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Establishing the International Genetic Discrimination Observatory

Nature Genetics volume 52, pages 466–468 (2020)Cite this article

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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.

In 1997, representatives of 77 national delegations in attendance at the United Nations Educational, Scientific and Cultural Organization’s 29th session unanimously adopted the Universal Declaration on the Human Genome and Human Rights. The first article of this fundamental human rights text is probably the best known, stating: “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity.”

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Acknowledgements

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.

Author information

Authors and Affiliations

  1. Department of Human Genetics, Faculty of Medicine, McGill University, Montréal, Québec, Canada

    Yann Joly, Gratien Dalpé, Charles Dupras, Palmira Granados Moreno & Lingqiao Song

  2. Université de Paris 8, Paris, France

    Bénédicte Bévière-Boyer

  3. School of Law and Government, Dublin City University, Dublin, Ireland

    Aisling de Paor

  4. School of Law, University of Edinburgh, Edinburgh, UK

    Edward S. Dove

  5. Faculty of Law, University of Hong Kong, Hong Kong, China

    Calvin W. L. Ho

  6. Academia Sinica, Taipei, Taiwan

    Chih-Hsing Ho

  7. Centre for Advanced Studies in Biomedical Innovation Law (CeBIL) and Centre for Legal Studies in Welfare and Market (WELMA), University of Copenhagen, Copenhagen, Denmark

    Katharina Ó Cathaoir & Timo Minssen

  8. Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan

    Kazuto Kato & Chisato Yamasaki

  9. Asian Institute for Bioethics and Health Law, College of Medicine, Yonsei University, Seoul, South Korea

    Hannah Kim

  10. Faculty of Law, Chair in Law and the Human Genome, University of the Basque Country, Leioa, Spain

    Pilar Nicolás

  11. Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, Tasmania, Australia

    Margaret Otlowski

  12. College of Law, University of Iowa , Iowa City, IA, USA

    Anya E. R. Prince

  13. National University of Advanced Legal Studies, Kochi, Kerala, India

    Athira P. S. Nair

  14. Centre for Sociological Research (CeSO), Leuven Institute for Genomics and Society (LIGAS), KU Leuven, Leuven, Belgium

    Ine Van Hoyweghen

  15. Institute of Sociology, RWTH Aachen University, Aachen, Germany

    Torsten H. Voigt

  16. Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada

    Yvonne Bombard

Authors
  1. Yann Joly
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  19. Ine Van Hoyweghen
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  21. Chisato Yamasaki
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  22. Yvonne Bombard
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Contributions

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.

Corresponding author

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). https://doi.org/10.1038/s41588-020-0606-5

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