Motivations for data sharing-views of research participants from four European countries: A DIRECT study.

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

SUBMITTER: Shah N 

PROVIDER: S-EPMC6461907 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature