Regulatory Change and the Canadian Health Data Commons

About this Session:
Health-sector organizations use tiered data governance models to steward data, ensuring its responsible secondary use. Collaboration between institutional bioethics professionals and researchers enables appropriate access controls to be applied to data. Such bespoke safeguards are proportionate to the sensitivity of data and the risks that its use creates. In this Health Data for All of Us session, Alexander Bernier explores the Canadian regulatory mechanisms that operationalize tiered data governance today. He provides critical commentary on the contemporary shift away from reliance on bioethics institutions to establish a practicable balance of rights and responsibilities in data toward the heightened use of data protection institutions to regulate biomedical data use. New regulatory developments are assessed both in general and relative to health-sector artificial intelligence development.

About the Speaker:
Alexander Bernier is a Montreal-based lawyer completing his SJD at the University of Toronto Faculty of Law. He performs research at the intersection of bioethics, health data governance and AI. alignment. Alexander also helps Canadian and international research consortia implement data governance practices, including the Canadian Open Neuroscience Platform, the NIH Bridge2AI Voice Consortium and the Canadian Consortium for Neurodegeneration and Aging. He provides practical guidance on applied data governance challenges across numerous distinct areas in the health sciences, including genomics, neuroscience, population health, and oncology. He presently co-chairs the AI and Data Visitation Working Group of the Research Data Alliance, which attempts to develop pragmatic technical and public policy solutions to challenges in implementing federated data analysis.

About this Event:
Health Data for All of Us: A Public Dialogue on AI in Health was HDRN Canada's third annual hybrid public forum. It brought together researchers, community groups, members of the public, and policymakers to discuss topics related to the intersection of artificial intelligence and health data access and use in Canada. The forum offered engaging dialogue and engagement around the emerging ethical, equity, and privacy challenges of AI.

Land Acknowledgement:
Health Data for All of Us: A Public Dialogue on AI in Health took place in Ottawa, on the un-ceded, unsurrendered Anishinabe Algonquin territory. The peoples of the Anishinabe Algonquin Nation are the customary keepers and defenders of the Ottawa River Watershed and its tributaries. They have lived on this territory for millennia, and their culture and presence have nurtured and continue to nurture this land.