Trustworthy Governance of Data Sharing for Precision Medicine

Thursday, Apr 29, 2021
9:00 pm - 10:00 pm
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Tamra Lysaght
PhD Centre for Biomedical Ethics
National University of Singapore

Precision Medicine (PM) promises to improve clinical care by tailoring disease treatment and prevention
to individual patient factors, such as genetics, lifestyle, and environment. The success of PM is contingent upon effective and trustworthy governance, which is essential in maintaining the social licence for data sharing, especially in the absence of specific consent from data subjects. Dr Lysaght will report the key findings from empirical bioethics research aimed at identifying the boundaries of the social license needed to share data under broad consent for PM. The combined results suggest that Singaporeans value the potential social benefits of PM and may be willing to participate with broad consent, but are concerned about the misuse and exploitation of data shared, especially with private industry. Key provisions necessary for the trustworthy governance systems for PM will be recommended.

Supported by the Fogarty International Center of the United States, National Institutes of Health (Grant R25TW010891) in collaboration with the Berman Institute of Bioethics, Johns Hopkins University.