The Bartha Maria Knoppers Inaugural Lecture 2023
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Prof. Bartha Maria Knoppers and Prof. Eric M. Meslin (Ph.D.) at the Bartha Maria Knoppers Inaugural Lecture 2023 – Photo Credit: Elena Olvera | LulaPhoto
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On October 16th, 2023, in honour of Prof. Bartha Maria Knoppers, the Human Genetics Department together with the Centre of Genomics and Policy were proud to launch "The Bartha Maria Knoppers Inaugural Lecture 2023" which took place at the Charles Martin Amphitheatre, McIntyre Medical Sciences Building, McGill University.
We are thankful to have our first invited speaker Eric M. Meslin (PhD, FRSC, FCAHS) – President and CEO of the Council of Canadian Academies and Visiting Scholar of the CGP – present his talk "Policy as an International Language in Bioethics: What We Can Learn from Genomics." Watch the full talk via the link below:
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The Government of Canada invests $15M in
first-of-its-kind Pan-Canadian Genome Library
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Left to right: Rob Annan (President and CEO of Genome Canada), Ian Stedman (York University), Claude Bhérer (McGill University), Ma’n H. Zawati (McGill University), Yann Joly (McGill University), Canadian Minister of Health Mark Holland, Christopher McMaster (Scientific Director, CIHR), Martha Craigo (McGill Vice-Principal Research and Innovation), Mark Lathrop (Scientific Director, McGill Genome Centre).
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Big news at the Centre of Genomics and Policy! The Honourable Mark Holland (Canadian Minister of Health) has announced a $15 million CIHR investment to create a Pan-Canadian Genome Library, which will facilitate the sharing of genomic data across the country.
This project, led by Prof. Guillaume Bourque (McGill University), will provide researchers and health care professionals with a centralized database that reflects the rich diversity of people living in Canada.
Principal Investigators in this project include Prof. Yann Joly, CGP Director and Associate Prof. Ma’n H. Zawati, CGP Research Director, who will be contributing to data governance, international collaboration and policy. Congratulations to all for this big achievement!
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People-centric health data should be front and centre at first Ministers meeting on health care
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Manitoba Premier Heather Stefanson, left, talks to Quebec Premier Francois Legault, back left, as she chairs a meeting with Canada's premiers in Ottawa on Tuesday. Photo Credit: Sean Kilpatrick / THE CANADIAN PRESS
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The Federal, Provincial, Territorial Health Ministers have endorsed the Health Data Charter 2023. CGP Founding Director, Bartha Maria Knoppers, was part of the Expert Advisory Group of the Pan-Canadian Health Data Strategy convened by the Public Health Agency of Canada which was involved in drafting the Health Data Charter.
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Effective August 2023,
CGP Research Director
Ma'n H. Zawati is now an Associate Professor.
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Sept. 14 – 15, 2023
Eric M. Meslin is President and CEO of the Council of Canadian Academies (CCA). He holds a background in bioethics and philosophy at York University (BA) and Georgetown University (MA, PhD).
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Oct. 23, 2023
Prof. Calvin Ho is an Associate Professor with the Faculty of Law, and Co-Director of the Centre for Medical Ethics, at the University of Hong Kong. His research focuses on global health law and ethics, and the governance of health and biomedical technologies (with focus on health technologies based on Artificial Intelligence and data analytics). He is Co-Chair of the Expert Group on the Ethics of Social Listening and Infodemic Management, as well as a member of the COVID-19 Ethics & Governance Working Group of the World Health Organization (WHO).
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Oct. 9 – Nov. 17, 2023
Momoko Sato is a CGP visiting scholar and Research Associate from RIKEN Center for the Integrative Medical Sciences, the Laboratory for Biomedical Ethics and Co-Design. Her main research interests are ethical, legal, and social issues (ELSI) of genomic research on ethnic minorities. Currently, she is working with Prof. Yann Joly on how to apply GA4GH new policy on diverse datasets to genomic research in Japan. On Nov. 7, Momoko Sato presented her talk "Genomic Research on Indigenous Peoples: The Landscape in Japan" as part of the HaploTalks Special Seminar.
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Nov. 13, 2023
Pascal Borry (Ph.D.) is a Professor at the Centre for Biomedical Ethics and Law at KU Leuven, Belgium. Prof. Borry will be delivering a talk on "Research and Product Improvement Studies in Consumer Mental Health Apps: Interviews with Researchers and App Developers" at the Law Faculty at l'Université de Montréal.
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New CGP Executive Director
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Since August 24, 2023,
Lindsay Dayton is the new Executive Director of the CGP.
Welcome Lindsay!
