March 27, 2023
What is genetic discrimination?
People become victims of genetic discrimination when they are treated differently due to possessing a specific gene mutation or a constellation of low-impact genetic variants (polygenic risk) thought to impact health. Concern about genetic discrimination is largely concentrated on the realms of insurance and employment, especially due to mutations that increase the risk of hereditary disorders. Internationally, insurance companies may require genetic testing or access to the results of genetic testing and may refuse to insure or charge higher premiums to individuals with genetic mutations. Employers may avoid hiring or promoting or may dismiss employees at risk of developing hereditary disorders in order to avoid higher disability insurance costs, reduce absenteeism and employee turnover, or protect their investments in employee training.
The incidence of genetic discrimination in Canada is likely quite low, but fear of genetic discrimination is much more common. For example, in a survey of people with a close family member suffering from Huntington’s disease—and therefore at a significant risk of developing the disease themselves—fewer than half of respondents indicated that they had experienced genetic discrimination, but most (86%) feared genetic discrimination for themselves and for their family members.
How does genetic discrimination happen?
Several studies have revealed that fear of genetic discrimination, particularly in insurance and employment, prevents many Canadians from undergoing genetic testing. Genetic testing often provides valuable medical information and guides preventative or treatment measures. The same fear prevents many Canadians from participating in genetic research that can potentially identify new treatments for hereditary conditions.
Genetic information differs from other kinds of health information in several regards: it can predict future health outcomes; it is a unique identifier; it can reveal information about family members or members of the same racial or ethnic group; and it is passed from parent to child. Given the rapid pace of advances in genetic science, it is very likely that new findings will generate increasingly sensitive knowledge about everyone.
How is genetic discrimination relevant to Canada?
In Canada, the federal government has successfully passed a law prohibiting genetic discrimination. Bill S-201, or the Genetic Non-Discrimination Act (GNDA), passed into law on May 4th 2017. Along with amendments in the Canadian Labour Code and the Canadian Human Rights Act, the Act prohibits employers and companies from requiring genetic testing or the results of a genetic test as a condition of providing goods or services or of entering into or continuing a contract. Further, they cannot collect, use, or disclose a person’s genetic test results without the person’s written consent. In July 2020, the Supreme Court of Canada upheld the constitutionality of the GNDA after a jurisdictional conflict.
Canada has one of the strongest policies in the world. It applies to everyone, across all sectors, across the country. The only exceptions are health care practitioners (with respect to their patients) and persons conducting medical, pharmaceutical, or scientific research (with respect to their participants).
Genome Canada and Genome Quebec (along with Quebec’s Network of Applied Genetic Medicine) fund The Genetic Discrimination Observatory, a network of researchers and stakeholders exploring this issue in Canada and world-wide. In November 2021, they published a summary of their actions.
The Charter of Rights and Freedoms and the Canadian Human Rights Act provide protections against many different forms of discrimination, including discrimination on the basis of race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability, and pardoned convictions. Despite this, genetic discrimination still remains a source of psychological distress in family and social settings as people may share their genetic information and/or family history.
The COVID-19 pandemic has raised further issues of the potential of stratifying health outcomes by genetic test results during a pandemic. If a strong relationship was discovered between genetic make-up and virus susceptibility or severity of illness, it could influence public health measures for high-risk individuals.