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◆ Health care analysis : HCA : journal of health philosophy and policy2026-09-17

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

Ali Msheik, Ruben Peralta, Zeinab Al Mokdad, Nasser Alsaad, Kazim Mohammed, Ghaya Al-Rumaihi

原始摘要(英文原文)· Original 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.
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Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access. — 科研速览 Science Skim