ArticleEnvironmental health : a global access science source2011
Data sharing: not as simple as it seems.
Article in Environmental health : a global access science source, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis 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
27 citing papers in PubMed, 1 synthesis or guideline pooled 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
- 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
- Moving Toward Findable, Accessible, Interoperable, Reusable Practices in Epidemiologic Research.American journal of epidemiology · 2023Article
- "Ethics When You Least Expect It": A Modular Approach to Short Course Data Ethics Instruction.Science and engineering ethics · 2020Article
- Availability of Research Data in High-Impact Addiction Journals with Data Sharing Policies.Science and engineering ethics · 2020Article
- Learning from electronic health records across multiple sites: A communication-efficient and privacy-preserving distributed algorithm.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- Biomedical Data Sharing Among Researchers: A Study from Jordan.Journal of multidisciplinary healthcare · 2020Article
- Data Access and Usage Practices Across a Cohort of Researchers at a Large Tertiary Pediatric Hospital: Qualitative Survey Study.JMIR medical informatics · 2018Article
- Ethical sharing of health data in online platforms - which values should be considered?Life sciences, society and policy · 2017Article
- Big and disparate data: considerations for pediatric consortia.Current opinion in pediatrics · 2017Review
- 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.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.Journal of empirical research on human research ethics : JERHRE · 2015Article
- 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.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Article
- What drives academic data sharing?PloS one · 2015Article
- A human rights approach to an international code of conduct for genomic and clinical data sharing.Human genetics · 2014Article
- Data sharing in large research consortia: experiences and recommendations from ENGAGE.European journal of human genetics : EJHG · 2014Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In recent years there has been a major change on the part of funders, particularly in North America, so that data sharing is now considered to be the norm rather than the exception. We believe that data sharing is a good idea. However, we also believe that it is inappropriate to prescribe exactly when or how researchers should preserve and share data, since these issues are highly specific to each study, the nature of the data collected, who is requesting it, and what they intend to do with it. The level of ethical concern will vary according to the nature of the information, and the way in which it is collected - analyses of anonymised hospital admission records may carry a quite different ethical burden than analyses of potentially identifiable health information collected directly from the study participants. It is striking that most discussions about data sharing focus almost exclusively on issues of ownership (by the researchers or the funders) and efficiency (on the part of the funders). There is usually little discussion of the ethical issues involved in data sharing, and its implications for the study participants. Obtaining prior informed consent from the participants does not solve this problem, unless the informed consent process makes it completely clear what is being proposed, in which case most study participants would not agree. Thus, the undoubted benefits of data sharing does not remove the obligations and responsibilities that the original investigators hold for the people they invited to participate in the study.
Indexed as
Identifiers
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.