ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT Study.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
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Who cites it
31 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- 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
- Individuals' preferences for future biological sample and genomic data sharing in the Australian Reproductive Genetic Carrier Screening Project.European journal of human genetics : EJHG · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- Sharing health data for research purposes: results of a population survey in Germany.BMC health services research · 2025Article
- Exploring the Italian Population's attitudes toward health data sharing for healthcare purpose and scientific research: a cross-sectional study.Journal of public health (Oxford, England) · 2025Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People.JMIR formative research · 2024Article
- A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development.BMC medical research methodology · 2023Article
- Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.JMIR human factors · 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
- The multidimensional legal nature of personal genomic sequence data: A South African perspective.Frontiers in genetics · 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
- Secondary research use of personal medical data: patient attitudes towards data donation.BMC medical ethics · 2021Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- Preferences of the Public for Sharing Health Data: Discrete Choice Experiment.JMIR medical informatics · 2021Article
- Context-Relative Norms Determine the Appropriate Type of Consent in Clinical Biobanks: Towards a Potential Solution for the Discrepancy between the General Data Protection Regulation and the European Data Protection Board on Requirements for Consent.Science and engineering ethics · 2020Article
- "Who is watching the watchdog?": ethical perspectives of sharing health-related data for precision medicine in Singapore.BMC medical ethics · 2020Article
Corrections and comments
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeBiomedical data governance strategies should ensure that data are collected, stored, and used ethically and lawfully. However, research participants' preferences for how data should be governed is least studied. The Diabetes Research on Patient Stratification (DIRECT) project collected substantial amounts of health and genetic information from patients at risk of, and with type II diabetes. We conducted a survey to understand participants' future data governance preferences. Results will inform the postproject data governance strategy.
methodsA survey was distributed in Denmark, Sweden, The Netherlands, and the United Kingdom.
resultsIn total 855 surveys were returned. Ninety-seven percent were supportive of sharing data postproject, and 90% were happy to share data with universities, and 56% with commercial companies. The top three priorities for data sharing were highly secure database, DIRECT researchers to monitor data used by other researchers, and researchers cannot identify participants. Respondents frequently suggested that a postproject Data Access Committee should involve a DIRECT researcher, diabetes clinician, patient representative, and a DIRECT participant.
conclusionPreferences of how data should be governed, and what data could be shared and with whom varied between countries. Researchers are considered as key custodians of participant data. Engaging participants aids in designing governance to support their choices.
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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.