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Executive Director
LINDSAY DAYTON
Lindsay Dayton is an Academic Associate at the Centre for Genomics and Policy (CGP) at McGill University. She holds a Master’s in molecular biology from Queen’s University. Not new to McGill, she has spent the last couple years as a Grants and Agreements Officer within the Office of Sponsored Research, supporting the McGill academic community to secure research funding. Prior to that she was a Program Manager for the McGill initiative in Computational Medicine in which she was involved in promoting the initiative as well facilitating all the administrative, operational and scientific aspects. In 2016, she made the switch from the private Biotechnology sector to Academia as a Research Administrator.
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Research Assistant
ALYCIA NOË
Alycia Noë is currently a student at McGill University’s Faculty of Law. She holds a Ph.D. in Biology from McGill University and a Bachelor of Arts and Science from McGill University. During her Ph.D., Alycia studied skeletal muscle degeneration in mice and during her undergraduate studies, she worked in a lab researching leukemia. As a result of her time as a scientist, Alycia has a keen interest in intellectual property and healthcare and the advent of AI in scientific research.
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Research Assistant
AMIR HOTTER YISHAY
Amir is currently a BCL/JD candidate at the McGill University Faculty of Law. He holds a Bachelor of Arts with Honours in History and a minor in Political Science from McGill University. While at the Faculty of Law, he has served as a Student Advocate with the Legal Information Clinic at McGill and as a member of the Wallenberg Advocacy Group, working to advocate for political prisoners. He has also interned at the legal clinic of the Native Friendship Centre of Montreal. He is interested in research at the intersection of privacy law, biomedicine, and AI.
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Research Assistant
ANGELICA VOUTSINAS
Angelica Voutsinas is an undergraduate student in the McGill Faculty of Arts, completing her fourth year as an Honours student in Political Science.
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Ph.D. Student
DEREK SO
Derek received his B.Sc from McGill in 2012, majoring in Biology and minoring in English Literature. He then joined the CGP as a Master's student under the supervision of Profs. Yann Joly and Rob Sladek, returning for his PhD in Human Genetics in 2015. Derek's thesis examines the ethical discourse around germline gene editing and the conceptual frameworks used when imagining nonexistent people - particularly the idea of the "modular' human, in which different unitary characteristics are recombined like building blocks. His project is funded by a CIHR Doctoral Award.
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Intern
ANNAËLLE BARREAU
Annaëlle is currently a student at McGill University’s Faculty of Law. She holds a B.A. in psychology and sociology from McGill University. In the past year, she served as Executive Editor at the McGill Journal of Law and Health, while also acting as Co-President of the Black Law Student Association and volunteering as an advocate at the Legal Information Clinic. Her research interests include bioethics and biotechnology, bias in medicine, and human rights law.
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Intern
EMILIE VAILLANCOURT
Emilie holds a Joint Honours B.A. in Psychology & International Development from McGill University and is currently a fourth year BCL/JD student at McGill’s Faculty of Law.
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On August 31, 2023, Prof. Ma'n H. Zawati received this year's Kenneth Morgan Teaching Award from McGill University's Department of Human Genetics for his outstanding contribution in the teaching, supervision and mentorship of students. Congratulations!
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On October 16, 2023, invited guest speaker Eric M. Meslin received the Bartha Maria Knoppers Inaugural Lecture award. Congratulations!
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On October 18, 2023, the research team of PERSPECTIVE I&I was awarded the Prix de cancérologie 2023 - in the category Health Promotion and Prevention from the MSSS of the Government of Québec. A special congratulations to Jacques Simard, Yann Joly (CGP Director), Bartha Maria Knoppers (CGP Founding Director), and all PIs in the PERSPECTIVE I&I team for winning the award!
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Bartha Maria Knoppers
- Nominated to the Canadian Agency for Drugs and Technologies in Health (CADTH) Newborn Screening Advisory Board.
- Nominated to the Comité sur l'éthique et l'intégrité scientifique of the Fonds de recherche du Québec (FRQ).
- Nominated to the ELIXIR – Scientific Advisory Board.
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- On August 9, 2023, Ma'n H. Zawati
led a workshop, "Responsible Development of Artificial Intelligence," at King Hussein Cancer Centre, Amman, Jordan.
- On September 18, 2023, Ma'n H. Zawati
participated in a panel discussion, "Breaking Down Barriers: Exploring the Role of Equity in the Future of Precision Medicine," at the CGEn Café Scientifique, Toronto, Ontario.
- On September 19-22, 2023, Yann Joly, Diya Uberoi and Beatrice Kaiser
participated at the GA4GH 11th Plenary, San Francisco, CA, United States.
