ArticleJournal of empirical research on human research ethics : JERHRE2015
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.
Article in Journal of empirical research on human research ethics : JERHRE, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Barriers impeding research data sharing on chronic disease prevention among the older adults in low-and middle-income countries: a systematic review.Frontiers in public health · 2024Pooled it
- Community engagement processes in low- and middle-income countries health research settings: a systematic review of the literature.BMC health services research · 2023Pooled it
- Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Pooled it
- Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Journal of medical ethics · 2026Article
- Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing.PLOS digital health · 2024Article
- A scoping review of policies to encourage breastfeeding, healthy eating, and physical activity among rural people and places in the United States.BMC public health · 2024Article
- Digital Democracy and Emergency Preparedness: Engaging the Public in Public Health.International journal of public health · 2024Article
- FAIR, ethical, and coordinated data sharing for COVID-19 response: a scoping review and cross-sectional survey of COVID-19 data sharing platforms and registries.The Lancet. Digital health · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders' perspectives.BMJ global health · 2023Article
- "How about me giving blood for the COVID vaccine and not being able to get vaccinated?" A cognitive interview study on understanding of and agreement with broad consent for future use of data and samples in Colombia and Nicaragua.PLOS global public health · 2023Article
- Ethical considerations around volunteer payments in a malaria human infection study in Kenya: an embedded empirical ethics study.BMC medical ethics · 2022Article
- Optimizing Ethics Engagement in Research: Learning from the Ethical Complexities of Studying Opioid Use in Pregnancy.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2022Article
- Model for developing context-sensitive responses to vulnerability in research: managing ethical dilemmas faced by frontline research staff in Kenya.BMJ global health · 2021Article
- African genetic diversity and adaptation inform a precision medicine agenda.Nature reviews. Genetics · 2021Review
- Human OMICs and Computational Biology Research in Africa: Current Challenges and Prospects.Omics : a journal of integrative biology · 2021Article
- Participatory Design and Process Testing to Optimize Utility, Usability, and Acceptability of a Mobile Game for Promoting Evidence-Driven Public Health Decision-Making in Resource-Constrained Settings.Frontiers in digital health · 2021Article
- A qualitative study exploring stakeholder perspectives on the use of biological samples for future unspecified research in Malawi.BMC medical ethics · 2020Review
- Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.Global bioethics = Problemi di bioetica · 2019Article
- Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand.BMC medical ethics · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.