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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.

Original publication

DOI

10.1177/1556264615592385

Type

Journal article

Journal

J Empir Res Hum Res Ethics

Publication Date

07/2015

Volume

10

Pages

264 - 277

Keywords

Africa, Kenya, community consultation, data sharing, ethics, governance, informed consent, trust, Adult, Aged, Aged, 80 and over, Attitude, Biomedical Research, Community Participation, Cooperative Behavior, Data Collection, Developing Countries, Female, Humans, Income, Information Dissemination, Informed Consent, Kenya, Male, Middle Aged, Policy, Public Health, Qualitative Research, Research Personnel, Residence Characteristics, Social Responsibility