ArticleEuropean journal of human genetics : EJHG2019
Motivations for data sharing-views of research participants from four European countries: A DIRECT study.
Article in European journal of human genetics : EJHG, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
What it found
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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
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing.PLOS digital health · 2024Article
- Ethical, Legal, and Practical Concerns Surrounding the Implemention of New Forms of Consent for Health Data Research: Qualitative Interview Study.Journal of medical Internet research · 2024Article
- Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.Journal of medical Internet 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 perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.Frontiers in genetics · 2023Article
- "Data makes the story come to life:" understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom-a qualitative study.BMC medical ethics · 2022Article
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- Qualitative Data Sharing: Participant Understanding, Motivation, and Consent.Qualitative health research · 2022Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.Journal of medical Internet research · 2021Article
- "Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore.BMC medical ethics · 2020Article
- Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe.Life sciences, society and policy · 2020Article
- Research Participant Views regarding Qualitative Data Sharing.Ethics & human research · 2020Article
- Sharing of Clinical Trial Data and Samples: The Cancer Patient Perspective.Frontiers in medicine · 2020Article
- Article
- Connected Health User Willingness to Share Personal Health Data: Questionnaire Study.Journal of medical Internet research · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
The purpose of this study was to explore and compare different countries in what motivated research participants' decisions whether to share their de-identified data. We investigated European DIRECT (Diabetes Research on Patient Stratification) research project participants' desire for control over sharing different types of their de-identified data, and with who data could be shared in the future after the project ends. A cross-sectional survey was disseminated among DIRECT project participants. The results found that there was a significant association between country and attitudes towards advancing research, protecting privacy, and beliefs about risks and benefits to sharing data. When given the choice to have control, some participants (<50% overall) indicated that having control over what data is shared and with whom was important; and control over what data types are shared was less important than respondents deciding who data are shared with. Danish respondents indicated higher odds of desire to control data types shared, and Dutch respondents showed higher odds of desire to control who data will be shared with. Overall, what research participants expect in terms of control over data sharing needs to be considered and aligned with sharing for future research and re-use of data. Our findings show that even with de-identified data, respondents prioritise privacy above all else. This study argues to move research participants from passive participation in biomedical research to considering their opinions about data sharing and control of de-identified biomedical data.
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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.