"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; trades-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.

Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore

“…It may be difficult to implement recommendation 4 which calls for the oversight committee to consider the consequences of data sharing with respect to fairness and relative financial disadvantage among Singaporeans. Review committees are typically not in a position to accurately predict future downstream consequences of research (Rogers and Ballantyne, 2009). However, those involved in the NPM should be attuned to the distribution of the benefits of PM and work towards achieving affordable healthcare for Singaporeans, addressing inequity and caring for the most vulnerable.…”

“…Prior qualitative research (Lysaght et al, 2020) and a recent survey of Singaporean's views about health data sharing (Lysaght et al, 2021), found that broad versus specific models of consent were less important to respondents than other considerations such as the use and users of the data: similar evaluations may also have informed the jury's focus. The reasons for this de-emphasize on individual consent (for each instance of data sharing) will need to be explored in future research.…”

“…The methods here are reported in line with the CJ Check checklist for reporting community juries (Thomas, 2016). We focused on data sharing with private industry because this issue was identified by key stakeholders in Singapore, and in prior empirical research (Lysaght et al, 2020) as one of the most contentious elements of data sharing for PM programmes. Our citizens' jury asked participants to consider the question: Under what circumstances, if any, is it permissible for a NPM program to share data with private industry for research and development?…”