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, 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 .
- Beauvais, MJS, Thorogood, AM, Szego, MJ, Sénécal, K, Zawati, MH, Knoppers, BM et al.. Corrigendum: Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility. Front Genet. 2021;12 :725850. doi: 10.3389/fgene.2021.725850. PubMed PMID:34276804 PubMed Central PMC8284047.
- Lewis, ACF, Knoppers, BM, Green, RC. An international policy on returning genomic research results. Genome Med. 2021;13 (1):115. doi: 10.1186/s13073-021-00928-5. PubMed PMID:34266500 PubMed Central PMC8281644.
- Lambert, DM, Patrinos, D, Knoppers, BM, GenCOUNSEL Study, Zawati, MH. Genetic counselors and legal recognition: A made-for-Canada approach. J Genet Couns. 2021; :. doi: 10.1002/jgc4.1468. PubMed PMID:34265864 .
- Brooks, JD, Nabi, HH, Andrulis, IL, Antoniou, AC, Chiquette, J, Després, P et al.. Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation (PERSPECTIVE I&I). J Pers Med. 2021;11 (6):. doi: 10.3390/jpm11060511. PubMed PMID:34199804 PubMed Central PMC8226444.
- Bernier, A, Knoppers, BM. Longitudinal Health Studies: Secondary Uses Serving the Future. Biopreserv Biobank. 2021; :. doi: 10.1089/bio.2020.0171. PubMed PMID:34171963 .
- Knoppers, BM, Beauvais, MJS. Three decades of genetic privacy: A metaphoric journey. Hum Mol Genet. 2021; :. doi: 10.1093/hmg/ddab164. PubMed PMID:34155499 .
- Rahimzadeh, V, Bartlett, G, Knoppers, BM. A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada. BMC Med Ethics. 2021;22 (1):71. doi: 10.1186/s12910-021-00635-1. PubMed PMID:34107925 PubMed Central PMC8191056.