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Sharing data for future research—engaging participants’ views about data governance beyond the original project : a DIRECT Study

Shah, Nisha; Coathup, Victoria; Teare, Harriet; Forgie, Ian; Giordano, Giuseppe Nicola LU ; Hansen, Tue Haldor; Groeneveld, Lenka; Hudson, Michelle; Pearson, Ewan and Ruetten, Hartmut, et al. (2019) In Genetics in Medicine 21(5). p.1131-1138
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-seven percent were supportive of sharing data... (More)

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-seven percent were supportive of sharing data postproject, and 90% were happy to share data with universities, and 56% with commercial companies. The top three priorities for data sharing were highly secure database, DIRECT researchers to monitor data used by other researchers, and researchers cannot identify participants. Respondents frequently suggested that a postproject Data Access Committee should involve a DIRECT researcher, diabetes clinician, patient representative, and a DIRECT participant. Conclusion: Preferences of how data should be governed, and what data could be shared and with whom varied between countries. Researchers are considered as key custodians of participant data. Engaging participants aids in designing governance to support their choices.

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organization
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type
Contribution to journal
publication status
published
subject
keywords
data governance, data sharing, ethics, patient involvement, type II diabetes
in
Genetics in Medicine
volume
21
issue
5
pages
1131 - 1138
publisher
Lippincott Williams & Wilkins
external identifiers
  • scopus:85053167600
ISSN
1098-3600
DOI
10.1038/s41436-018-0299-7
language
English
LU publication?
yes
id
e984e751-0185-4a9f-9276-9ecd96020294
date added to LUP
2018-10-24 13:27:49
date last changed
2019-08-14 04:25:57
@article{e984e751-0185-4a9f-9276-9ecd96020294,
  abstract     = {<p>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-seven percent were supportive of sharing data postproject, and 90% were happy to share data with universities, and 56% with commercial companies. The top three priorities for data sharing were highly secure database, DIRECT researchers to monitor data used by other researchers, and researchers cannot identify participants. Respondents frequently suggested that a postproject Data Access Committee should involve a DIRECT researcher, diabetes clinician, patient representative, and a DIRECT participant. Conclusion: Preferences of how data should be governed, and what data could be shared and with whom varied between countries. Researchers are considered as key custodians of participant data. Engaging participants aids in designing governance to support their choices.</p>},
  author       = {Shah, Nisha and Coathup, Victoria and Teare, Harriet and Forgie, Ian and Giordano, Giuseppe Nicola and Hansen, Tue Haldor and Groeneveld, Lenka and Hudson, Michelle and Pearson, Ewan and Ruetten, Hartmut and Kaye, Jane},
  issn         = {1098-3600},
  keyword      = {data governance,data sharing,ethics,patient involvement,type II diabetes},
  language     = {eng},
  number       = {5},
  pages        = {1131--1138},
  publisher    = {Lippincott Williams & Wilkins},
  series       = {Genetics in Medicine},
  title        = {Sharing data for future research—engaging participants’ views about data governance beyond the original project : a DIRECT Study},
  url          = {http://dx.doi.org/10.1038/s41436-018-0299-7},
  volume       = {21},
  year         = {2019},
}