Pamela Andanda, Johannes Machinya, Takudzwa Mutomba
{"title":"Equitable Data Sharing in Collaborative Health Research in Sub-Saharan Africa: A Translational Bioethics Perspective","authors":"Pamela Andanda, Johannes Machinya, Takudzwa Mutomba","doi":"10.1002/eahr.60023","DOIUrl":null,"url":null,"abstract":"<div>\n \n <p>Clinical research is essential for establishing the safety, efficacy, and contextualized effectiveness of medical products. Data from multiple sources such as representative target population studies and health and demographic data obtained through health surveillance systems are required for designing clinical research protocols and for recruitment of participants. In this essay, we review barriers from a complex interplay of ethical, legal, and practical challenges in data governance that hamper sharing health data from these sources in Sub-Saharan Africa. We suggest that a translational bioethics approach offers a valuable framework for addressing these challenges to bridge the gap between theory and practical application of ethical principles in data governance.</p>\n </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 3","pages":"40-45"},"PeriodicalIF":0.0000,"publicationDate":"2025-05-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60023","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Ethics & human research","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/eahr.60023","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Social Sciences","Score":null,"Total":0}
引用次数: 0
Abstract
Clinical research is essential for establishing the safety, efficacy, and contextualized effectiveness of medical products. Data from multiple sources such as representative target population studies and health and demographic data obtained through health surveillance systems are required for designing clinical research protocols and for recruitment of participants. In this essay, we review barriers from a complex interplay of ethical, legal, and practical challenges in data governance that hamper sharing health data from these sources in Sub-Saharan Africa. We suggest that a translational bioethics approach offers a valuable framework for addressing these challenges to bridge the gap between theory and practical application of ethical principles in data governance.