuse the lack of precise legal regulations protecting genetic privacy. Fundamentally, the facets of genetic privacy are twofold: protection from the illegal invasion of others and protection of one’s own private self (2).

A major use of private genetic material occurs through the process of workplace testing. As a means to identify “defective” employees, private corporations demand tests from employees regarding their genetic history (2). Alternatively, genetic information is used to monitor the health of employees exposed to hazardous chemicals or work environments. Nearly 330 firms from the Fortune 500 companies have admitted to requiring employees to submit health-based questionnaires for vocational purposes (2).

For instance, the Burlington Northern Santa Fe Railroad Company (BNSF), a multi-billion dollar North American transportation company, was charged with a class-action lawsuit for developing a secret genetic testing policy (3). It was discovered that BNSF employees developed carpal tunnel syndrome (CTS) due to a hazardous work environment.

To protect themselves from legal liabilities and prove that CTS was genetically-inherited, the company threatened to fire employees who refused to get blood tests; although BNSF informed employees about receiving a blood test, BNSF secretly deceived individuals into simultaneously conducting a genetic test (3). By infringing on individual privacy and illegally gathering genetic information, the company was forced to enter a settlement of $2.2 million dollars for the 36 employees who filed the claim (3). This case epitomizes the nature of genetic discrimination, this is because the employers illegally obtained private genetic information and subjected employees to differential treatment; with threats to dismiss employees on the basis of illicit information, the company exemplified a coercive business practice.

Within Canada, the Genetic Non-Discrimination Act (GNDA) was challenged by the Quebec Court of Appeals in a hearing at the SCC. Nonetheless, the SCC ruled that genetic discrimination “threatens the fundamental social value of equality by stigmatizing and imposing adverse treatments of individuals because of their inherited, immutable genetic characteristics” (4). The celebrated ruling underscored that it is intra vires for criminal law powers to forbid genetic discrimination. More particularly, the SCC argued that acts of genetic discrimination challenge individual autonomy, privacy, and equality (4).

Canada’s GNDA policy seeks to incriminate employers or insurance companies that engage in genetic discriminatory practices; however, the Quebec Court of Appeals believes it is ultra vires for criminal powers to govern genetic privacy. Before reaching the House of Commons, the controversial bill was presented to the Senate on three separate occasions (2). As incidents of genetic privacy violations steadily rise, the need for protection and penalization against such unconstitutional invasions of privacy have increased. The Act further lists genetic conditions as valid grounds for discrimination within the Canadian Humans Rights Act and Canada Labour Code.

Endnotes

Dale Smith, Sara Forte, Cherie Metcalf, and Carolynne Burkholder-James. “Genetic Privacy Legislation Goes to the SCC.” CBA National Magazine, October 4, 2019. https://www.nationalmagazine.ca/en-ca/articles/law/hot-topics-in-law/2019/genetic-privacy-legislation-goes-to-the-scc.
The Privacy Commissioner of Canada. “Genetic Testing and Privacy.” Government of Canada. Accessed February 20, 2022. https://priv.gc.ca/media/4144/02_05_11_e.pdf.
U.S. Equal Employment Opportunity Commission. “EEOC and BNSF Settle Genetic Testing Case under Americans with Disabilities Act.” Accessed February 20, 2022. https://www.eeoc.gov/newsroom/eeoc-and-bnsf-settle-genetic-testing-case-under-americans-disabilities-act-0.
Canada, Supreme Court of. “SCC Case Information - Search.” Supreme Court of Canada, December 3, 2012. https://decisions.scc-csc.ca/scc-csc/scc-csc/en/item/18417/index.do.