Move represents an important step in ensuring protections from discrimination based on medical information

Prof. Yann Joly

New developments in preventive medicine are dependent on a broad flow of genetic data from patients and participants to researchers and clinicians. But this is not possible if there is a growing public concern about potential misuse of their genetic information. One of the most pervasive challenges of information misuse takes the form of genetic discrimination. This is particularly important within the current context of the COVID-19 pandemic. At a time when researchers need to collect samples and data from patients, including whole genome, in order to gain a better understanding about this new disease to develop effective vaccines or therapeutics, people need to feel confident that their medical information will be well protected from misuse and that they will not be discriminated against because of it.

Prof. Yann Joly, Research Director of the Centre of Genomics and Policy at McGill University and his collaborators from 16 countries have just published a commentary in Nature Genetics this week in which they present the development of the international Genetic Discrimination Observatory (GDO). A world’s first, the GDO, an online platform with physical headquarters housed at McGill, is the culmination of many years of research and commitment to the ethical, legal and social issues raised by genetic discrimination around the world. The GDO will enable a global and concerted approach to the prevention of genetic discrimination. “The GDO is a natural fit with Canada’s values of diversity and inclusion and will contribute to its leadership role in bioethics and human genetic research,” says Prof. Joly. The commentary highlights the origins of the GDO, its administrative structure and core values, as well as the tools and functionalities already available and those under development.

Genetic discrimination usually refers to individuals or a group being treated unjustly or prejudicially on the basis of their genetic characteristics. Little is known in Canada and globally about the extent and frequency of genetic discrimination. Legal efforts to address the phenomenon, mainly national and regional in scope, may also not be adapted to genetic data moving across national borders. Are people afraid of being discriminated based on their genetic and predictive health information? Do people know how to prevent genetic discrimination? In a world where genetic testing, biomarkers and precision medicine are changing medical practice, the GDO may help prevent one of the major adverse consequences of genetic and multi-omic research. Ultimately, Prof. Joly notes, that, “Preventing fear of genetic discrimination will help develop genomic research, precision medicine and the implementation of these technologies for the benefit of people globally.”

March 25, 2020