The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination

Yann Joly; Katherine Huerne; Mykhailo Arych; Yvonne Bombard; Aisling De Paor; Edward S Dove; Palmira Granados Moreno; Calvin W L Ho; Chih-Hsing Ho; Ine Van Hoyweghen; Hannah Kim; Audrey Lebret; Timo Minssen; Katharina Ó Cathaoir; Anya E R Prince; Athira P S Nair; Margaret Otlowski; Michael S Pepper; Rob Sladek; Lingqiao Song; Torsten H Voigt; Ma'n H Zawati; Gratien Dalpé; Genetic Discrimination Observatory (GDO)

doi:10.1016/j.tig.2021.08.004

The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination

Trends Genet. 2021 Nov;37(11):951-954. doi: 10.1016/j.tig.2021.08.004. Epub 2021 Sep 6.

Authors

Yann Joly¹, Katherine Huerne¹, Mykhailo Arych², Yvonne Bombard³, Aisling De Paor⁴, Edward S Dove⁵, Palmira Granados Moreno¹, Calvin W L Ho⁶, Chih-Hsing Ho⁷, Ine Van Hoyweghen⁸, Hannah Kim⁹, Audrey Lebret¹⁰, Timo Minssen¹¹, Katharina Ó Cathaoir¹⁰, Anya E R Prince¹², Athira P S Nair¹³, Margaret Otlowski¹⁴, Michael S Pepper¹⁵, Rob Sladek¹⁶, Lingqiao Song¹, Torsten H Voigt¹⁷, Ma'n H Zawati¹, Gratien Dalpé¹⁸; Genetic Discrimination Observatory (GDO)

Affiliations

¹ Centre of Genomics and Policy, McGill University, 740 avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada.
² Department of Finance, National University of Food Technologies, 68 Volodymyrska Str., 01601 Kiev, Ukraine.
³ Institute of Health Policy, Management and Evaluation, University of Toronto, Li Ka Shing Knowledge Institute of St. Michael's Hospital, Unity Health Toronto 30 Bond Street, Toronto, Ontario, M5B 1W8, Canada.
⁴ School of Law and Government, Dublin City University, DCU Glasnevin Campus, Dublin 9, Ireland.
⁵ School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh, EH8 9YL, UK.
⁶ Faculty of Law, University of Hong Kong, 10/F, Cheng Yu Tung Tower, Centennial Campus, Pokfulam Road, Hong Kong, China.
⁷ Institute of European and American Studies, Academia Sinica, No. 128, Section 2, Academia Road, Nangang District, Taipei 115, Republic of China.
⁸ Centre for Sociological Research, Catholic University of Leuven, Parkstraat 45 - Box 3601, 3000 Leuven, Belgium.
⁹ Division of Medical Humanities and Society, Department of Medical Law and Ethics, College of Medicine, Yonsei University, 50 Yonsei-ro, Sinchon-dong, Seodaemun-gu, Seoul, South Korea.
¹⁰ Legal Studies in Welfare and Market (WELMA), Faculty of Law, University of Copenhagen, Karen Blixens Plads 16, DK-2300 Copenhagen S, Denmark.
¹¹ Center for Advanced Studies in Biomedical Innovation Law (CeBIL), Faculty of Law. University of Copenhagen, Karen Blixens Plads 16, DK-2300 Copenhagen S, Denmark.
¹² University of Iowa Genetics Cluster, 280 Boyd Law Building, Iowa City, IA 52242, USA.
¹³ National University of Advanced Legal Studies, NAD Road, HMT Colony, North Kalamassery, Kochi, Kerala 683503, India.
¹⁴ Centre for Law and Genetics, University of Tasmania, Churchill Avenue, Hobart, Tasmania 7005, Australia.
¹⁵ Institute for Cellular and Molecular Medicine, Department of Immunology, University of Pretoria, Private Bag x 20, Hatfield 0028, South Africa; SAMRC Extramural Unit for Stem Cell Research and Therapy, Faculty of Health Sciences, University of Pretoria, 15 Bophelo Road, Prinshof Campus, Pretoria 0084, South Africa.
¹⁶ Departments of Medicine and Human Genetics, McGill University, Montreal, Quebec, Canada; Genome Quebec Innovation Centre, 740 Penfield, Montreal, Quebec, H3A 0G1, Canada.
¹⁷ Institute of Sociology, Rheinisch-Westfälische Technische Hochschule Aachen University, Eilfschornsteinstraße 7, 52062 Aachen, Germany.
¹⁸ Centre of Genomics and Policy, McGill University, 740 avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada. Electronic address: gratien.dalpe@mcgill.ca.

PMID: 34503867
DOI: 10.1016/j.tig.2021.08.004

Abstract

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

Keywords: ethical, legal, and social implications (ELSI); genetic databases; genetic discrimination; insurance contract; intersex; moratorium.

Publication types

Research Support, Non-U.S. Gov't