Ethical Uses of Genetic Data: A Conversation with Dr. Bartha Knoppers

Dr. Bartha Maria Knoppers is a world-renowned expert and pioneer in the field of health law and bioethics, with particular focus on genomics. Her groundbreaking work has fundamentally changed our understanding of the complex intersection between science law, technology and ethics. She currently serves as the Director of the Centre for Genomics and Policy at McGill University, collaborating with international organizations, governments and policymakers to help shape ethical guidelines that safeguard human rights while supporting the health and well-being of individuals and communities.

• Genetic exceptionalism [03:46]
• Use of genetic information in healthcare [05:50]
• Genome sequencing and predicting health outcomes [6:23]
• Parental consent for newborn screening [10:45]
• Privacy considerations for genomic sequencing for health research [12:39]
• Biobanks and the use of data for health research [14:45]
• Governance, transparency, and accountability in health research [18:40]
• Considerations for data sharing among academic and commercial researchers [20:41]
• P3G public population project in Genomics and Society [24:05]
• The Global Alliance for Genomics and Health (Canada) [26:58]
• Canadian Health Data Strategy [29:11]
• Canada Health Data Charter [33:10]
• Advice on promoting trust in digital health [35:07]

Resources:

• Centre for Genomics and Policy (CGP)
• McGill Genome Centre
• The Public Population Project in Genomics (P3G)
• The Global Alliance for Genomics and Health (GA4GH) meeting (September 2023)
• Digital Health under PHIPA: Selected Overview
• IPC Strategic Priorities 2021-2025
• Trust in Digital Health(IPC resources)

Info Matters is a podcast about people, privacy, and access to information hosted by Patricia Kosseim, Information and Privacy Commissioner of Ontario. We dive into conversations with people from all walks of life and hear stories about the access and privacy issues that matter most to them.

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The information, opinions, and recommendations presented in this podcast are for general information only. It should not be relied upon as a substitute for legal advice. Unless specifically stated otherwise, the IPC does not endorse, approve, recommend, or certify any information, product, process, service, or organization presented or mentioned in this podcast, and information from this podcast should not be used or reproduced in any way to imply such approval or endorsement. None of the information, opinions and recommendations presented in this podcast bind the IPC’s Tribunal that may be called upon to independently investigate and decide upon an individual complaint or appeal based on the specific facts and unique circumstances of a given case.