Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access

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Publication Details

Journal
Health Care Analysis
Published
2026-09-17
DOI
https://doi.org/10.1007/s10728-026-00598-7
Primary Topic
COVID-19 Digital Contact Tracing
Type
article
Field-Weighted Citation Impact
0.00

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article

Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access

Zeinab Al Mokdad, Kazim Mohammed, Ali Msheik, Rubén Peralta et al.
Health Care Analysis
COVID-19 Digital Contact Tracing
article

Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access

Zeinab Al Mokdad, Kazim Mohammed, Ali Msheik, Rubén Peralta, Nasser Alsaad, Ghaya Al-Rumaihi
article en

Abstract

Open data has become central to biomedical research and public health, but health information is uniquely sensitive and difficult to share responsibly. In this narrative review, open data is considered as a spectrum of health-data sharing arrangements, ranging from public aggregate datasets to controlled-access repositories, federated analysis, and synthetic data. This narrative review synthesizes the scientific and societal rationale for greater openness with the ethical, legal, and governance constraints that shape what "open" can realistically mean in healthcare. We examine how data sharing supports reproducibility, machine learning, and more efficient research, while also enabling public health surveillance and learning health systems. Against these benefits, we analyze privacy and re-identification risks, consent challenges in large-scale secondary use, inequities including data colonialism, and tensions introduced by commercialization. We integrate lessons from prominent case examples spanning pandemic data sharing, genomic initiatives, population registries, patient-led rare disease infrastructures, and regional data spaces. Across these domains, experience suggests that durable progress depends less on unrestricted openness than on calibrated access, privacy-preserving architectures, clear accountability, and sustained public engagement. We conclude by proposing a pragmatic ethical orientation for healthcare open data: treat openness as a spectrum of controlled sharing arrangements, embed equity and reciprocity into governance, and institutionalize trust-building measures that can persist beyond emergencies and political cycles.

Health Care Analysis
Lebanese University (LB), Hamad Medical Corporation (QA)
Qatar National Library
Partnerships for the goals
Openalex Percentile: Top 4%
COVID-19 Digital Contact Tracing
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