\u201cWho is watching the watchdog?\u201d: ethical perspectives of sharing health-related data for precision medicine in Singapore

Tamra Lysaght,Ing Wei Khor,Gerald Owen Schaefer,Vicki Xafis,Serene Ong,E. Shyong Tai,Ainsley J. Newson,Angela Ballantyne,Jeffrey Min Than Ling

doi:10.1186/s12910-020-00561-8

Abstract

BackgroundWe 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.MethodsWe 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.ResultsFour 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.ConclusionMaintenance 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.

Highlights

We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies
PM initiatives typically seek broad consent when participants enrol and do not seek specific consent for every time the data or samples are shared with a new research team
Health data sharing for research under this consent model should operate within the social licence and in line with public expectations

Summary

Introduction

We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Four common themes are reported in this literature: (1) the necessity of appropriate governance structures; (2) that research aims to produce public benefit; (3) the reluctance to allow commercialisation of public data sets, and (4) concerns about privacy and data security. Broad consent involves consent for an unspecified range of future research projects, subject to limited content and/or process restrictions, collected at the point of sample or data donation; it is popular for bio-banking globally [19]. It contrasts with specific consent models where consent is sought from donors each time data are accessed for specific research projects. While specific consent provides data donors with greater individual-level control over who gets access to the data, broad consent models are more common because they reduce the costs of research and burdens on donors being repeatedly re-contacted for consent [20]

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