Research Stakeholders' Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations

There is increasing recognition of the importance of sharing research data within the international scientific community, but also of the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research. Public involvemen...

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Bibliographic Details
Published in:PloS one 2015-09, Vol.10 (9), p.e0135545-e0135545
Main Authors: Jao, Irene, Kombe, Francis, Mwalukore, Salim, Bull, Susan, Parker, Michael, Kamuya, Dorcas, Molyneux, Sassy, Marsh, Vicki
Format: Article
Language:English
Subjects:
Adult
Aged
Aged, 80 and over
Autonomy
Bioethics
Biomedical Research - ethics
Buildings
Communication
Communities
Consultation
Data processing
Data retrieval
Demographic aspects
Ethics
Humans
Income
Information Dissemination - ethics
Information management
Information sharing
International Cooperation
Kenya
Knowledge transfer
Medical ethics
Medical research
Medicine
Middle Aged
Partnerships
Public health
Public Health - ethics
Public involvement
Research ethics
Research Personnel - ethics
Researchers
Social Stigma
Trust
Trustworthiness
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Summary:There is increasing recognition of the importance of sharing research data within the international scientific community, but also of the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research. Public involvement is essential to building locally responsive research policies, including on data sharing, but little research has involved stakeholders from low-to-middle income countries. Between January and June 2014, a qualitative study was conducted in Kenya involving sixty stakeholders with varying experiences of research in a deliberative process to explore views on benefits and challenges in research data sharing. In-depth interviews and extended small group discussions based on information sharing and facilitated debate were used to collect data. Data were analysed using Framework Analysis, and charting flow and dynamics in debates. The findings highlight both the opportunities and challenges of communicating about this complex and relatively novel topic for many stakeholders. For more and less research-experienced stakeholders, ethical research data sharing is likely to rest on the development and implementation of appropriate trust-building processes, linked to local perceptions of benefits and challenges. The central nature of trust is underpinned by uncertainties around who might request what data, for what purpose and when. Key benefits perceived in this consultation were concerned with the promotion of public health through science, with legitimate beneficiaries defined differently by different groups. Important challenges were risks to the interests of study participants, communities and originating researchers through stigmatisation, loss of privacy, impacting autonomy and unfair competition, including through forms of intentional and unintentional 'misuse' of data. Risks were also seen for science. Given background structural inequities in much international research, building trust in this low-to-middle income setting includes ensuring that the interests of study participants, primary communities and originating researchers will be promoted as far as possible, as well as protected. Important ways of building trust in data sharing include involving the public in policy development and implementation, promoting scientific collaborations around data sharing and building close partnerships between researchers and government health authorities to provide checks a
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0135545