Bartha Maria Knoppers

Distinguished James McGill Professor Emerita

Bartha Maria Knoppers

Bartha Maria Knoppers is Distinguished James McGill Professor Emerita and was the Canada Research Chair in Law and Medicine (2001-2024). Holder of 5 Honorary Degrees, she is the Founding Director of the Centre of Genomics and Policy of the Faculty of Medicine and Health Sciences at McGill University. She is internationally recognized for her outstanding contributions on the legal and ethical aspects of genetics, genomics and emerging biotechnologies as well as the rights of children. She is a member of the Board of Directors of the Global Alliance for Genomics and Health (GA4GH) and until 2024 was the Co-Chair of the Ethics and Governance Working Group for the Human Cell Atlas (HCA) .

All Sessions by Bartha Maria Knoppers

  • Thursday, May 1


  • 11:05  - 12:10
    “Quo Vadis Health Data Sharing?”

    DESCRIPTION OF KEYNOTE

    Open science is premised on the cost-efficient dissemination of data across national and organizational boundaries, for future research use. Its fruition requires broad alignment on the acceptable purposes of data use. However, defining, interpreting, and communicating rights in health data in a compatible manner is a challenge. The rising prominence of data protection law in regulating exchange, relative to bioethics norms, prompts cautiousness and risk-aversion in data exchange. Changes in informal research norms, in private law arrangements enabling data exchange, and in foundational public law are needed. The Pan-Canadian Health Data Charter provides the principles for person and population health data sharing. In addition, GA4GH Ethical Provenance mechanisms strive to develop interoperable tracking mechanisms that enable permissions in biomedical research data to be recorded and communicated across independent research organizations. Quo vadis health data sharing?
    Keynote
    Keynote Q&A




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Bartha Maria Knoppers