Bartha Maria Knoppers | |
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Born | |
Alma mater | McMaster University University of Cambridge University of Alberta McGill University University of Paris 1 Pantheon-Sorbonne |
Employer(s) | Université de Montréal McGill University |
Bartha Maria Knoppers, OC OQ (born May 26, 1951) is a Canadian law Professor and an expert on the ethical aspects of genetics, genomics and biotechnology.
Born in Hilversum, Netherlands, she received a Bachelor of Arts (French and English Literature) from McMaster University (1972), a Master of Arts degree in comparative literature from the University of Alberta (1974), Bachelor of Common Law (1978) and Civil Law (1981) degrees from McGill University, where she was selected as an Executive Editor for the McGill Law Journal , [1] a Diploma of Advanced Studies from the University of Paris 1 Pantheon-Sorbonne (1979), a Diploma of Legal Studies from University of Cambridge (1981), and a Doctorate of Laws from the University of Paris 1 Pantheon-Sorbonne [2] (1985). In addition, she became a member of the Quebec Bar (1985).
She was a professor at the Faculty of Law, Université de Montréal (1985-2009), a Full Professor at the Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University (2009-2024), [2] and is an Associate Member of the Faculty of Law (2011) and the Biomedical Ethics Unit (2013). She retired in 2024 and was named Distinguished James McGill Professor Emerita. [3] She is also the Founding Director of the Centre of Genomics and Policy, McGill University (2009-2024), and the Founder and Chair of Public Population Project in Genomics (P3G) Consortium and CARTaGENE, Quebec (2007-2019).
Prof. Knoppers held the Canada Research Chair in Law and Medicine from 2001-2024. [4] This involved analyzing and developing national and international policies, laws and guidelines in the field of genomics. She is Co-Founder and a Board Member of the Board of Directors of the Global Alliance for Genomics and Health (GA4GH) (2022-) and Co-Chair of the Governance Ethics Working Group for the Human Cell Atlas (HCA) (2018-2024). Previously, Prof. Knoppers was the Chair of the Ethics and Policy Committee of the International Cancer Genome Consortium (ICGC) (2009-2017), the Chair of the International Ethics Committee of the Human Genome Organisation (HUGO) [5] (2012-2016), and the Chair of the Ethics Working Group of the World Anti-Doping Agency (WADA) [6] (2016-2021). She was also a member of the Drafting Group for the Recommendation of the OECD Council on Health and Data Governance (2015-2016). During the COVID-19 pandemic, she participated as a member of the COVID-19 Vaccine Task Force convened by the National Research Council Canada and Innovation, Science and Economic Development Canada. [7] In 2020, she was appointed to the International Commission on the Clinical Use of Human Germline Genome Editing. [8]
Prof. Knoppers has published over 565 peer-reviewed articles, over 117 book chapters and 38 books. She is the lead author of the Stem Cell Charter (2010) and co-edited the Routledge Handbook of Medical Law and Ethics (2014). Her work has been featured in various peer-reviewed academic journals, such as SCIENCE, Nature, BMJ Open, Frontiers in Genetics, to name a few.
In 2002, Prof. Knoppers was made an Officer of the Order of Canada [9] in recognition for being "a world authority on the ethical aspects of genetics, genomics and biotechnology". She was also made an Officer of the National Order of Quebec [10] (2012), and a Commander of the Order of Montréal (2016). She holds five Doctorate Honoris Causa: Doctor of Laws from the University of Waterloo (2001); [11] Doctor of Medicine from the University of Paris V – René Descartes (2002); Doctor of Laws from McMaster University (2007); Doctor of Laws from the University of Alberta (2008); and Doctor of Laws from the University of British Columbia (2024). [12]
She was elected as a Fellow of the American Association for the Advancement of Science (2002), and is a Fellow of the Hastings Center (2000-2002), an independent bioethics research institution. In addition, Prof. Knoppers is a member of the AAAS' Committee on Scientific Freedom and Responsibility since 2019, and is a Fellow of the Canadian Academy of Health Sciences (CAHS) (2005), the Royal Society of Canada’s Academy of Social Sciences (2017), and the Galton Institute (2017). She is a Senior Fellow for the PHG Foundation, University of Cambridge, UK (2019), and gave the Baron de Lancey Lecture in 2022. [13]
Prof. Knoppers has received numerous awards for her academic achievements. Her most recent recognitions include the Henry G. Friesen International Prize in Health Research (2019), the Till and McCulloch Award for international policy (2020), and the Canadian Bioethics Society Lifetime Achievement award (2021) [14] in recognition of her significant contributions to healthcare ethics through her scholarship and leadership.
The Faculty of Law is one of the professional graduate schools of McGill University in Montreal, Quebec, Canada. It is the oldest law school in Canada. 180 candidates are admitted for any given academic year. For the year 2021 class, the acceptance rate was 10%.
Marco A. Marra is a Distinguished Scientist and Director of Canada's Michael Smith Genome Sciences Centre at the BC Cancer Research Centre and Professor of Medical Genetics at the University of British Columbia (UBC). He also serves as UBC Canada Research Chair in Genome Science for the Canadian Institutes of Health Research and is an inductee in the Canadian Medical Hall of Fame. Marra has been instrumental in bringing genome science to Canada by demonstrating the pivotal role that genomics can play in human health and disease research.
