The Genetic Discrimination Observatory (GDO) is a Montreal-based international network of researchers and other stakeholders who support the research and prevention of genetic discrimination (GD)—discrimination based on genetics or other predictive health information.[1][2][3][4] Their headquarters are currently located at the Centre of Genomics and Policy at McGill University in Montreal.
Staff and funding
The GDO staff comes from various fields such as genetics, ethics, law, sociology, and public policy.[5][6][7] The GDO received initial funding from Genome Canada (Génome Québec in French), the Fonds de recherche du Québec – Santé, and the Network of Applied Medical Genetics (RMGA).[8]
Background
With increased incorporation of genomic technologies, genetic discrimination has become a multifaceted concern that can infringe upon human rights and hinder public trust in genetic services. Broadly defined, Genetic Discrimination occurs when an individual or group is unfairly treated, profiled, or harmed based on actual or presumed genetic characteristics.[9] If not adequately regulated, genetic discrimination can discourage individuals from accessing clinical genetic services or undergoing genetic testing due to concerns about the potential misuse of their genetic information. In today’s postgenomic era, where AI and other advances have made it easier for individuals to access and process personal information, it has become all the more crucial to address genetic discrimination.
Projects
Forum québécois sur la discrimination génétique
In 2018, the GDO initiated its first project, the "Forum québécois sur la discrimination génétique" (Quebec forum on genetic discrimination) in Quebec.[10][11][12]
World views
The GDO provides information about different countries and areas using interactive world views that show studies related to genetic discrimination and other categories in a live map format on the GDO's website.[13][14][15] It is planned to cover nineteen different jurisdictions.[2]
Case reporting
The GDO provides individuals from Canada, Mexico, the United Kingdom and the United States the opportunity to report specific cases of genetic discrimination or health-based discrimination confidentially.[16][2]
See also
References
- ^ Billings, P.R.; Kohn, M.A.; de Cuevas, M; Beckwith, J; Alper, J.S.; Natowicz, M.R. (1992). "Discrimination as a consequence of genetic testing". Am. J. Hum. Genet. 50 (3): 476–482. PMC 1684266. PMID 1539589.
- ^ a b c Joly, Yann; Dalpe, Gratien; Dupras, Charles; Beviere-Boyer, Benedicte; De Paor, Aisling; Dove, Edward S.; Granados Moreno, Palmira; Ho, Calvin W.L.; Ho, Chih-Hsing; O Cathaoir, Katharina; Kato, Kazuto; Kim, Hannah; Song, Lingqiao; Minssen, Timo; Nicolas, Pilar; Otlowski, Margaret; Anya, E.R. Prince; Nair, Athira P.S.; Ine, Van Hoyweghen; H. Voigt, Torsten; Yamasaki, Chisato; Bombard, Yvonne (23 March 2020). "Establishing the International Genetic Discrimination Observatory" (PDF). Nature Genetics. 52 (5): 466–468. doi:10.1038/s41588-020-0606-5. PMID 32203466. S2CID 214618567.
- ^ McGill Reporter staff (April 1, 2020). "Yann Joly on the fight against genetic discrimination". McGill Reporter. Retrieved April 29, 2020.
- ^ Staff reporter (March 24, 2020). "Researchers Establish Genetic Discrimination Observatory". Genome Web. Retrieved April 29, 2020.
- ^ Staff reporter (March 24, 2020). "Researchers Establish Genetic Discrimination Observatory". Genome Web. Retrieved April 29, 2020.
- ^ Campusa (April 3, 2020). "Pilar Nicolás participa en el Observatorio Internacional contra la Discriminación Genética". Campusa. Retrieved 14 May 2020.
- ^ RWTCH Aachen University. "Veröffentlichungen zu genetischer Diskriminierung und zur Akzeptanz von Datennutzung in der Medizin". RWTCH Aachen University. Retrieved 14 May 2020.
- ^ "Researchers Establish Genetic Discrimination Observatory". GenomeWeb. 24 March 2020. Retrieved 2020-06-27.
- ^ Kaiser, Beatrice; Uberoi, Diya; Raven-Adams, Maili C.; Cheung, Katherine; Bruns, Andreas; Chandrasekharan, Subhashini; Otlowski, Margaret; Prince, Anya E. R.; Tiller, Jane; Ahmed, Arzoo; Bombard, Yvonne; Dupras, Charles; Moreno, Palmira Granados; Ryan, Rosalyn; Valderrama-Aguirre, Augusto (July 2024). "A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate". Nature Genetics. 56 (7): 1339–1345. doi:10.1038/s41588-024-01786-8. ISSN 1546-1718.
- ^ Buzzetti, Helene (August 10, 2018). "La discrimination génétique, un phénomène répandu ou pas?". Le Devoir. Retrieved April 29, 2020.
- ^ Institut de recherche en santé publique de l'Universite de Montreal. "Le forum quebecois sur la discrimination genetique". YouTube. Retrieved April 29, 2020.
- ^ Observatoire de la discrimination génétique. "Forum". Retrieved April 29, 2020.
- ^ Genetic Discrimination Observatory. "World view of empirical studies". Retrieved April 29, 2020.
- ^ Genetic Discrimination Observatory. "A geographical overview of approaches adopted around the world". Genetic Discrimination Observatory. Retrieved April 29, 2020.
- ^ Genetic Discrimination Observatory. "A geographical overview of U.S. state's laws". Genetic Discrimination Observatory. Retrieved April 29, 2020.
- ^ Genetic Discrimination Observatory. "Report a case". Retrieved April 29, 2020.