- On September 21, 2023, Bartha Maria Knoppers
presented "International Genomic Data Sharing by Health Technologies Industries: Points to Consider," at the GA4GH 11th Plenary, San Francisco, CA, United States.
- On September 22, 2023, Ma'n H. Zawati
presented "Charte pour la médecine régénératrice," at the Ensemble pour la thérapie cellulaire et la médecine régénératrice 2023 Symposium, Héma Québec, ThéCell, Montreal, Quebec.
- On September 27-30, 2023, Ma'n H. Zawati
presented "GenCOUNSEL: Improving Access to Genetic Counselling in Canada," at the Canadian Association of Genetic Counsellors Annual Education Conference, Edmonton, Alberta.
- On September 28, 2023, Bartha Maria Knoppers
presented "Biomedical Research and Policy Making: Does Policy Grow on Trees?," at Gut Cell Atlas Crohn's Disease Consortium Convening, New York, United States.
- On October 1, 2023, Bartha Maria Knoppers
presented "Towards a Code of Conduct," at the Code of Conduct Workshop - Heidelberg University (EMBL), Heidelberg, Germany.
- On October 3, 2023, Yann Joly
presented "Lesson Learned from the COVID-19 Pandemic for Law and Public Health Reform," at the EWHA University Faculty of Law, Seoul, South Korea.
- On October 4, 2023, Bartha Maria Knoppers
presented “Responsible Genomic Data Sharing: Activating the Right to Science,” at the German Human Genome–Phenome Archive Annual Meeting 2023, Heidelberg, Germany.
- On October 5, 2023, Nicole Palmour
presented "Equity Diversity and Inclusion in Genetics: The Intersex Landscape," at the Asian Institute of Bioethics and Health Law, Yonsei University, South Korea.
- On October 6, 2023, Diya Uberoi
presented "Est ce que c’est la discrimination génétique existe au Québec?," at the 23e réunion scientifique annuelle de l’AMGQ, Montreal, Quebec.
- On October 9, 2023, Bartha Maria Knoppers
presented "International Legal Comparative Perspectives on Human Embryo Research," at the Interdisciplinary Scientific Conference (ELSA) – Human Embryos in Medical Research, Berlin, Germany.
- On October 12, 2023, Ma'n H. Zawati
participated in a panel discussion, "Table ronde : Quelles solutions pour le droit à la vie privée à l'ère des tests génétiques en ligne?," at the Colloque international «Des tests qui gênent: Comment mieux protéger le droit à la vie privée à l'ère des tests génétiques en ligne», Université Laval, Québec, Quebec.
- On October 16, 2023, Eric M. Meslin
presented "Policy as an International Language in Bioethics: What We Can Learn from Genomics," at the Bartha Maria Knoppers Inaugural Lecture, McGill University, Montreal, Quebec.
- On October 23, 2023, Calvin Ho
presented "Regulating Generative AI in Health and Health Research," at the HaploTalks Special Seminar, McGill University, Montreal, Quebec.
- On October 31-November 2, 2023, Ma'n H. Zawati
presented "Genomics, Ethics, and Policy: Good Governance to Foster Innovation,” at the 6th GCC eHealth Workforce Development Conference, ZIMAM, Dubai, United Arab Emirates.
- On October 31-November 2, 2023, Ma'n H. Zawati
participated at a panel discussion, "Fire-side Chat: Fast-tracking Genomics skilling of GCC Workforce: Challenges and Opportunities," at the 6th GCC eHealth Workforce Development Conference, ZIMAM, Dubai, United Arab Emirates.
- On November 2, 2023, Bartha Maria Knoppers
presented a poster "International Genomic Data Sharing by Health Technologies Industries: Points to Consider," at the American Society of Human Genetics, Washington, DC, United States.
- On November 2-November 3, 2023, Ma'n H. Zawati
presented “Accès aux données de recherche : une question de réciprocité,” at the Journées d’étude des comités d’éthique de la recherche et de leurs partenaires (JECER), Le Ministère de la Santé et des Services sociaux (MSSS), Québec, Quebec.
- On November 7, 2023, Momoko Sato
presented "Genomic Research on Indigenous Peoples: The Landscape in Japan," at the HaploTalks Special Seminar, McGill University, Quebec.
- On November 7-November 8, 2023, Ma'n H. Zawati
moderated a panel discussion “Meilleures pratiques pour le consentement des patients en génomique clinique et pour la gestion des découvertes fortuites,” at the Rendez-vous Génome Québec 2023, Montreal, Quebec.
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- On November 13, 2023, Pascal Borry
will present "Research and Product Improvement Studies in Consumer Mental Health Apps: Interviews with Researchers and App Developers," at the Faculté de droit at l'Université de Montréal, Montreal, Quebec.
