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 are documented cases of genetic discrimination (GD) reported in studies carried out in a limited number of countries, involving GD based on predictive test results and family history for a handful of severe, single-gene, conditions in the context of life insurance, or employment. The available evidence is extremely fragmentary and the methodology used in many studies is inconsistent. Therefore, it will be necessary in the coming years for researchers to investigate the incidence of genetic discrimination more thoroughly in order to determine if/where protection is most needed.
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
Genetic-specific laws or policies have been developed in many countries based on the belief that genetic information should be given an exceptional status and treated differently from other types of personal health information, typically by establishing heightened protections. This belief, known as genetic exceptionalism, rests on the conception that genetic information is different, more sensitive, and susceptible to privacy breaches, than other types of health information. Opponents of this belief argue that many of the concerns raised about genetic information, for example, its complexity, capacity to predict the occurrence of future diseases, capacity to identify individuals in forensic investigations, etc. are shared with other types of health information. They also feel that singling out genetics in our laws has the potential to create additional problems of justice and fairness. To this day the debate between proponents and opponents of genetic exceptionalism remains unresolved. However, the number of genetic specific anti-discrimination laws has grown steadily.
Rothstein MA (2007) Genetic exceptionalism and legislative pragmatism. J Law Med Ethics 35(2 Suppl):59–65.
Encyclopedia of Public Health, Editors: Kirch, Wilhelm (Ed.), Springer-Verlag Berlin Heidelberg, 2008.
No, it would not. The quality and scope of privacy policies and security features of private DTC-GT companies’ genetic databases are highly variable and consumers are not always informed of applicable limitations. Moreover, all contracts require good faith from contracting parties. Therefore, if it is legal to ask about genetic test results in your country, you would likely have to respond truthfully to questions regarding genetic test results that may have relevance for your health in an insurance or employment contract irrespective of where the test was performed.
Yes, the Genetic Non-Discrimination Act (hereinafter "S-201") was passed in April 2017 by the Canadian Parliament, received Royal Assent, and is applicable in Quebec and Canada. 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.
Even without being tested, it is possible for third parties to know some information about your genetic characteristics and to discriminate by asking you questions about your family history of diseases. From the limited statistical data we have, incidents of genetic discrimination are relatively few. The risk of being discriminated does vary depending on the country you live in, condition(s) you are being tested for and, results of the testing. If you are considering taking a test and are anxious about genetic discrimination, you may want to discuss this with a genetic counsellor that may be able to provide you more information about genetic discrimination and how it is addressed in your area. You should also think about why you are considering to take a test: because your doctor deems it relevant to your health, to participate in research or for recreational purposes. Genetic testing that is deemed necessary to your care by a physician should be prioritized.
These FAQs have been developed by the research team to provide general information about genetic discrimination.
The questions and answers are not intended to be exhaustive and do not constitute legal advice.