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

Shah, Nisha
Coathup, Victoria
Teare, Harriet
Forgie, Ian
Giordano, Giuseppe Nicola
Hansen, Tue Haldor
Groeneveld, Lenka
Hudson, Michelle
Pearson, Ewan
Ruetten, Hartmut
Kaye, Jane

Open link

Publication date

January 2019

DOI

10.1038/s41431-019-0344-2

Publisher

Nature Publishing Group

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 ...