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. 2020 Nov 19;21(1):118.
doi: 10.1186/s12910-020-00561-8.

"Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore

Tamra Lysaght  1 , Angela Ballantyne  2   3 , Vicki Xafis  2 , Serene Ong  2 , Gerald Owen Schaefer  2 , Jeffrey Min Than Ling  4 , Ainsley J Newson  5 , Ing Wei Khor  6 , E Shyong Tai  7   8
Affiliations

"Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore

Tamra Lysaght et al. BMC Med Ethics. .

Abstract

Background: We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research.

Methods: We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis.

Results: Four key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore.

Conclusion: Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

Keywords: Bioethics; Data sharing; Governance; Precision medicine; Public attitudes; Public trust; Qualitative research; Singapore.

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Conflict of interest statement

E Shyong Tai is Director of the Centre for Precision Health at the National University Hospital System, which has received grants from the National Medical Research Council and the National Institutes of Health to conduct studies that involve analysis and sharing of de-identified genetic data. E Shyong Tai is also the co-chair of the Precision Medicine Steering Committee (appointed by the Ministry of Health) with specific responsibility for the Public and Community Trust Workgroup. Owen Schaefer is a member of that Workgroup and Ing Wei Khor is partly funded by the Ministry of Health, Singapore, to support their work. Ainsley Newson is also an Editorial Board member of the BMC Medical Ethics. No other author has any financial competing interests to declare.

Figures

Fig. 1
Fig. 1
Demographic composition of the focus groups by ethnicity (a), age (b) and education (c)
See this image and copyright information in PMC

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