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.
- Bernier, A, Liu, H, Knoppers, BM. Computational tools for genomic data de-identification: facilitating data protection law compliance. Nat Commun. 2021;12 (1):6949. doi: 10.1038/s41467-021-27219-2. PubMed PMID:34845213 PubMed Central PMC8630085.
- Wainstein, T, Marshall, SK, Ross, CJD, Virani, AK, Austin, JC, Elliott, AM et al.. Experiences With Genetic Counseling, Testing, and Diagnosis Among Adolescents With a Genetic Condition: A Scoping Review. JAMA Pediatr. 2021; :. doi: 10.1001/jamapediatrics.2021.4290. PubMed PMID:34807246 .
- Polygenic Risk Score Task Force of the International Common Disease Alliance. Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps. Nat Med. 2021;27 (11):1876-1884. doi: 10.1038/s41591-021-01549-6. PubMed PMID:34782789 .
- Vears, DF, Minion, JT, Roberts, SJ, Cummings, J, Machirori, M, Blell, M et al.. Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PLoS One. 2021;16 (11):e0258646. doi: 10.1371/journal.pone.0258646. PubMed PMID:34748551 PubMed Central PMC8575249.
- Lang, M, Bernier, A, Knoppers, BM. AI in Cardiovascular Imaging: "Unexplainable" Legal and Ethical Challenges?. Can J Cardiol. 2021; :. doi: 10.1016/j.cjca.2021.10.009. PubMed PMID:34737036 .
- Luu, JM, Sergeant, AK, Anand, SS, Desai, D, Schulze, K, Knoppers, BM et al.. The impact of reporting magnetic resonance imaging incidental findings in the Canadian alliance for healthy hearts and minds cohort. BMC Med Ethics. 2021;22 (1):145. doi: 10.1186/s12910-021-00706-3. PubMed PMID:34711210 PubMed Central PMC8551943.
- Pashayan, N, Antoniou, AC, Lee, A, Wolfson, M, Chiquette, J, Eloy, L et al.. Should Age-Dependent Absolute Risk Thresholds Be Used for Risk Stratification in Risk-Stratified Breast Cancer Screening?. J Pers Med. 2021;11 (9):. doi: 10.3390/jpm11090916. PubMed PMID:34575693 PubMed Central PMC8469877.
- Knoppers, BM, Bernier, A, Granados Moreno, P, Pashayan, N. Of Screening, Stratification, and Scores. J Pers Med. 2021;11 (8):. doi: 10.3390/jpm11080736. PubMed PMID:34442379 PubMed Central PMC8398020.
- Alarie, S, Hagan, J, Dalpé, G, Faraji, S, Mbuya-Bienge, C, Nabi, H et al.. Risk-Stratified Approach to Breast Cancer Screening in Canada: Women's Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data. J Pers Med. 2021;11 (8):. doi: 10.3390/jpm11080726. PubMed PMID:34442372 PubMed Central PMC8398750.
- Master, Z, Lovell-Badge, R, Knoppers, B. ISSCR guidelines uphold human right to science for benefit of all. Nature. 2021;595 (7868):494. doi: 10.1038/d41586-021-01959-z. PubMed PMID:34285410 .