In May 2017, a law was passed in the Canadian Parliament to prohibit and prevent genetic discrimination: the Genetic Non-Discrimination Act (GNA). The Quebec government challenged the act, calling it unconstitutional because it infringed on the regulation of the insurance industry, which is regulated by provincial governments. Although the Quebec Court of Appeals ruled in favour of the Quebec government, that ruling was challenged by the Coalition for Genetic Fairness before the Supreme Court.
On July 10, 2020, the Supreme Court upheld the federal law, which means that Canadians who believe that they may carry a gene that makes them more susceptible to certain cancers or other illnesses can undergo genetic testing without fear of discrimination. Violators of the act may be fined up to one million dollars and be imprisoned for up to five years.1
In a survey of individuals with a family history of Huntington disease, carried out by Dr. Yvonne Bombard, a genomics and policy researcher with the Li Ka Shing Knowledge Institute at St. Michael’s Hospital in Toronto, and colleagues, it was found that of the individuals surveyed, “…86% feared genetic discrimination; 40% actually experienced it (mainly by providers of life and long-term disability insurance); and those with positive genetic tests reported more experiences of genetic discrimination.”2
Similar reports were made by individuals with cancer. Business and homeowners were not able to get life insurance to back up loans because details of genetic testing had been shared with insurance companies, which decided that insuring these individuals was not worth the risk.
The GNA protects the details of genetic tests belonging to Canadians from being shared with anyone without written consent. These tests may be done by a doctor to diagnose an illness, to determine if an individual or family is at risk for a specific disease, or for a research study. The Act also protects Canadians from having to take a genetic test as a condition of being covered by insurance or entering into any other contract, such as employment. A similar law was passed in the United States in 2008, and by the European Union in 2000.
Eliminating the fear of genetic discrimination may encourage more people to have genetic testing. Although a genetic test will not tell someone if they will be diagnosed with a certain disease or cancer, it does inform them of the risk. This knowledge may help people undertake lifestyle changes which may decrease the risk of being diagnosed with the illness in question. Genetic information may also help clinicians make an early diagnosis. Bombard and her colleagues shared that, “Advances in genomic science are providing unprecedented opportunities to better facilitate the prevention, treatment and early diagnosis of many diseases.”3