Genetic discrimination involves treating differently and negatively or unfairly profiling an individual relative to the rest of the population on the basis of actual or presumed genetic characteristics. In fact, the information contained in an individual's DNA can uniquely identify or provide some information about the person, including the future probability that this individual will develop diseases. This information may therefore be of interest to third parties. Like sexual, ethnic or disability-based discrimination, genetic discrimination is a source of exclusion. Thus, it can have the effect of limiting the social and professional opportunities of a person thus becoming a source of psychological distress.
Yann JOLY et al., « La discrimination génétique au Québec » (2017) Document d’orientation politique en ligne : <http://www.genomequebec.com/DATA/PUBLICATION/32_fr~v~La_discrimination_genetique_au_Quebec_-_document_d_orientation_politique.pdf >
There is currently no scientific study on genetic discrimination in Quebec. In Canada, the only significant empirical studies to date have been conducted in the context of Huntington's Chorea (Huntington's disease). It is a rare neurodegenerative genetic disease that is potentially fatal to the person with the disease. One of these studies (Bombard et al., 2009), conducted among 233 people without symptoms of the disease, reports that more than one-third of respondents reported having experienced genetic discrimination, most often in insurance (29, 2%), in a family environment (15.5%) or during social interactions (12.4%). A number of legal cases (Canadian court decisions) also demonstrate the interest of Canadian government officials in obtaining the DNA test results of some immigrants, for example, for identification or establishment purposes. biological filiation in the context of family reunification applications.
Elsewhere in the world, several studies on genetic discrimination have been undertaken (Joly et al., 2013). The modest size of these studies, the differences in approaches used, the accidental appearance of several cases of genetic discrimination reported by the researchers, as well as several methodological flaws make it difficult to draw firm conclusions about the magnitude of the problem and the existence of widespread discriminatory practices on the part of insurers or other third parties. According to these studies, genetic discrimination in the context of Huntington's disease, however, seems to be a proven fact.
Yvonne BOMBARD et al., "Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey" (2009) 338 BMJ b2175.
Yann JOLY et al., "Genetic discrimination and life insurance: A systematic review of the evidence" (2013) 11:1 BMC medicine 25.
Yann JOLY et al., "DNA testing for family reunification in Canada: Points to consider" (2017) 18:2 Journal of International Migration and Integration 391
Yes, the Genetic Non-Discrimination Act (hereinafter "S-201") was passed in April 2017 by the Canadian Parliament, received Royal Assent, and is also applicable in Quebec. The Act makes it a criminal offense to require a person to undergo a genetic test or to report the results as a condition precedent to the provision of goods and services, the conclusion or continuation of a contract or any part thereof. an agreement, or the offer or maintenance of specific terms in a contract or agreement. However, it provides exceptions for the use of genetic test results by health professionals and researchers. S-201 also amends the Canada Labor Code to prohibit federal employers from requiring their employees to undergo genetic testing or reporting the results. Finally, it amends the Canadian Human Rights Act to prohibit discrimination in the federal jurisdiction based on the genetic characteristics of a person.
The law still allows individuals to voluntarily submit their genetic information to a co-contracting party, if they wish, with their written consent.
Important update: The Quebec Court of Appeal of Quebec, however, recently declared that the core of S-201 (sections 1-7) is not constitutionally valid (December 2018). This decision is presently appealed to the Supreme Court of Canada. Although S-201 is an important first step, it does not solve all the challenges posed by genetic discrimination.
Yann JOLY et al., « La discrimination génétique au Québec » (2017) Document d’orientation politique en ligne : <http://www.genomequebec.com/DATA/PUBLICATION/32_fr~v~La_discrimination_genetique_au_Quebec_-_document_d_orientation_politique.pdf>
Julian WALKER, La discrimination génétique dans le droit canadien, Étude générale, Bibliothèque du Parlement, Ottawa, 2014, no 2014-90-F en ligne : <http://www.parl.gc.ca/Content/LOP/ResearchPublications/2014-90-f.pdf>
No, despite being often cited in newspaper articles, this claim is incorrect.
Japan has not adopted any laws on genetic discrimination, while the United Kingdom has preferred a less constraining administrative solution (a moratorium between the Association of British Insurers and the British government) to protect its citizens. Even in G7 countries that have adopted such laws, the breadth of the protection varies considerably. For example, GINA, the Federal legislation in force in the United States, does not apply to life insurance while the Canadian Genetic Non-Discrimination Act proposes a broader protection that encompasses all contracts involving goods and services.