- On November 13, 2023, Ma'n H. Zawati
will present "Crowdsourcing Smartphone Data for Biomedical Research and Algorithm Training: Towards an App Atlas," at the Faculté de droit at l'Université de Montréal, Montreal, Quebec.
- On November 16, 2023, Diya Uberoi
will present "Genetic Discrimination: Towards a global genetic non-discrimination policy?," at the Faculty of Law, McGill University, Montreal, Quebec.
- On November 23, 2023, Bartha Maria Knoppers
will present "Ethico-legal 'futures' in Genomic Medicine," at the DNA Variation Matters Symposium, Rotterdam, Netherlands.
- On December 1, 2023, Yann Joly
will present "Legal, Ethical, and Logistical Issues Associated with Return of Raw Genomic Data," at the University of New South Wales, Sydney, Australia.
- On December 4-6, 2023, Yann Joly
will present "How international comparative law can become a driver for legal reform at the national level: The example of the International Genetic Discrimination Observatory," at the WYNG Hatton Lecture and CMEL Anniversary Conference, Hong Kong University, Hong Kong.
- On December 7, 2023, Bartha Maria Knoppers
will present "How Data Access can lead to better health outcomes," at the Swiss-Canadian Innovation Day, Ottawa.
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- On December 11-12, 2023, Yann Joly and Diya Uberoi
will host at the 4th Annual Scientific Meeting of the GDO Conference, Panama City, Panama.
- On December 11, 2023, Emma Kondrup
will present "The Song Remains the Same? A comparative assessment of Canadian life insurance application forms post GNDA," at the 4th Annual Scientific Meeting of the GDO Conference, Panama City, Panama.
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- Attieh S., Monarque M., Durand A., Ahmed S., Knoppers B.M., Simard J., Loiselle C.G. Perceptions and Usability of PREVENTION: A Breast Cancer Risk Assessment e-Platform. J Pers Med. 2023 May 18;13(5):850. https://doi.org/10.3390/jpm13050850
- Huerne K., Jackson S.S., Lall R., Palmour N., Berner A.M., Dupras C., Joly Y. "Studies in Cancer Epigenetics through a Sex and Gendered Lens: A Comprehensive Scoping Review." 15: 4207 (2023) Cancers. https://doi.org/10.3390/cancers15174207
- Knoppers, B.M., Chase S., Joly Y., Zawati M.H., Thorogood A. “Responsible Processing and Sharing of Genomic Data: Bringing Health Technologies Industries to the Table.” (2023) 23(11), 33-35, The American Journal of Bioethics. https://doi.org/10.1080/15265161.2023.2256254
- Lang M, Zawati M.H. “Online Therapeutic Portals for Sharing Health Research: Comparative Guidance amid Regulatory Uncertainty.” (2023) 6(2) Canadian Journal of Bioethics, 66-75. https://doi.org/10.7202/1101129ar
- Lang, M., McKibbin K., Shabani M., Borry P., Gautrais V., Verbeke K., Zawati M.H. “Crowdsourcing smartphone data for biomedical research: Ethical and legal questions.” (2023) 9 DIGITAL HEALTH. https://doi.org/10.1177/20552076231204428
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Rothstein M.A., Patrinos D., Brothers K.B., Wright Clayton E., Joly Y., Zawati M.H., Andanda P., Arwi T., Castaneda M., Chalmers D., Chen H., Ghaly M., Hatanaka R., Hendriks A.C., Ho C.W.L., Kay J., Krekora-Zajac D., Lee W.B., Mattsson T., Nicolás P., Nnamuchi O., Rial-Sebbag E., Siegal G., Wathuta J.M., Knoppers B.M. "Concordance of International Regulation of Pediatric Health Research," The Journal of Pediatrics, 2023 Elsevier Inc., 1-10. doi.org/10.1016/j.jpeds.2023.113524
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- Bartha Maria Knoppers & Ma’n H. Zawati. “Ethical and Social Issues in Genetics and Genomics.” In Thompson & Thompson Genetics and Genomics in Medicine, edited by Ronald Doron Cohn, Stephen M. Scherer, and Ada Hamosh. (Elsevier, 2024), 425-434.
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Academic Associate
DIMITRI PATRINOS
On September 1, 2023, Dimitri bid farewell to the CGP to focus on his Doctoral studies at the McGill Law Faculty. He will be sorely missed!
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Research Assistant
RUTHERFORD EXIUS
On August 18, 2023, we said goodbye to Rutherford who will be resuming his full-time studies in law at the Université de Montréal. All the best Rutherford!
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