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.
- Majumder, P, Mhlanga, M, Shalek, A, Guigó, R, Knoppers, BM, Wold, B et al.. How to ensure the Human Cell Atlas benefits humanity. Nature. 2022;605 (7908):30. doi: 10.1038/d41586-022-01186-0. PubMed PMID:35505190 .
- Knoppers, T, Cosquer, M, Hagan, J, Nguyen, MT, Knoppers, BM. "The Stakes Are Higher"- Patient and Caregiver Perspectives on Cystic Fibrosis Research and Personalized Medicine. Front Med (Lausanne). 2022;9 :841887. doi: 10.3389/fmed.2022.841887. PubMed PMID:35402437 PubMed Central PMC8984098.
- Bernier, A, Molnár-Gábor, F, Knoppers, BM. The international data governance landscape. J Law Biosci. ;9 (1):lsac005. doi: 10.1093/jlb/lsac005. PubMed PMID:35382430 PubMed Central PMC8977111.
- Slomp, C, Morris, E, GenCOUNSEL Study, Price, M, Elliott, AM, Austin, J et al.. Correction to: The stepwise process of integrating a genetic counsellor into primary care. Eur J Hum Genet. 2022; :. doi: 10.1038/s41431-022-01063-4. PubMed PMID:35250031 .
- Ahmed, S, Lévesque, E, Garland, R, Knoppers, B, Dorval, M, Simard, J et al.. Women's perceptions of PERSPECTIVE: a breast cancer risk stratification e-platform. Hered Cancer Clin Pract. 2022;20 (1):8. doi: 10.1186/s13053-022-00214-4. PubMed PMID:35209930 PubMed Central PMC8867776.
- 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 .
- Driver, HG, Hartley, T, Price, EM, Turinsky, AL, Buske, OJ, Osmond, M et al.. Genomics4RD: An integrated platform to share Canadian deep-phenotype and multiomic data for international rare disease gene discovery. Hum Mutat. 2022;43 (6):800-811. doi: 10.1002/humu.24354. PubMed PMID:35181971 .
- Slomp, C, Morris, E, GenCOUNSEL Study, Price, M, Elliott, AM, Austin, J et al.. The stepwise process of integrating a genetic counsellor into primary care. Eur J Hum Genet. 2022; :. doi: 10.1038/s41431-022-01040-x. PubMed PMID:35095102 PubMed Central PMC8801315.
- Kleiderman, E, Rahimzadeh, V, Knoppers, B, Roy, MC, Laberge, AM, Ravitsky, V et al.. The Serious Factor in Expanded Prenatal Genetic Testing. Am J Bioeth. 2022;22 (2):23-25. doi: 10.1080/15265161.2021.2013991. PubMed PMID:35089840 .
- 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.