Genetic Discrimination Observatory
| Founded | June 2018 |
|---|---|
| Type | Non-governmental organization |
| Headquarters | Centre of Genomics and Policy, McGill University in Montreal, Quebec, Canada |
| Fields | Genetic discrimination, Empirical research, Policy guidance, Public engagement, Provision of information and tools |
Key people | Yann Joly (Research Director) Diya Uberoi (Associate Director) |
| Website | gdo |
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
[edit]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
[edit]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.
Mission
[edit]With the aim to prevent genetic discrimination, the GDO seeks to develop multidisciplinary solutions that can be adopted by researchers, policymakers and other stakeholders globally. Over the years, the network has created a range of policy and educational tools to identify, prevent, and respond to instances of genetic discrimination. Some of these tools include:
Maps used to monitor:
[edit]- Legal frameworks against genetic discrimination
- Empirical studies on genetic discrimination in life insurance
- U.S. state laws and international regulations
- Number of DNA profiles collected by governments in G20 countries
Collection of Personal Accounts of Genetic Discrimination used to document:
[edit]- Real-life cases of genetic discrimination
- Personal experiences shared by affected individuals
- Insights into the impact of genetic discrimination
Educational Resources designed to raise awareness and promote understanding, including:
[edit]- A Resource hub on the GDO website
- Educational videos
- Definitions and case studies
See also
[edit]References
[edit]- ^ 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.
- ^ 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.