Genetic discrimination

In recent years, genetic research has made it possible to develop tests to predict the risk of occurrence of several diseases, such as breast cancer, Alzheimer’s disease or an individual’s response to certain medications. However, the number of diagnostic or predictive genetic tests ensuring a high level of reliability remains quite limited. The arrival on the market of next-generation sequencers will allow, over the next few years, increasingly rapid and affordable access to genome sequencing, at the same time propelling the use of genomics to identify genes predisposing to certain diseases.

Genetic information can also be used outside the medical context. This is particularly the case during genealogical studies and DNA tests aimed at demonstrating biological filiation between family members, or criminal investigations aimed at confirming the identity of a suspect.

However, when the use of genetic information does not respect social values ​​and fundamental rights, then this can give rise to discriminatory situations. This is called genetic discrimination: a person is improperly profiled, or treated negatively on the basis of their genetic characteristics (presumed or proven). Like sexual, ethnic or disability-based discrimination, genetic discrimination can be a source of exclusion. It can have the effect of limiting a person’s social and professional opportunities. For example, insurers could use genetic information to determine the level of risk presented by a potential customer. An employer could avoid hiring a person if he judges that his genetic risks make him likely to be absent too often due to illness.

There is some evidence that genetic discrimination disproportionately affects already vulnerable or marginalized groups in society, such as people affected by hereditary and orphan diseases, visible minorities including aboriginal populations, immigrants, prisoners and transgender people. The fear of being the victim of genetic discrimination may even motivate some individuals to refuse to take genetic tests necessary for medical diagnosis or to participate in genetic research. The experience of genetic discrimination has been associated with psychological distress for affected individuals.

In Canada, the Genetic Non-Discrimination Act, passed in April 2017, makes it a criminal offense to compel a person to undergo a genetic test or report the results as a condition of providing goods and services. or the conclusion of a contract. However, it provides for exceptions relating to the use of genetic test results by health professionals and researchers. In addition, it amends the Canadian Human Rights Act to prohibit discrimination based on genetic characteristics within federal jurisdiction.

Currently, there is no large-scale empirical study to assess the extent of genetic discrimination in Québec or Canada.

Adapted by:

Y. JOLY, C. DUPRAS, I. NGUENG FEZE & L. SONG (2017). GENETIC DISCRIMINATION IN QUÉBEC – A FLEXIBLE AND PROACTIVE APPROACH TO ADDRESS A COMPLEX SOCIAL ISSUE – Policy Brief
Available here: https://www.genomequebec.com/DATA/PUBLICATION/32_en.pdf