Data Privacy, a key pillar in realizing ethical Open Science in resource constrained settings: Balancing Privacy, Protection and Accessibility.

IF 2.2 Q3 HEALTH CARE SCIENCES & SERVICES
International Journal of Population Data Science Pub Date : 2026-07-06 eCollection Date: 2026-01-01 DOI:10.23889/ijpds.v11i5.3465
Bonface Ingumba
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引用次数: 0

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.

数据隐私,在资源受限环境下实现伦理开放科学的关键支柱:平衡隐私、保护和可及性。
资源受限环境下的研究人员在可信研究和数据环境(TRDEs)中收集、使用和共享数据时继续面临伦理挑战。虽然开放科学促进了透明度、公平和协作,但在人工智能、大数据和机器学习的快速传播中,它也加剧了对隐私的担忧。非洲人口与健康研究中心(APHRC)正在领导加强非洲数据伦理治理的努力,重点关注如何在不限制公平获取数据的情况下保护隐私。数据保护主义和限制性货币化等日益严重的风险威胁着跨境合作,并加深了中低收入国家(LMICs)之间的不平等。APHRC的方法平衡了个人权利和集体利益,将隐私视为开放科学的保障和推动者。在数据是公共产品这一原则的指导下,该中心将非盟数据政策框架、GDPR和教科文组织开放科学建议等全球框架与区域工具和实际创新相结合。其中包括APHRC中央数据目录,这是一个由数据共享政策管理的安全存储库;改进符合FAIR原则的元数据系统;基于虚拟学习学院的数据治理课程支持联合学习的DASSA平台;还有一个低代码匿名化工具,简化了隐私操作。通过这些举措,APHRC展示了增强的数据可见性、能力建设和信任,同时嵌入k-匿名化、差异隐私和联邦学习等方法。这一经验表明,基于CARE和FAIR原则的对环境敏感的治理可以促进合乎道德、包容和全球可互操作的开放科学。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
2.50
自引率
0.00%
发文量
386
审稿时长
20 weeks
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