Bartha Maria Knoppers, PhD (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill University. She was the Chair of the Ethics and Governance Committee of the International Cancer Genome Consortium (2009-2017). She is currently Chair of the Ethics Advisory Panel of WADA (2015- ), and was the Co-Chair of the Regulatory and Ethics Workstream of the Global Alliance for Genomics and Health (2013-2019). In 2015-2016, she was a member of the Drafting Group for the Recommendation of the OECD Council on Health Data Governance and gave the Galton Lecture in November 2017. She holds four Doctorates Honoris Causa and is a Fellow of the American Association for the Advancement of Science (AAAS), the Hastings Center (bioethics), the Canadian Academy Health Sciences (CAHS), and the Royal Society of Canada. She is also an Officer of the Order of Canada and of Quebec, and was awarded the 2019 Henry G. Friesen International Prize in Health Research, the Till and McCulloch Award for science policy (2020) and, was appointed to the International Commission on the Clinical Use of Human Germline Genome Editing.
Experience
2013–present
Associate Member, Biomedical Ethics Unit, Faculty of Medicine, McGill University
2009–present
Full Professor, Department of Human Genetics, Faculty of Medicine, McGill University
2009–present
Associate Member, Department of Anatomy & Cell Biology, Faculty of Medicine, McGill University
2009–present
Director, Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University
2011–present
Investigator, Faculty of Medicine, Research Institute McGill University Health Centre
2011–present
Associate Member, Faculty of Law, McGill University
Education
1985
Université de Paris I, (Sorbonne), France (Comparative Law: Medical Law) , Ph.D., Doctor of Laws (Thesis)
McGill University, Montréal, Québec, B.C.L., Civil Law
1979
Université de Paris I, (Sorbonne), France, D.E.A., Diplôme d’études approfondies, Droit civil
1978
McGill University, Montréal, Québec, LL.B., Common Law
1974
University of Alberta, Edmonton, Alberta, M.A., Comparative Literature (Thesis)
1972
McMaster University, Hamilton, Ontario, B.A., French and English Literature
Publications
2021
Women’s Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada, Journal of Personalized Medicine
2020
How to fix the GDPR’s frustration of global biomedical research, SCIENCE
2020
Genomics: data sharing needs international code of conduct, Nature
2019
Return of Individual Genomic Research Results: Are Laws and Policies Keeping Step?, European Journal of Human Genetics
2019
Direct-to-Participant Research, Journal of Law, Medicine and Ethics
2019
Biotechnologies: Nibbling at the legal “human”, SCIENCE
2018
Special Issue on Genomic Data Sharing, Human Genetics
2016
Ethics review for international data-intensive research, SCIENCE
2016
Harmonizing Privacy Laws to Enable International Biobank Research, Journal of Law, Medicine and Ethics
2016
Population genetic testing for cancer susceptibility: founder mutations to genomes, Nature Reviews, Clinical Oncology
2016
Editing policy to fit the genome?, SCIENCE
2014
Routledge Handbook of Medical Law and Ethics , Routledge
Professional Memberships
Member, Expert Advisory Group, Pan-Canadian Health Data Strategy, Canada
Member, Steering Committee, HostSeq (CanCOGen)
Member, Scientific Advisory Board, Human Pangenome Reference Consortium (HPRC), USA
Member, Strategic Advisory Board, Proactive Mitigation Programme, Luxembourg Centre for Systems Biomedicine, University of Luxembourg
Member, Expert Advisory Group (CIFAR), Society, Technology and Ethics in a Pandemic (STEP)
Member, Expert Advisory Group (CIFAR), Society, Technology and Ethics in a Pandemic (STEP)
Member, External Scientific Panel (ESP), National Human Genome Research Human Genome Reference Program (HGRP)
Member, Canadian COVID-19 Human Host Genome Sequencing Program Steering Committee, CGEn
Member, Scientific and Ethics Advisory Board, Beyond 1M Genome (B1MG), Europe
Member, Committee on Scientific Freedom and Responsibility, American Association for the Advancement of Science (AAAS)
Co-Chair, Governance Ethics Working Group, Human Cell Atlas (HCA)
Member, Ethics and Governance Committee, Canadian Open Neuroscience Platform (CONP)
Member, ESAB, Pioneer Project, EU/IMI
Member, Biobank Advisory Committee, Canadian Health Measures Survey (CHMS)
Member, Accreditation Advisory Panel, Orion Human Research Accreditation (Orion HRA
Scientific Advisor, The Genesis Project Foundation, University of Miami
Director, Board of Governors, Council of Canadian Academies (CCA), Ottawa, Canada
Member, Advisory Board, DNAstack
Member, Advisory Board, Centre for Medical Ethics and Law, University of Hong Kong
Co-Founder, Global Alliance for Genomics and Health
Member, Expert Advisory Group, National DNA Bank, Genoma España
Honorary Member, Canadian College of Medical Geneticists (CCMG)