IJPDS International Journal of Population Data Science

Health data platforms now play a central role in enabling large‑scale, data‑driven health research. However, they face a persistent challenge: how to enable beneficial research while maintaining the public trust that makes such research possible.

Much attention has focused on technical safeguards such as data de-identification and secure computing environments. Far less is known about whether the public views governance oversight processes themselves as legitimate protections or as unnecessary bureaucratic hurdles.

New research from the Centre for Biomedical Ethics at the National University of Singapore addresses this question. In a study published in the International Journal of Population Data Science (IJPDS), researchers surveyed 453 panel members of the Health Opinion Panel Singapore (HOPS)[1] to examine public attitudes toward health data governance oversight, using Singapore's national TRUST platform as a case study.

Survey respondents were randomly assigned to evaluate two of four hypothetical research scenarios involving a government defence ministry, an overseas private company, an international university, and a domestic education ministry. Participants were asked whether an additional Ministry of Health (MOH) review should be required, despite adding two to five weeks to research timelines.

The results were strikingly consistent. Across all four scenarios, between 80% and 89% of respondents supported additional oversight. Government accountability was the most frequently cited reason, endorsed by 68–76% of supporters depending on the scenario. Rather than viewing the procedural delays as inefficiencies to be minimised, many respondents framed them as a reasonable investment in meaningful accountability.

At the same time, respondents expressed nuanced reasoning about risks. When asked about retaining contact information to notify individuals of potential cancer risk - a direct personal benefit - 69% were willing to accept the associated privacy risks. However, 82% supported restricting overseas researchers to CCTV-monitored rooms for rare disease research, despite the potential impact on international collaboration, citing the elevated re-identification risks associated with small patient populations.

Qualitative responses showed that respondents expected oversight to extend beyond privacy protection to include scientific validity, social justice, and long-term societal impact. Concerns about genetic discrimination, commercial exploitation of national health data, and the labelling of children were prominent. The scenario involving genomic prediction of educational attainment attracted the strongest moral objections.

The authors argue that these findings reflect an underlying expectation for procedural justice, suggesting that social licence for data platforms depends more on transparent, accountable decision‑making than on operational speed.

The study concludes that public attitudes support a risk‑proportionate governance model: strong baseline oversight for all secondary uses of health data, with additional scrutiny when research involves sensitive populations, commercial actors, or elevated re‑identification risks. While the findings arise from Singapore’s high‑trust context, they provide insights relevant to countries seeking to align data governance practices with public values.

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Hui Jin Toh and Marthe Smedinga, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University, Singapore

[1] HOPS is a nationally representative online research panel operated by the Centre for Biomedical Ethics, National University of Singapore (NUS), and is approved under the NUS-Institutional Review Board (IRB) for use in public health and ethics research (IRB ref: LH-18-011).