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Professor, Centre of Genomics and Policy, McGill University

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

  • 2009–present
    Director, Centre of Genomics and Policy, 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
    Full Professor, Department of Human Genetics, Faculty of Medicine, McGill University
  • 2011–present
    Associate Member, Faculty of Law, McGill University
  • 2013–present
    Associate Member, Biomedical Ethics Unit, Faculty of Medicine, McGill University
  • 2011–present
    Investigator, Faculty of Medicine, Research Institute McGill University Health Centre

Education

  • 1985 
    Université de Paris I, (Sorbonne), France (Comparative Law: Medical Law) , Ph.D., Doctor of Laws (Thesis)
  • 1981 
    McGill University, Montréal, Québec, B.C.L., Civil Law
  • 1981 
    Trinity College, Cambridge University, England, D.L.S., Diploma in Legal Studies (Thesis)
  • 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
    Direct-to-Participant Research, Journal of Law, Medicine and Ethics
  • 2019
    Biotechnologies: Nibbling at the legal “human”, SCIENCE
  • 2019
    Return of Individual Genomic Research Results: Are Laws and Policies Keeping Step?, European Journal of Human Genetics
  • 2018
    Special Issue on Genomic Data Sharing, Human Genetics
  • 2016
    Ethics review for international data-intensive research, SCIENCE
  • 2016
    Editing policy to fit the genome?, SCIENCE
  • 2016
    Population genetic testing for cancer susceptibility: founder mutations to genomes, Nature Reviews, Clinical Oncology
  • 2016
    Harmonizing Privacy Laws to Enable International Biobank Research, Journal of Law, Medicine and Ethics
  • 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)
  • Forum Fellow, World Economic Forum, Davos