ArticleJournal of empirical research on human research ethics : JERHRE2015
Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.
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 29 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
29 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
- A systematic literature review of researchers' and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data.Systematic reviews · 2020Pooled 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
- 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
- Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Journal of medical ethics · 2026Article
- Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.PLOS digital health · 2024Article
- 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
- African researchers do not think differently about Open Data.Frontiers in research metrics and analytics · 2022Article
- Using health information for community activism: A case study of the movement for change and social justice in South Africa.PLOS global public health · 2022Article
- Article
- Biomarkers for Progression in Diabetic Retinopathy: Expanding Personalized Medicine through Integration of AI with Electronic Health Records.Seminars in ophthalmology · 2021Article
- The views, perspectives, and experiences of academic researchers with data sharing and reuse: A meta-synthesis.PloS one · 2020Article
- Biomedical Data Sharing Among Researchers: A Study from Jordan.Journal of multidisciplinary healthcare · 2020Article
- Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.Journal of empirical research on human research ethics : JERHRE · 2019Article
- Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.BMC medical ethics · 2019Article
- Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand.BMC medical ethics · 2018Article
- Sharing public health data and information across borders: lessons from Southeast Asia.Globalization and health · 2018Article
- Public availability of research data in dentistry journals indexed in Journal Citation Reports.Clinical oral investigations · 2018Article
- Sharing raw data from clinical trials: what progress since we first asked "Whose data set is it anyway?".Trials · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa's public research sector, but national guidance and regulation are absent. This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.
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What OpenQuestion holds
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.