ArticleJournal of empirical research on human research ethics : JERHRE2020
Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis.
Article in Journal of empirical research on human research ethics : JERHRE, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 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
- Biomedical data repositories require governance for artificial intelligence/machine learning applications at every step.JAMIA open · 2025Article
- Clinical Data Warehousing: A Scoping Review.Journal of the Society for Clinical Data Management · 2024Article
- Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications.Journal of empirical research on human research ethics : JERHRE · 2023Article
- A survey of computable biomedical knowledge repositories.Learning health systems · 2023Article
- Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents.BMC medical ethics · 2022Article
- Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.European journal of human genetics : EJHG · 2022Article
- Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands.European journal of human genetics : EJHG · 2021Article
- «If you give them your little finger, they'll tear off your entire arm»: losing trust in biobank research.Medicine, health care, and philosophy · 2020Article
- Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.BMC medical ethics · 2020Article
- Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes.Journal of empirical research on human research ethics : JERHREArticle
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
No grant is acknowledged in the PubMed record.
Abstract
Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data repository benefits the public, the interests of data collectors, the characteristics of the collected data, and application of informed consent for retaining control over personal data. Concerns about the aims and range of data repository appeared to influence withdrawal of participation. Our findings underscore ethical and practical issues relating to data collection and consent procedures in human research.
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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.