Journal of Empirical Research on Human Research Ethics | Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research A Systematic Scoping Review

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research A Systematic Scoping Review

Authors

Susan Bull Nia Roberts Michael Parker

.Abstract

"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. 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 Article Notes Declaration of conflict of interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Wellcome Trust Strategic Award 096527, on behalf of the Public Health Research Data Forum. The Forum brings together more than 20 health research funders, who are committed to increasing the availability of health research data in ways that are equitable, ethical, and efficient, and will accelerate improvements in public health (www.wellcome.ac.uk/publichealthdata).

© The Author(s) 2015

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