Bartha Knoppers

Bartha Maria Knoppers

Professor, Centre of Genomics and Policy, McGill University

Email: bartha.knoppers@mcgill.ca
Phone: (514) 398-8866

740 Dr Penfield Ave, Room 5214
Montréal, Québec, Canada, H3A 0G1

Website

Professor Knoppers is uniquely suited to work on the ethical, legal and policy aspects of this proposed research project. She has made significant contributions to international policymaking and in 2018 alone leads or is co-applicant in 27 grants. Since her presidency of the International Ethics Committee of HUGO (1996 – 2004) and her work with the ASHG Social Issues Committee in the 1990s and in the drafting of UNESCO’s Universal Declaration on the Human Genome and Human Rights (1993-1997), she has led the ethics work of the HapMap as well as the 1000 Genomes projects. From 2000 – 2006 she served as Co-Chair of the Sampling/ELSI Committee of the 1000 Genomes Project (2007-) and as a member of the Scientific Steering Committee of the International Cancer Genome Consortium (ICGC) (2009-2017). She founded the international P3G (Public Population Project in Genomics & Society) and CARTaGENE, Quebec’s national biobank, in 2007. In 2013, she became Chair of the Regulatory and Ethics Working Group, Global Alliance for Genomics and Health (GA4GH) and member of its Steering Committee. She also serves as Director on the Canadian Council of Academics, as a member of the Bioethics Advisory Committee of Canadian Blood Services and gave the prestigious Galton Lecture in 2017, UK. Additionally, she is an Officer of the Order of Canada and of Quebec. In 2019, she was awarded the Henry G. Friesen International Prize in Health Research and was appointed to the International Commission on the Clinical Use of Human Germline Genome Editing.

Recent Publications

• Cook, CB, Pistawka, C, GenCOUNSEL Study, Elliott, AM. The impact of genetic counselor involvement in genetic and genomic test order review: A scoping review. Genet Med. 2025; :101354. doi: 10.1016/j.gim.2025.101354. PubMed PMID:39807624 .
• Goudie, C, Zawati, MH, Knoppers, BM, Laberge, AM. Genomic sequencing in paediatric oncology: navigating conflicting roles and responsibilities. J Med Genet. 2024; :. doi: 10.1136/jmg-2024-110410. PubMed PMID:39653388 .
• Kirby, E, Bernier, A, Guigó, R, Wold, B, Arzuaga, F, Kusunose, M et al.. Data sharing ethics toolkit: The Human Cell Atlas. Nat Commun. 2024;15 (1):9901. doi: 10.1038/s41467-024-54300-3. PubMed PMID:39567529 PubMed Central PMC11579383.
• Amit, I, Ardlie, K, Arzuaga, F, Awandare, G, Bader, G, Bernier, A et al.. The commitment of the human cell atlas to humanity. Nat Commun. 2024;15 (1):10019. doi: 10.1038/s41467-024-54306-x. PubMed PMID:39567491 PubMed Central PMC11579494.
• Knoppers, BM, Beauvais, MJS. Implementing the human right to science in the context of health: introduction to the special issue. J Law Biosci. 2024;11 (2):lsae018. doi: 10.1093/jlb/lsae018. PubMed PMID:39281967 PubMed Central PMC11402479.
• 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 .
• Knoppers, BM, Bonilha, AE, Laberge, AM, Ahmed, A, Newson, AJ. Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found. Eur J Hum Genet. 2024; :. doi: 10.1038/s41431-024-01677-w. PubMed PMID:39134767 .
• Kleiderman, E, Boardman, F, Newson, AJ, Laberge, AM, Knoppers, BM, Ravitsky, V et al.. Unpacking the notion of "serious" genetic conditions: towards implementation in reproductive decision-making?. Eur J Hum Genet. 2024; :. doi: 10.1038/s41431-024-01681-0. PubMed PMID:39127803 .
• Rothstein, MA, Zimmerer, KC, Andanda, P, Arawi, T, Arzuaga, F, Chen, H et al.. International scope of biomedical research ethics review. Science. 2024;385 (6705):145-147. doi: 10.1126/science.adp6277. PubMed PMID:38991077 .
• Rojas, SK, Adam, S, GenCOUNSEL Study, Elliott, AM, Zawati, MH. Genetic counselors outside of the genetics clinic: Roles, practices, and ethico-legal implications in light of lagging legal recognition across Canada. J Genet Couns. 2024; :. doi: 10.1002/jgc4.1943. PubMed PMID:38946299 .