Bartha Maria Knoppers
Professor, Centre of Genomics and Policy, McGill University
Phone: (514) 398-8866
740 Dr Penfield Ave, Room 5214
Montréal, Québec, Canada, H3A 0G1
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.
- Beauvais, MJS, Knoppers, BM, Illes, J. A Marathon, Not a Sprint - Neuroimaging, Open Science and Ethics. Neuroimage. 2021; :118041. doi: 10.1016/j.neuroimage.2021.118041. PubMed PMID:33848622 .
- Wu, Y, Marc, I, Bouchard, L, Ouyang, F, Luo, ZC, Fan, J et al.. Study protocol for the Sino-Canadian Healthy Life Trajectories Initiative (SCHeLTI): a multicentre, cluster-randomised, parallel-group, superiority trial of a multifaceted community-family-mother-child intervention to prevent childhood overweight and obesity. BMJ Open. 2021;11 (4):e045192. doi: 10.1136/bmjopen-2020-045192. PubMed PMID:33795307 .
- Whalen, S, Shaw, M, Mignot, C, Héron, D, Bastaraud, SC, Walti, CC et al.. Further delineation of BCAP31-linked intellectual disability: description of 17 new families with LoF and missense variants. Eur J Hum Genet. 2021; :. doi: 10.1038/s41431-021-00821-0. PubMed PMID:33603160 .
- Mbuya Bienge, C, Pashayan, N, Brooks, JD, Dorval, M, Chiquette, J, Eloy, L et al.. Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada. J Pers Med. 2021;11 (2):. doi: 10.3390/jpm11020095. PubMed PMID:33540785 PubMed Central PMC7912955.
- Knoppers, BM, Bovenberg, J. In Memoriam: Gertjan van Ommen (1947-2020). Eur J Hum Genet. 2021;29 (2):217. doi: 10.1038/s41431-020-00787-5. PubMed PMID:33469158 PubMed Central PMC7868357.
- Nicol, D, Joly, Y, Kaye, J, Knoppers, B, Meslin, EM, Nielsen, J et al.. Don Chalmers: His Contributions to Legal Research and Education, Health Law, and Research Ethics, Locally and Globally. J Law Med. 2020;28 (1):289-297. . PubMed PMID:33415906 .
- O'Doherty, KC, Shabani, M, Dove, ES, Bentzen, HB, Borry, P, Burgess, MM et al.. Toward better governance of human genomic data. Nat Genet. 2021;53 (1):2-8. doi: 10.1038/s41588-020-00742-6. PubMed PMID:33414545 .
- Bovenberg, J, Peloquin, D, Bierer, B, Barnes, M, Knoppers, BM. Raising standards for global data-sharing-Response. Science. 2021;371 (6525):134-135. doi: 10.1126/science.abf5425. PubMed PMID:33414214 .
- Povysil, G, Butler-Laporte, G, Shang, N, Weng, C, Khan, A, Alaamery, M et al.. Failure to replicate the association of rare loss-of-function variants in type I IFN immunity genes with severe COVID-19. medRxiv. 2020; :. doi: 10.1101/2020.12.18.20248226. PubMed PMID:33398295 PubMed Central PMC7781338.
- Bailey, MH, Meyerson, WU, Dursi, LJ, Wang, LB, Dong, G, Liang, WW et al.. Author Correction: Retrospective evaluation of whole exome and genome mutation calls in 746 cancer samples. Nat Commun. 2020;11 (1):6232. doi: 10.1038/s41467-020-20128-w. PubMed PMID:33257764 PubMed Central PMC7705717.