FAQ

Genetic discrimination involves an individual or a group being negatively treated, unfairly profiled or harmed, relative to the rest of the population, on the basis of actual or presumed genetic characteristics. The information contained in an individual's DNA and other OMIC data can uniquely identify or provide some information about the person, including the future probability of the individual developing certain diseases. This information may therefore be of interest to third parties. In a similar manner to sexual, ethnic, or disability-based discrimination, genetic discrimination is a source of exclusion. It can have the effect of limiting the social and professional opportunities of a person thus becoming a source of psychological distress.

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.

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 more 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 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.

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 (hereafter "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 offence to require a person to undergo a genetic test or 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 report the results. Finally, it amends the Canadian Human Rights Act to prohibit discrimination in the federal jurisdiction based on a person's genetic characteristics.

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: In December 2018, the Quebec Court of Appeal of Quebec declared that the core of S-201 (sections 1-7) is not constitutionally valid. Following the ruling by the Court of Appeal of Quebec, the Canadian Coalition for Genetic Fairness, acting as an “intervener” when the Court of Appeal heard the case, appealed the Court of Appeal’s decision to the Supreme Court. In July 2020, in a 5-4 decision, the Supreme Court of Canada upheld the validity of S-201 (2020) and maintained that Parliament had the power to create these rules.

Although S-201 is an important first step, it does not solve all the challenges posed by genetic discrimination.

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 obtain some information about your genetic characteristics and to discriminate against you by asking questions about your familial history of diseases. From the limited statistical data we have, incidents of genetic discrimination are relatively few. The risk of being discriminated varies depending on the country you live in, the condition(s) you are being tested for, and the test results. If you are considering taking a test and are anxious about genetic discrimination, one potential avenue is discussing this with a genetic counsellor that may be able to provide you with more information about genetic discrimination and how it is addressed in your area. It would be best to think about why you are considering taking the test: for example, 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.