Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings. (July 2015)

• Record Type: Journal Article
• Authors: Parker, Michael; Bull, Susan
• Other Names: Bull Susan guest-editor.; Parker Michael guest-editor.
• Is Part Of: Journal of empirical research on human research ethics. Volume 10:Number 3(2015)
• Page Start: 217
• Page End: 224
• Publication Date: 2015-07
• Subjects: biomedical research ethics -- data sharing -- data release -- research data -- research governance -- low-income countries; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/1556264615593494
• Languages: English
• ISSNs: 1556-2646

Abstract

It is increasingly recognized that effective and appropriate data sharing requires the development of models of good data-sharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual-level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low-income settings. In this article, we report on qualitative research conducted in five low- and middle-income countries exploring the experiences of key research stakeholders and their views about what constitutes good data-sharing practice.