Jul 2026· International Journal of Population Data Science· Vol 11· 0 citations
Medicine
TL;DR
This experience shows that context-sensitive governance rooted in CARE and FAIR principles can advance ethical, inclusive, and globally interoperable open science.
Abstract
Researchers in resource-constrained settings continue to face ethical challenges in collecting, using, and sharing data within Trusted Research and Data Environments (TRDEs). While open science promotes transparency, equity, and collaboration, it also heightens privacy concerns amid the rapid spread of artificial intelligence, big data, and machine learning. The African Population and Health Research Center (APHRC) is leading efforts to strengthen ethical data governance in Africa, focusing on how to protect privacy without restricting fair access to data. Growing risks such as data protectionism and restrictive monetization threaten cross-border collaboration and deepen inequalities across low- and middle-income countries (LMICs). APHRC’s approach balances individual rights with collective benefits by treating privacy as both a safeguard and an enabler of open science. Guided by the principle that data is a public good, the Center aligns global frameworks—such as the AU Data Policy Framework, GDPR, and UNESCO’s Open Science Recommendation, with regional instruments and practical innovations. These include the APHRC Central Data Catalogue, a secure repository governed by the Data Sharing Policy; improved metadata systems aligned with FAIR principles; a Data Governance Curriculum on the Virtual Learning Academy; the DASSA Platform supporting federated learning; and a low-code anonymization tool that simplifies privacy practices. Through these initiatives, APHRC demonstrates enhanced data visibility, capacity building, and trust while embedding methods such as k-anonymization, differential privacy and federated learning. This experience shows that context-sensitive governance rooted in CARE and FAIR principles can advance ethical, inclusive, and globally interoperable open science.
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, and proposes a pragmatic ethical orientation for healthcare open data.
A. Msheik, Ruben Peralta, Zeinab Al Mokdad et al.· Health Care Analysis· 0 citations
While privacy regulations such as the GDPR, HIPAA, and CCPA are vital for safeguarding individual rights, the interaction of legal uncertainty, corporate risk management, and restrictive data-sharing practices can, in practice, constrain public-interest research more severely than some commercial uses of data. Academic...
M. Malekzadeh· Big Data & Society· 0 citations
The enactment of the Digital Personal Data Protection Act, 2023 (DPDP Act) marks a watershed moment in India's data protection jurisprudence, codifying the fundamental right to informational privacy recognised in Justice K.S. Puttaswamy (Retd.) v. Union of India (2017). This paper provides a critical, chapter-wise anal...
Satish Kumar Dodiya· International Journal of Cre...· 0 citations
This review argues that Nigeria’s legal and institutional footing has improved through the Nigeria Data Protection Act (NDPA) 2023 and the establishment of the Nigeria Data Protection Commission (NDPC), but risks persist where “paper compliance” substitutes for end-to-end lifecycle implementation.
M. Emmanuel K.· Idosr Journal of Science and...· 0 citations
BACKGROUND
Cross-border medical data sharing has become an important global practice. While it improves the efficiency of healthcare systems, it also raises significant concerns regarding patient privacy and data protection. How can healthcare data be used responsibly to advance medical technology while ensuring that e...
Jin-Shuo Liu, Marleen Eijkholt, Yong-Hui Ma· Health Policy· 0 citations
We use cookies to run the site and, with your consent, for analytics and to show ads.
See our Cookie Policy.