ArticleJournal of empirical research on human research ethics : JERHRE2015
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.
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 44 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
44 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- 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
- Equitable data sharing in epidemics and pandemics.BMC medical ethics · 2021Pooled 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
- The Emerging Role of Olfactory Receptors: From Genomics to Precision Medicine.Molecular diagnosis & therapy · 2026Review
- 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
- Balancing protection of participants and other stakeholders with openness: African lessons from the MADIVA data sharing and access policy.Global health action · 2025Article
- Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.PLOS digital health · 2024Article
- Community views on the secondary use of general practice data: Findings from a mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 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
- COLLAGENE enables privacy-aware federated and collaborative genomic data analysis.Genome biology · 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
- Equitable Design and Use of Digital Surveillance Technologies During COVID-19: Norms and Concerns.Journal of empirical research on human research ethics : JERHRE · 2022Article
- Data capture and sharing in the COVID-19 pandemic: a cause for concern.The Lancet. Digital health · 2022Review
- Data sharing across osteoarthritis research groups and disciplines: Opportunities and challenges.Osteoarthritis and cartilage open · 2022Article
- Mobile Health: making the leap to research and clinics.NPJ digital medicine · 2021Article
- Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa.BMJ global health · 2021Article
- Society for Immunotherapy of Cancer clinical and biomarkers data sharing resource document: Volume I-conceptual challenges.Journal for immunotherapy of cancer · 2020Article
- Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide.BMC medical research methodology · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders' perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders' perspectives.
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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.