EOAR SEMINAR, NOVEMBER 2022
TRUSTWORTHY HEALTH DATA GOVERNANCE AND THE SOCIAL LICENSE FOR PRECISION MEDICINE: OUTCOMES FROM MIXED METHODS RESEARCH IN SINGAPORE (2018-2021)
Asst Prof Tamra Lysaght (Centre for Biomedical Ethics, National University of Singapore)
Precision medicine (PM) is an emerging paradigm in healthcare that aims to provide more tailored personalised care for patients from large volumes of linked health data sources. The success of PM will likely rely upon broad societal acceptance of health professionals and researchers from both public and private sectors accessing these data without obtaining specific consent each time. To understand how this acceptance may be achieved, I draw upon the concept of social license to operate (SLO) and discuss the results of mixed methods research conducted in Singapore to articulate foundational ethical values for trustworthy governance of PM programmes.
When: Wednesday, 23rd November 2022, 12-1 PM (ACDT)
Where: Online. Please RSVP to openstemcells@adelaide.edu.au
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Asst Prof Tamra Lysaght is Director of Research and Phase Director of the Health ethics, Law and Professionalism (HeLP) program at the Yong Loo Lin School of Medicine at the Centre for Biomedical Ethics, National University of Singapore. She has expertise in empirical bioethics and interdisciplinary research on the ethics, regulation, and governance of emerging biomedical research and health technologies. Her work focuses on the ethical, regulatory and policy issues surrounding clinical translation of stem cell research and regenerative medicine, and genomics and precision medicine, as well as data intensive research and the use of Artificial Intelligence in healthcare.