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

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.

Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

“…Our findings demonstrate that Singaporeans were significantly less willing to share data with private insurance than with pharmaceutical companies. This finding is consistent with prior qualitative studies in Singapore that have reported an openness to sharing with pharmaceutical companies for research that can generate public benefit, but not private insurers [27]. It is also consistent with the relative trust of users in our survey, which measured significantly lower levels for private insurers.…”

“…A recent study in the Republic of Korea also found a strong preference for PM research to be carried out by government agencies [54] suggesting that East and Southeast Asian 'developmental states' [55] may exhibit higher trust in governments, including with respect to data research, than countries in Europe and North America. Singapore, in general, has relatively high levels of trust in government [56,57] and prior qualitative research in Singapore has also reported high trust in government agencies to manage and use PM data [27]. Furthermore, it is possible that Singapore's management of the SARS-CoV-2 pandemic, widely recognized as effective and competent [58,59], boosted Singaporeans' trust in government at the time when our survey was conducted; indeed, according to the Elderman Trust Barometer survey [60], 2020 saw exceptionally high levels of trust in governments globally.…”

“…The survey was developed based on findings from focus groups conducted as part of our mixed methods study [27,29] and an instrument designed for a conjoint analysis of public preferences for health data sharing arrangements in the United States [17]. Conjoint analysis estimates how people make complex decisions by balancing or making a trade-off between competing factors [30] and can be used to quantify numerous metrics simultaneously by presenting a series of side-by-side comparisons of scenarios with different attributes or features that respondents can choose from [31].…”

“…In 2020, the Singapore government launched its ten-year National Precision Medicine (NPM) program [25]. Prior empirical studies have indicated that Singaporeans may be willing to participate in PM without the need for specific consent conditional upon robust data security systems, trustworthy governance, and public benefits [26,27]. However, it is unclear which attributes of data sharing are most important to Singaporeans.…”

Considerations for an integrated population health databank in Africa: lessons from global best practices

“…For example, younger people and females are less likely to participate in consenting to data reuse 55 . Fears of loss of privacy or confidentiality breach, commercialisation of data, misuse and abuse are equally concerning [56][57][58][59] . These concerns are also driven by insufficient public engagement and low public awareness of research governance, participant protection and risk minimisation measures 54 .…”