Resources with YouTube Videos
These resources are curated from the CBmE conferences, seminars and projects. If you want to view the complete playlists, please visit our Youtube channel @ NUS CBmE
Many healthcare professionals in Singapore may still have unanswered questions on the impact of the new section 37 of the Civil Law Act, which codifies the country’s standard of information disclosure and advice.
The annual CENTRES Clinical Ethics Conference, organised by the NUS Centre for Biomedical Ethics, aimed to facilitate participants’ understanding of the effect the new law has on actual practice. It was held online on 23 and 24 March 2022, and saw participants gain an enhanced understanding of the law, to continue practising in the best interests of patients.
Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information shared amongst researchers and health professionals. While studies suggest broad support for data sharing with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances.
Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Our results corroborate with prior international studies, which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. Opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme.
The Conference on Trustworthy Health Data Governance features presentations from 3 invited speakers and panellists on topics related to the development of trustworthy governance for sharing health-related data. Presentations are pre-recorded and made available to participants in advance and broadcast live during an allocated session. The live broadcast is followed by short commentaries from panellists on the presentation and facilitated Q&A session with the audience.