The Human Genome Organisation (HUGO) is a non-profit organization founded in 1988. HUGO represents an international coordinating scientific body in response to initiatives such as the Human Genome Project. HUGO has four active committees, including the HUGO Gene Nomenclature Committee (HGNC), and the HUGO Committee on Ethics, Law and Society (CELS).
The Temerty Faculty of Medicine is the medical school of the University of Toronto. Founded in 1843, the faculty is based in Downtown Toronto and is one of Canada's oldest institutions of medical studies, being known for the discovery of insulin, stem cells and the site of the first single and double lung transplants in the world.
Charles Robert Scriver was a Canadian pediatrician and biochemical geneticist. His work focused on inborn errors of metabolism and led in establishing a Canada-wide newborn metabolic screening program.
Thomas James Hudson, O.C., is a Canadian genome scientist noted for his leading role in the generation of physical maps of the human and mouse genomes and also his role in the International HapMap Project whose goal is to develop a haplotype map of the human genome.
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Expenditures by Canadian universities on scientific research and development accounted for about 40% of all spending on scientific research and development in Canada in 2006.
The Centre of Genomics and Policy is affiliated with McGill University and the Genome Innovation Centre Canada. The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics research at the international, national, and provincial levels. Its website provides policy makers and the public access to policy statements concerning genetic research.
P3G (Public Population Project in Genomicsand Society) is a not-for-profit international consortium dedicated to facilitating collaboration between researchers and biobanks working in the area of human population genomics. P3G is member-based and composed of experts from the different disciplines in the areas of and related to genomics, including epidemiology, law, ethics, technology, biomolecular science, etc. P3G and its members are committed to a philosophy of information sharing with the goal of supporting researchers working in areas that will improve the health of people around the world.
David Rosenblatt is a Canadian medical geneticist, pediatrician, and professor in the departments of Human Genetics, Medicine, Pediatrics, and Biology at McGill University in Montreal, Quebec, where he was the chairman of the Department of Human Genetics from 2001 to 2013. He is known for his contributions to the field of inborn errors of folate and vitamin B12 metabolism.
Robert C. Green is an American medical geneticist, physician, and public health researcher. He directs the Genomes2People Research Program in translational genomics and health outcomes in the Division of Genetics at Brigham and Women's Hospital and the Broad Institute, and is Director of the Preventive Genomics Clinic at Brigham and Women's Hospital. Research led by Green includes clinical and research aspects of genomic and precision medicine, including the development and disclosure of Alzheimer's disease risk estimates and one of the first prospective studies of direct-to-consumer genetic testing services. He has studied the implementation of medical sequencing in healthy adults, newborns, and active duty military personnel. As of 2020, he is leading the first research collaboration to explore return of genomic results and better understand penetrance in a population-based cohort of underrepresented minorities. He has led the Preventive Genomics Clinic at Brigham and Women's Hospital since its creation in 2019.
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Philip Awadalla is a professor of medical and population genetics at the Ontario Institute for Cancer Research, and the Department of Molecular Genetics, Faculty of Medicine, University of Toronto. He is the National Scientific Director of the Canadian Partnership for Tomorrow's Health (CanPath), formerly the Canadian Partnership for Tomorrow Project (CPTP), and executive director of the Ontario Health Study. He is also the Executive Scientific Director of the Genome Canada Genome Technology Platform, the Canadian Data Integration Centre. Professor Awadalla was the Executive Scientific Director of the CARTaGENE biobank, a regional cohort member of the CPTP, from 2009 to 2015, and is currently a scientific advisor for this and other scientific and industry platforms. At the OICR, he is Director of Computational Biology.
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Christine Patch is a nurse and genetic counsellor. She is a Principal Staff Scientist in Genomic Counselling in the Society and Ethics Research group, part of Wellcome Connecting Science, based on the Wellcome Genome Campus. She is also the Clinical Lead for Genetic Counselling at Genomics England, and a former President of the European Society of Human Genetics.
Vardit Ravitsky Israeli-Canadian is a bioethicist, researcher, and author. She is president and CEO of The Hastings Center, a full professor at the University of Montreal, and a senior lecturer on Global Health and Social Medicine at Harvard Medical School. She is immediate-past president and current vice-president of the International Association of Bioethics, and the director of Ethics and Health at the Center for Research on Ethics. She is a Fellow of the Pierre Elliott Trudeau Foundation, where she chaired the COVID-19 Impact Committee. She is also Fellow of The Hastings Center and of the Canadian Academy of Health Sciences.
Celia Margaret Theodora Greenwood is a Canadian biostatistician specializing in statistical genetics. She is a James McGill Professor of Oncology at McGill University.
Wylie Burke is a Professor Emerita and former Chair of the Department of Bioethics and Humanities at the University of Washington and a founding co-director of the Northwest-Alaska Pharmacogenomics Research Network, which partners with underserved populations in the Pacific Northwest and Alaska.
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