Research Director of the Centre of Genomics and Policy and Associate Professor at the Department of Human Genetics, Yann Joly is a Lawyer Emeritus from the Quebec Bar and a Fellow of the Canadian Academy of Health Sciences. He is currently a member of the Quebec task force on the COVID-19 Biobank.
Last week, Joly and his collaborators from 16 countries announced the establishment of the international Genetic Discrimination Observatory (GDO). A world first, the GDO is an online platform committed to preventing the misuse of a patient’s genetic information. This is particularly important within the current context of the COVID-19 pandemic when researchers are collecting samples and data from patients in order to better understand this new disease and develop effective vaccines or therapeutics.
In this Q&A, Joly gives readers more information on genetic discrimination and what is being done to combat it.
Genetic discrimination (GD) means treating people differently from the rest of the population or unfairly profiling them based on actual or presumed genomic and other predictive medical data. The genetic information contained in an individual’s DNA can uniquely identify or provide some information about a person, including future probabilities that this individual will develop diseases. Other predictive health information, such as biomarkers, can also be used to discriminate and should also be considered under the GD heading.
This information can be of interest to third parties like insurers, employers, or government officials. Like sexual, ethnic or disability-based discrimination, genetic discrimination is a source of exclusion and can limit the social and professional opportunities of a person thus becoming a source of psychological distress.
There are documented cases of GD reported in studies carried out in a limited number of countries 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 fragmentary, and the methodology used in many studies is inconsistent.
The Genetic Non-Discrimination Act (hereinafter “S-201”) was passed in April 2017 and is currently applicable in Canada. While it does not solve all the challenges posed by genetic discrimination, it is an important first step. The Act generally 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. However, the Quebec Court of Appeal recently declared that the core elements of S-201 were not constitutionally valid.
This decision was appealed to the Supreme Court of Canada and we are currently waiting for their decision on the matter. In the meantime, S-201 continue to be applied. If the Supreme Court is of a similar opinion to that of the Court of Appeal, it could be invalidated.
In addition to the protection provided by S-201, Canadian privacy laws would fully apply to genetic data, which is considered personal information.
Genetic information is increasingly shared across national borders or transcending them, thus limiting the effectiveness of protections built solely around national approaches. Strictly legal solutions, because they tend to be static, are also challenged to keep pace with rapidly evolving science such as genetics.
At its core discrimination is a social phenomenon that needs to be addressed collaboratively and internationally by all stakeholders. The GDO will provide the platform to undertake this important work, which will include documenting instances of genetic discrimination, identifying most effective preventing measures and conveying information, tools and good practices to all stakeholders including the public.
COVID-19 presents Quebecers with an unprecedented health threat that requires us to stand together as a society and take action to protect one another and help find medical solutions to the disease. The COVID-19 Biobank provides us a unique opportunity to learn more about the biological foundations of the disease, individuals at risk and preventive solutions.
The risk of discrimination associated with providing a biological sample and medical information to the Biobank is very small. The data provided is research information that is not clinically validated and should be of no interest to most third parties. Moreover, the collected information is coded, and protected by confidentiality laws and robust security measures. Furthermore, data access will be subject to ethics approval and in some cases controlled access measures.
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