Genetic Discrimination Observatory Explained

Type:Non-governmental organization
Headquarters:Centre of Genomics and Policy, McGill University
in Montreal, Quebec, Canada
Key People:Yann Joly
Fields:Genetic discrimination, Empirical research, Policy guidance, Public engagement, Provision of information and tools

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]

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.[9] [10] [11]

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.[12] [13] [14] It is planned to cover nineteen different jurisdictions.

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.[15]

See also

Notes and References

  1. Billings . P.R. . Kohn . M.A. . de Cuevas . M . Beckwith . J . Alper . J.S. . Natowicz . M.R. . Discrimination as a consequence of genetic testing . Am. J. Hum. Genet. . 1992 . 50 . 3 . 476–482. 1539589 . 1684266 .
  2. 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 . Establishing the International Genetic Discrimination Observatory . Nature Genetics . 23 March 2020 . 52 . 5 . 466–468 . 10.1038/s41588-020-0606-5. 32203466 . 214618567 .
  3. News: McGill Reporter staff . Yann Joly on the fight against genetic discrimination . April 29, 2020 . McGill Reporter . April 1, 2020.
  4. News: Staff reporter . Researchers Establish Genetic Discrimination Observatory . April 29, 2020 . Genome Web . March 24, 2020.
  5. News: Staff reporter. March 24, 2020. Researchers Establish Genetic Discrimination Observatory. Genome Web. April 29, 2020.
  6. News: Campusa. April 3, 2020. Pilar Nicolás participa en el Observatorio Internacional contra la Discriminación Genética. Campusa. 14 May 2020.
  7. Web site: RWTCH Aachen University. Veröffentlichungen zu genetischer Diskriminierung und zur Akzeptanz von Datennutzung in der Medizin. 14 May 2020. RWTCH Aachen University.
  8. Web site: Researchers Establish Genetic Discrimination Observatory. 2020-06-27. GenomeWeb. 24 March 2020 . en-us.
  9. News: Buzzetti . Helene . La discrimination génétique, un phénomène répandu ou pas? . April 29, 2020 . Le Devoir . August 10, 2018.
  10. Web site: Institut de recherche en santé publique de l'Universite de Montreal . Le forum quebecois sur la discrimination genetique . . April 29, 2020.
  11. Web site: Observatoire de la discrimination génétique . Forum . April 29, 2020.
  12. Web site: Genetic Discrimination Observatory . World view of empirical studies . April 29, 2020.
  13. Web site: Genetic Discrimination Observatory . A geographical overview of approaches adopted around the world . Genetic Discrimination Observatory . April 29, 2020.
  14. Web site: Genetic Discrimination Observatory . A geographical overview of U.S. state's laws . Genetic Discrimination Observatory . April 29, 2020.
  15. Web site: Genetic Discrimination Observatory . Report a case . April 29, 2020.

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