Abstract
Most research funders and journals now require researchers to make their data available for sharing. There is a growing body of literature on research participants’ attitudes towards health data sharing, but less evidence regarding views of participants taking part in longitudinal studies, clinical trials or public health research. 1,664 respondents from the UK (participants in longitudinal studies ALSPAC and ACONF and members of Patient and Public Involvement (PPI) groups completed a questionnaire survey exploring attitudes towards data sharing, including consent and data storage. Respondents were most concerned about privacy and data security and highlighted concerns about open access and sharing with commercial organisations.
| Original language | English |
|---|---|
| Article number | 15562646261452724 |
| Number of pages | 22 |
| Journal | Journal of Empirical Research on Human Research Ethics |
| DOIs | |
| Publication status | Published - 3 Jun 2026 |
Bibliographical note
Publisher Copyright:© The Author(s) 2026. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
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