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Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT study

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 prefe... Expand abstract
Publication status:
Published
Peer review status:
Peer reviewed

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Publisher copy:
10.1038/s41436-018-0299-7

Authors


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Institution:
University of Oxford
Department:
Nuffield Dept of Population Health
Role:
Author
More by this author
Institution:
University of Oxford
Division:
MSD
Department:
Nuffield Department of Population Health
Sub department:
Population Health
Oxford college:
Corpus Christi College
Role:
Author
ORCID:
0000-0003-0557-6757
More by this author
Institution:
University of Oxford
Department:
Nuffield Dept of Population Health
Sub department:
Population Health
Role:
Author
ORCID:
0000-0002-3783-7547
More from this funder
Name:
Innovative Medicines Initiative Joint Undertaking
Grant:
115317
Publisher:
Springer Nature
Journal:
Genetics in Medicine More from this journal
Volume:
21
Pages:
1131–1138
Publication date:
2018-09-28
Acceptance date:
2018-08-30
DOI:
EISSN:
1530-0366
ISSN:
1098-3600
Pmid:
30262927
Language:
English
Keywords:
Pubs id:
pubs:923873
UUID:
uuid:c83e3712-2e1c-4823-9a55-26abedae4957
Local pid:
pubs:923873
Source identifiers:
923873
Deposit date:
2018-11-05

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