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.
- Knoppers, BM, Kekesi-Lafrance, K. The Genetic Family as Patient?. Am J Bioeth. 2020;20 (6):77-80. doi: 10.1080/15265161.2020.1754505. PubMed PMID:32618508 .
- Bernier, A, Knoppers, BM. Pandemics, privacy, and public health research. Can J Public Health. 2020; :. doi: 10.17269/s41997-020-00368-5. PubMed PMID:32592023 PubMed Central PMC7318908.
- Dragojlovic, N, Borle, K, Kopac, N, Ellis, U, Birch, P, Adam, S et al.. The composition and capacity of the clinical genetics workforce in high-income countries: a scoping review. Genet. Med. 2020; :. doi: 10.1038/s41436-020-0825-2. PubMed PMID:32576987 .
- Suver, C, Thorogood, A, Doerr, M, Wilbanks, J, Knoppers, B. Bringing Code to Data: Don't Forget Governance. J. Med. Internet Res. 2020; :. doi: 10.2196/18087. PubMed PMID:32540846 .
- Wallace, SE, Kirby, E, Knoppers, BM. How Can We Not Waste Legacy Genomic Research Data?. Front Genet. 2020;11 :446. doi: 10.3389/fgene.2020.00446. PubMed PMID:32457803 PubMed Central PMC7225345.
- Narayanasamy, S, Markina, V, Thorogood, A, Blazkova, A, Shabani, M, Knoppers, BM et al.. Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe. Front Genet. 2020;11 :303. doi: 10.3389/fgene.2020.00303. PubMed PMID:32435258 PubMed Central PMC7218066.
- Lang, M, Knoppers, BM, Zawati, MH. International mHealth Research: Old Tools and New Challenges. J Law Med Ethics. 2020;48 (1_suppl):178-186. doi: 10.1177/1073110520917045. PubMed PMID:32342748 .
- Barnes, R, Votova, K, Rahimzadeh, V, Osman, N, Penn, AM, Zawati, MH et al.. Biobanking for Genomic and Personalized Health Research: Participant Perceptions and Preferences. Biopreserv Biobank. 2020;18 (3):204-212. doi: 10.1089/bio.2019.0090. PubMed PMID:32302503 .
- Unim, B, De Vito, C, Hagan, J, Villari, P, Knoppers, BM, Zawati, M et al.. The Provision of Genetic Testing and Related Services in Quebec, Canada. Front Genet. 2020;11 :127. doi: 10.3389/fgene.2020.00127. PubMed PMID:32194621 PubMed Central PMC7064617.
- Esquivel-Sada, D, Lévesque, E, Hagan, J, Knoppers, BM, Simard, J. Envisioning Implementation of a Personalized Approach in Breast Cancer Screening Programs: Stakeholder Perspectives. Healthc Policy. 2019;15 (2):39-54. doi: 10.12927/hcpol.2019.26072. PubMed PMID:32077844 PubMed Central PMC7020798.