Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings. (July 2015)

• Record Type: Journal Article
• Authors: Bull, Susan; Cheah, Phaik Yeong; Denny, Spencer; Jao, Irene; Marsh, Vicki; Merson, Laura; Shah More, Neena; Nhan, Le Nguyen Thanh; Osrin, David; Tangseefa, Decha; Wassenaar, Douglas; Parker, Michael
• 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: 302
• Page End: 313
• Publication Date: 2015-07
• Subjects: biomedical research ethics -- data sharing -- data release -- research data -- research governance -- low-income countries -- middle-income countries -- clinical research -- health policy -- privacy -- trust; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/1556264615594606
• Languages: English
• ISSNs: 1556-2646

Abstract

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders' perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.