Establishing the International Genetic Discrimination Observatory

Genetic discrimination is one of the most pervasive challenges resulting from research and development in human genetics. To collaboratively study and prevent this ethical issue, we established an international Genetic Discrimination Observatory comprising a network of researchers and stakeholders from more than 19 jurisdictions.

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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 Ministère de l’Économie et de l'Innovation du Québec through Genome Québec, the Québec Breast Cancer Foundation, the CHU de Québec Foundation, the Ontario Research Fund and the FRQ-S/RMGA. The research of T.M. is supported by a Novo Nordisk Foundation grant for a scientifically independent Collaborative Research Programme (grant agreement number NNF17SA0027784). The authors would also like to thank E. Olvera, F. Brouillet, I. Ngueng Feze, M. Zawati, and present and past members of the GDO Project Team for their help in making this ambitious project succeed.

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Y.J. developed the concept of the GDO and drafted the manuscript. G.D., C.D. and Y.B. contributed to conceptualizing the GDO. Y.J., G.D., C.D., B.B.-B., A.D.P., E.S.D., P.G.M., C.W.L.H., C.-H.H., K.O.C., K.K., H.K., L.S., T.M., P.N., M.O., A.E.R.P., A.P.S.N., I.V.H., T.H.V., C.Y. and Y.B. reviewed and edited the manuscript before approving its submission.

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Correspondence to Yann Joly.

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Competing interests

Y.J. and E.S.D. are co-chairs of the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health (GA4GH). Y.J. and Y.B. both drafted, acting on their own, independent experts reports in the reference concerning the Canadian Genetic Non-Discrimination Act (2018).

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Joly, Y., Dalpé, G., Dupras, C. et al. Establishing the International Genetic Discrimination Observatory. Nat Genet 52, 466–468 (2020).

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