Dr Hui Yun Chan1, Ms Hui Jin Toh1
1Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
Scalable mobile digital health technologies using big data, artificial intelligence and robotics have the potential to shift focus away from acute hospital settings towards health promotion and community care. Development of these technologies requires the collection, storage, curation and use of data that may be highly personal and potentially sensitive. Researchers developing digital technologies within international collaborations may also need to transfer parts or all of these datasets across jurisdictional borders to partner institutions for analysis. However, the legal and ethical provisions that would facilitate the cross-border transfer of potentially sensitive datasets are unclear. While some legislation exists for the protection of personally identifiable data, they generally do not apply to de-identified datasets that may contain sensitive information about cohorts of research participants.
This study aimed to develop ethical guidance for research being conducted at the Singapore-ETH Centre Future Health Technologies (FHT) programme. This programme is a collaboration between ETH-Zurich and the Singapore National Research Foundation that aims to develop scalable mobile digital health technologies with local healthcare institutions. The transfer of data between Singapore and Switzerland must not only comply with the relevant data protection laws and regulations in both countries but should also align with cultural norms and expectations. To inform the development of this guidance, we engaged stakeholders in a mixed methods modified Policy Delphi designed to deliberate on questions about data sensitivity and acceptable cross-border transfer. We report on the outcomes of this process and their integration into principled ethical frameworks for health data governance.
Biography:
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