ArticleEthics & human research2020
Research Participant Views regarding Qualitative Data Sharing.
Article in Ethics & human research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
What it found
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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.
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Who cites it
19 citing papers in PubMed.
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- With qualitative research, the risks of data sharing can outweigh the rewards.Proceedings of the National Academy of Sciences of the United States of America · 2026Article
- Renal Clinical Study Participants Support Data Sharing and Use of Artificial Intelligence.Kidney international reports · 2026Article
- Perspectives on Health Data Sharing Among Patients With Somatic and Mental Health Diseases: Focus Group Study.Journal of medical Internet research · 2026Article
- Good, bad, different or something else? A scoping review of the convictions, conventions and developments around quality in qualitative research.Royal Society open science · 2025Article
- Dataset for a qualitative interview study exploring the barriers and facilitators to using and recommending aspirin for cancer prevention.Health psychology and behavioral medicine · 2025Article
- Ethical implications of neurotechnology in industry-academia partnerships: Insights from patient and research participant interviews.PloS one · 2025Article
- A dataset without a code book: ethnography and open science.Frontiers in sociology · 2024Review
- AccessShare: Co-designing Data Access and Sharing with Blind People.ASSETS. Annual ACM Conference on Assistive Technologies · 2024Article
- Exchanging words: Engaging the challenges of sharing qualitative research data.Proceedings of the National Academy of Sciences of the United States of America · 2023Article
- Potentially Identifying Variables Reported in 100 Qualitative Health Research Articles: Implications for Data Sharing and Secondary Analysis.Forum, qualitative social research · 2023Article
- Patient perspectives on data sharing regarding implementing and using artificial intelligence in general practice - a qualitative study.BMC health services research · 2023Article
- Contributing to Accessibility Datasets: Reflections on Sharing Study Data by Blind People.Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference · 2023Article
- Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.BMC medical ethics · 2022Article
- Qualitative Data Sharing: Participant Understanding, Motivation, and Consent.Qualitative health research · 2022Article
- Article
- Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers.PloS one · 2021Article
- Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States.International journal of qualitative methodsArticle
- A Content Analysis of 100 Qualitative Health Research Articles to Examine Researcher-Participant Relationships and Implications for Data Sharing.International journal of qualitative methodsArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
We found no studies in the United States that explored research participants' perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community. These concerns, though, did not deter them from participating in research. Notably, participants hoped their data would be shared and may have expected or assumed this was already happening. While many could not recollect details about data-sharing plans for studies in which they participated, they trusted researchers and institutions to appropriately handle data sharing. If individuals view data sharing as an extension or integral part of their participation in qualitative research, then researchers may have a stronger obligation to share qualitative data than previously thought. Guidelines and tools to assist researchers and institutional review board members in ethical and responsible qualitative data sharing are urgently needed.
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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.