Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 10, Issue 3, Pages 264-277Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264615592385
Keywords
Africa; Kenya; data sharing; community consultation; informed consent; governance; trust; ethics
Categories
Funding
- Wellcome Trust [096527, 092654/Z/10/A, WT085418]
- Kenya Medical Research Institute
- Wellcome Trust [092654/Z/10/A] Funding Source: Wellcome Trust
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Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders' attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.
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