@article{513ebecfb3a142d2abe2dde11e7a0d50,
title = "The Genetic Discrimination Observatory: Confronting novel issues in genetic discrimination",
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",
author = "{on behalf of the Genetic Discrimination Observatory (GDO)} and Yann Joly and Katherine Huerne and Mykhailo Arych and Yvonne Bombard and {De Paor}, Aisling and Dove, {Edward S.} and {Granados Moreno}, Palmira and Ho, {Calvin W.L.} and Ho, {Chih Hsing} and {Van Hoyweghen}, Ine and Hannah Kim and Audrey Lebret and Timo Minssen and {{\'O}. Cathaoir}, Katharina and Prince, {Anya E.R.} and Nair, {Athira P.S.} and Margaret Otlowski and Pepper, {Michael S.} and Rob Sladek and Lingqiao Song and Voigt, {Torsten H.} and Zawati, {Ma'n H.} and Gratien Dalp{\'e}",
note = "Funding Information: We are grateful for the financial support of the PERSPECTIVE I&I project, funded by the Government of Canada through Genome Canada and the Canadian Institutes of Health Research, the Minist?re de l??conomie et de l'Innovation du Qu?bec through Genome Qu?bec, the Qu?bec Breast Cancer Foundation, the CHU de Qu?bec Foundation, the Ontario Research Fund, and the FRQ-S/RMGA. The research of M.H.Z. is supported by the Fonds de recherche du Qu?bec ? Sant? (FQRS) Junior 1 Research Scholar programme. M.S.P. is supported by the South African Medical Research Council. I.V.H. is supported by the Fonds Wetenschappelijk Onderzoek (3H140131). K.?.C.?s contribution is supported by Innovation Fund Denmark (IFD) and NordForsk through funding to PM Heart (project 90580). The research of T.M. and A.L. is supported by the AI@Care project, which received funding from the University of Copenhagen's DATA+ pool. The research of M.O. is supported by a grant from the Australian government's Medical Research Future Fund (MRFF), ref 76721. Y.J. and E.S.D. are cochairs of the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health (GA4GH). Y.J. and Y.B. both drafted, acting in their own capacity, independent expert reports for the Canadian Supreme Court case, Reference re Genetic Non-Discrimination Act, 2020 SCC 17. The remaining authors have no interests to declare. Y.J. developed and drafted the manuscript with the assistance of K.H. Y.J. K.H. M.A. Y.B. A.D.P. E.S.D. P.G.M. C.W.L.H. C.-H.H. I.V.H. H.K. A.L. T.M. K.?.C. A.E.R.P. A.P.S.N. M.O. M.S.P. R.S. L.S. T.H.V. M.H.Z. and G.D. reviewed and edited the manuscript before approving its submission. Publisher Copyright: {\textcopyright} 2021 Elsevier Ltd",
year = "2021",
month = nov,
doi = "10.1016/j.tig.2021.08.004",
language = "English",
volume = "37",
pages = "951--954",
journal = "Trends in Genetics",
issn = "0168-9525",
publisher = "Elsevier",
number = "11",
}