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. 2015 Jul;10(3):290-301.
doi: 10.1177/1556264615592386.

Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders

Spencer G Denny  1 , Blessing Silaigwana  1 , Douglas Wassenaar  2 , Susan Bull  3 , Michael Parker  3
Affiliations

Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders

Spencer G Denny et al. J Empir Res Hum Res Ethics. 2015 Jul.

Abstract

The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa's public research sector, but national guidance and regulation are absent. This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.

Keywords: South Africa; data curation; data sharing; public funded research; public health; research ethics.

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Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Bishop P. (2010). Multi-site case study. In Mills A. J., Durepos G., Wiebe E. (Eds.), Encyclopedia of case study research (pp. 588-591). Thousand Oaks, CA: Sage. doi:10.4135/9781412957397.n219 - DOI
    1. Borgman C. L. (2012). The conundrum of sharing research data. Journal of the American Society for Information Science and Technology, 63, 1059-1078.
    1. Braun V., Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. doi:10.1191/1478088706qp063oa - DOI
    1. Bull S., Cheah P. Y., Denny S., Jao I., Marsh V., Merson L., . . .Parker M. (2015). Best practices for ethical sharing of individual-level research data from low and middle income settings. Journal of Empirical Research on Human Research Ethics, 10(3), 302-313. doi:10.1177/1556264615594606 - DOI - PMC - PubMed
    1. Bull S., Roberts N., Parker M. (2015). Views of ethical best practices in sharing individual-level data from medical and public health research: A systematic scoping review. Journal of Empirical Research on Human Research Ethics, 10(3), 225-238. doi:10.1177/1556264615594767 - DOI - PMC - PubMed

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