Diya Uberoi, McGill University and Yann Joly, McGill University
February 23, 2024
The advancement of genetic technologies in the past three decades has spotlighted the urgent need to address genetic discrimination. Genetic discrimination is the differential adverse treatment or unfair profiling of an individual relative to the rest of the population based on actual or presumed genetic information.
If not regulated, genetic discrimination has the potential to infringe on people’s privacy and fundamental freedoms. This in turn may deter people from accessing clinical genetic services and testing based on concerns about how their personal information may be used.
Evidence from a growing number of countries shows that a person’s genetic information can be misused by third parties. A person may be refused employment or insurance based on an assumption that they may develop a life-threatening disease.
New avenues for discrimination
While instances of genetic discrimination have primarily arisen in the context of life insurance, the wider use of genetic testing and data usage in non-health settings has introduced new avenues for discrimination to occur.
Recently, genetic discrimination has taken on many forms, with reports emerging in education, access to property, sports, adoption and crime prevention.
In an effort to prevent genetic discrimination and advance research, the Canadian Parliament adopted the Genetic Non-Discrimination Act (GNDA) in 2017. Broadly understood, the GNDA prohibits the imposition and use of genetic test results as a condition to access goods and services.
The GNDA also makes “genetic characteristics” a prohibited ground for discrimination under the Canadian Human Rights Act and prohibits the use of genetic testing in matters of employment under the Canadian Labour Code.
After a series of revisions, debates and legal challenges, the GNDA was finally confirmed in 2020 by the Supreme Court of Canada.
A modest impact
Our research at McGill University’s Centre of Genomics and Policy investigated the impact of the GNDA. We focused on genetic discrimination in the context of purchasing life insurance coverage from private insurers — an area that has received significant attention in genetic discrimination literature.
We found that the GNDA has had only a modest impact on the underwriting practices of Canadian life insurance companies. The researchers reviewed 16 application forms, accounting for almost 50 per cent of the life insurance companies in Québec.
The study demonstrated that, while a small number of companies are taking steps to comply with the GNDA, the impact of the law on the industry as a whole has been limited. Only four companies explicitly stated that applicants should not submit genetic test results.
The study also confirmed that it is possible for life insurers to circumvent the law by asking broadly phrased questions regarding genetic information that would not qualify as “results,” prompting voluntary submission of genetic results.
Preventing genetic discrimination
While the GNDA marks an important first step in curtailing the spread of genetic discrimination, it appears that further steps will be necessary to prevent it.
Our study also raises fundamental questions about the opacity of the practices of the personal insurance industry in Canada, the limits of data protection legislation and the need to consider the potential discriminatory impact of third parties’ use of predictive health data in general.
We recommend the adoption of provincial regulations to provide more comprehensive protections, beyond those in the GNDA. Inclusive societal conversations and debate are also needed to further identify and design additional safeguards against discrimination.
Ultimately, given the lack of clarity around practices of insurers, there is a need for dialogue with the Canadian Life and Health Insurance Association to encourage greater transparency around the underwriting process.
Diya Uberoi, Academic Associate, Centre of Genomics and Policy, McGill University and Yann Joly, James McGill Professor, Department of Human Genetics and Health Sciences, McGill University
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This article is republished from The Conversation under a Creative Commons license. Read the original article.