title: Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya: Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement.
abstract: 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.
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya.
authors: Irene
authors: I
authors: Jao
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya.
authors: Francis
authors: F
authors: Kombe
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya.
authors: Salim
authors: S
authors: Mwalukore
authors: Oxford University, UK.
authors: Susan
authors: S
authors: Bull
authors: Oxford University, UK.
authors: Michael
authors: M
authors: Parker
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya Oxford University, UK.
authors: Dorcas
authors: D
authors: Kamuya
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya Oxford University, UK.
authors: Sassy
authors: S
authors: Molyneux
authors: KEMRI Wellcome Trust Research Programme, Kilifi, Kenya Oxford University, UK vmarsh@kemri-wellcome.org.
authors: Vicki
authors: V
authors: Marsh
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D035843:Biomedical Research; D003256:Community Participation; D003299:Cooperative Behavior; D003625:Data Collection; D003906:Developing Countries; D005260:Female; D006801:Humans; D007182:Income; D033181:Information Dissemination; D007258:Informed Consent; D007630:Kenya; D008297:Male; D008875:Middle Aged; D057766:Policy; D011634:Public Health; D036301:Qualitative Research; D012108:Research Personnel; D012111:Residence Characteristics; D012941:Social Responsibility
keywords: Africa; Kenya; community consultation; data sharing; ethics; governance; informed consent; trust