Yann Joly

Yann Joly

Professor, Centre of Genomics and Policy

Email: yann.joly@mcgill.ca
Phone: (514) 398-7286

740 Dr Penfield Ave, Room 5101
Montréal, Québec, Canada, H3A 0G1

Website

Prof. Joly has acquired international recognition in health law, intellectual property and bioethics in the context of modern medicine. Since 2009, he has made a significant contribution to the research, development and successful implementation of controlled access mechanisms for two large academic consortia in the field of genomics: The International Cancer Genome Consortium (ICGC) (for which he is currently the Data Access Officer) and the International Human Epigenome Consortium (IHEC). These mechanisms are now used by emerging organizations and consortia as models. He is also the author of over 120 peer-reviewed publications in top legal, ethical and scientific journals, as well as numerous book chapters and two books. For the past decade, he has served as a legal and ethical consultant to numerous national and international organizations, companies and para-governmental organizations. He was invited to provide his expert testimony on the topic of genetic discrimination before the Council of Europe (2007) and the Canadian Senate Standing Committee on Human Rights (2014). He was also a Member of the 2007-2009 panel of the Canadian Academy of Health Sciences on the return on investments in health research. In 2012, he received the “Innovation Merit” award of the Quebec Bar (Lawyer Emeritus) for his contribution to the fields of privacy and biomedicine. In 2016, Prof. Joly was the recipient of the McGill University Department of Human Genetics’ Teaching Excellence Award and, in 2017, he became a fellow of the Canadian Academy of Health Sciences (CAHS).

Recent Publications

• Murtagh, MJ, Machirori, M, Gaff, CL, Blell, MT, de Vries, J, Doerr, M et al.. Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation. Wellcome Open Res. 2021;6 :311. doi: 10.12688/wellcomeopenres.17233.1. PubMed PMID:35592835 PubMed Central PMC9086526.
• Song, L, Liu, H, Brinkman, FSL, Gill, E, Griffiths, EJ, Hsiao, WWL et al.. Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic. Front Genet. 2021;12 :716541. doi: 10.3389/fgene.2021.716541. PubMed PMID:35401651 PubMed Central PMC8988250.
• Huerne, K, Palmour, N, Wu, AR, Beck, S, Berner, A, Siebert, R et al.. Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing. CRISPR J. 2022;5 (2):203-212. doi: 10.1089/crispr.2021.0094. PubMed PMID:35325565 .
• Golinghorst, D, de Paor, A, Joly, Y, Macdonald, AS, Otlowski, M, Peter, R et al.. Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective. J Law Med Ethics. 2022;50 (1):139-154. doi: 10.1017/jme.2022.18. PubMed PMID:35243989 .
• Rothstein, MA, Zawati, MH, Thorogood, A, Beauvais, MJS, Joly, Y, Brothers, KB et al.. Streamlining ethics review for international health research. Science. 2022;375 (6583):825-826. doi: 10.1126/science.abn0675. PubMed PMID:35201881 .
• Thorogood, A, Rehm, HL, Goodhand, P, Page, AJH, Joly, Y, Baudis, M et al.. International federation of genomic medicine databases using GA4GH standards. Cell Genom. 2021;1 (2):. doi: 10.1016/j.xgen.2021.100032. PubMed PMID:35128509 PubMed Central PMC8813094.
• Rehm, HL, Page, AJH, Smith, L, Adams, JB, Alterovitz, G, Babb, LJ et al.. GA4GH: International policies and standards for data sharing across genomic research and healthcare. Cell Genom. 2021;1 (2):. doi: 10.1016/j.xgen.2021.100029. PubMed PMID:35072136 PubMed Central PMC8774288.
• Tiller, JM, Keogh, LA, McInerney-Leo, AM, Belcher, A, Barlow-Stewart, K, Boughtwood, T et al.. A step forward, but still inadequate: Australian health professionals' views on the genetics and life insurance moratorium. J Med Genet. 2021; :. doi: 10.1136/jmedgenet-2021-107989. PubMed PMID:34544841 .
• Joly, Y, Huerne, K, Arych, M, Bombard, Y, De Paor, A, Dove, ES et al.. The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination. Trends Genet. 2021;37 (11):951-954. doi: 10.1016/j.tig.2021.08.004. PubMed PMID:34503867 .
• Alarie, S, Hagan, J, Dalpé, G, Faraji, S, Mbuya-Bienge, C, Nabi, H et al.. Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data. J Pers Med. 2021;11 (8):. doi: 10.3390/jpm11080726. PubMed PMID:34442372 PubMed Central PMC8398750.