ArticleJournal of empirical research on human research ethics : JERHRE2015
Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand.
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 36 papers, 4 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
36 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review.PloS one · 2026Pooled it
- Challenges and Opportunities for Data Sharing Related to Artificial Intelligence Tools in Health Care in Low- and Middle-Income Countries: Systematic Review and Case Study From Thailand.Journal of medical Internet research · 2025Pooled 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
- 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
- Fragmented care pathways for non-communicable disease in Cambodia: implications for people-centred and integrated health systems.BMJ global health · 2026Article
- Identifying the motivators, benefits and barriers to sharing participant-level data and samples: results from an international online survey of acute febrile illness cohort teams.BMC medical ethics · 2026Article
- How to conduct an individual participant data meta-analysis in response to an emerging pathogen: Lessons learned from Zika and COVID-19.Research synthesis methods · 2026Review
- Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda.BMC medical ethics · 2025Article
- Establishing best practices guidelines for collaborative research in global surgery: developing a Delphi survey.Journal of global health · 2025Article
- Call for a fairer approach to authorship in publishing biomedical research.Communications medicine · 2025Review
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa.PloS one · 2024Article
- Systematic reviewers' perspectives on sharing review data, analytic code, and other materials: A survey.Cochrane evidence synthesis and methods · 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 do we measure the costs, benefits, and harms of sharing data from biomedical studies? A protocol for a scoping review.Open research Europe · 2023Article
- Care to share? Experimental evidence on code sharing behavior in the social sciences.PloS one · 2023Observational
- "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
- Maximizing the utility of public data.Frontiers in genetics · 2023Article
- Open Science Within Pediatric Medical and Mental Health Systems: Practical Considerations for Behavioral Health Researchers.Frontiers in psychology · 2022Article
- Status, use and impact of sharing individual participant data from clinical trials: a scoping review.BMJ open · 2021Article
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
The Thailand Major Overseas Programme coordinates large multi-center studies in tropical medicine and generates vast amounts of data. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted 15 interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive. Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance.
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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.