Journal article
Motivations for data sharing—views of research participants from four European countries: A DIRECT study
N Shah, V Coathup, H Teare, I Forgie, GN Giordano, TH Hansen, L Groeneveld, M Hudson, E Pearson, H Ruetten, J Kaye
European Journal of Human Genetics | NATURE PUBLISHING GROUP | Published : 2019
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 gi..
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Awarded by European Federation of Pharmaceutical Industries and Associations
Funding Acknowledgements
The authors would like to thank all of the teams in the consortium that assisted with the survey development, distribution, and collection, as well as the participants of the DIRECT project who participated in this study for their time. The work leading to this publication has received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement no. 115317 (DIRECT), resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies' in-kind contribution.