Journal article
Sharing data for future research—engaging participants’ views about data governance beyond the original project: 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
Genetics in Medicine | NATURE PUBLISHING GROUP | Published : 2019
Abstract
Purpose: Biomedical 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. Methods: A survey was distributed in Denmark, Sweden, The Netherlands, and the United Kingdom. Results: In total 855 surveys were returned. Ninety-se..
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Awarded by Seventh Framework Programme
Funding Acknowledgements
The authors would like to thank all of the teams in the consortium that assisted with the survey development, distribution, and collection. 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.