Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 10, Issue 3, Pages 225-238Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264615594767
Keywords
biomedical research ethics; data sharing; data release; data access; research data; research governance; low-income countries; middle-income countries; clinical research; health policy; privacy; systematic review
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Funding
- Wellcome Trust [096527]
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There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders' perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders' perspectives.
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