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

• Walker, MJ, Neely, A, Antoniou, AC, Broeders, MJM, Brooks, JD, Carver, T et al.. Barriers and Facilitators to Delivering Multifactorial Risk Assessment and Communication for Personalized Breast Cancer Screening: A Qualitative Study Exploring Implementation in Canada. Curr Oncol. 2025;32 (3):. doi: 10.3390/curroncol32030155. PubMed PMID:40136359 PubMed Central PMC11941251.
• Reveiz, M, Bouhouita-Guermech, S, Blackmore, KM, Chiquette, J, Demers, É, Dorval, M et al.. Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening. Front Genet. 2025;16 :1481863. doi: 10.3389/fgene.2025.1481863. PubMed PMID:40110039 PubMed Central PMC11919849.
• Sato, M, Muto, K, Momozawa, Y, Joly, Y. (Not So) Lost in Translation: Considering the GA4GH Diversity in Datasets Policy in the Japanese Context. Asian Bioeth Rev. 2025;17 (1):59-72. doi: 10.1007/s41649-024-00305-5. PubMed PMID:39896083 PubMed Central PMC11785831.
• Knoppers, T, Voutsinas, A, Palmour, N, Saulnier, K, Holmes, M, Charron, M et al.. "A quality of heart, of presence, and of really caring": toward affirmative intersex health communication in Canada. Front Public Health. 2024;12 :1436354. doi: 10.3389/fpubh.2024.1436354. PubMed PMID:39835313 PubMed Central PMC11743699.
• Gill, EE, Jia, B, Murall, CL, Poujol, R, Anwar, MZ, John, NS et al.. The Canadian VirusSeq Data Portal and Duotang: open resources for SARS-CoV-2 viral sequences and genomic epidemiology. Microb Genom. 2024;10 (10):. doi: 10.1099/mgen.0.001293. PubMed PMID:39401061 PubMed Central PMC11472881.
• Uberoi, D, Dalpé, G, Cheung, K, Kondrup, E, Palmour, N, Arawi, T et al.. The Key Features of a Genetic Nondiscrimination Policy: A Delphi Consensus Statement. JAMA Netw Open. 2024;7 (9):e2435355. doi: 10.1001/jamanetworkopen.2024.35355. PubMed PMID:39325459 .
• Horowitz, K, Zayhowski, K, Palmour, N, Haghighat, D, Joly, Y. Navigating the disclosure landscape: Parents' perspectives on healthcare professionals' role in supporting intersex children and families. J Genet Couns. 2025;34 (2):e1962. doi: 10.1002/jgc4.1962. PubMed PMID:39252447 PubMed Central PMC11953585.
• Raven-Adams, MC, Hernandez-Boussard, T, Joly, Y, Knoppers, BM, Chandrasekharan, S, Thorogood, A et al.. Defining and pursuing diversity in human genetic studies. Nat Genet. 2024;56 (10):1985-1988. doi: 10.1038/s41588-024-01903-7. PubMed PMID:39251787 .
• Atayan, AB, Huerne, K, Palmour, N, Joly, Y. Towards equity & inclusion: a critical examination of genetic Counselling Education on Intersex Healthcare. BMC Med Educ. 2024;24 (1):942. doi: 10.1186/s12909-024-05898-x. PubMed PMID:39210433 PubMed Central PMC11360692.
• So, D, Sladek, R, Joly, Y. Modular Ontologies for Genetically Modified People and their Bioethical Implications. Nanoethics. 2024;18 (2):9. doi: 10.1007/s11569-024-00459-4. PubMed PMID:39170757 PubMed Central PMC11333563.