Nisha Shah1, Victoria Coathup2, Harriet Teare2, Ian Forgie3, Giuseppe Nicola Giordano4, Tue Haldor Hansen5, Lenka Groeneveld6, Michelle Hudson7, Ewan Pearson8, Hartmut Ruetten9, Jane Kaye2. 1. HeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK. Nisha.shah@dph.ox.ac.uk. 2. HeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK. 3. Division of Molecular and Clinical Medicine, University of Dundee, Dundee, UK. 4. Department of Clinical Sciences, Genetic and Molecular Epidemiology Unit, Lund University, Malmö, Sweden. 5. The Novo Nordisk Foundation Center for Basic Metabolic Research, Section of Metabolic Genetics, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark. 6. Department of Epidemiology and Biostatistics, Vrije Universiteit Medical centre, Amsterdam, The Netherlands. 7. NIHR Exeter Clinical Research Facility, University of Exeter Medical School, Exeter, UK. 8. Division of Population Health & Genomics, School of Medicine, University of Dundee, Dundee, UK. 9. Translational Medicine & Early Development, Sanofi-Aventis Deutschland GmbH, Frankfurt, Germany.
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 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.
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.
Entities:
Keywords:
data governance; data sharing; ethics; patient involvement; type II diabetes
Authors: Shira Rockowitz; Nicholas LeCompte; Mary Carmack; Andrew Quitadamo; Lily Wang; Meredith Park; Devon Knight; Emma Sexton; Lacey Smith; Beth Sheidley; Michael Field; Ingrid A Holm; Catherine A Brownstein; Pankaj B Agrawal; Susan Kornetsky; Annapurna Poduri; Scott B Snapper; Alan H Beggs; Timothy W Yu; David A Williams; Piotr Sliz Journal: NPJ Genom Med Date: 2020-07-06 Impact factor: 8.617
Authors: Shira Rockowitz; Nicholas LeCompte; Mary Carmack; Andrew Quitadamo; Lily Wang; Meredith Park; Devon Knight; Emma Sexton; Lacey Smith; Beth Sheidley; Michael Field; Ingrid A Holm; Catherine A Brownstein; Pankaj B Agrawal; Susan Kornetsky; Annapurna Poduri; Scott B Snapper; Alan H Beggs; Timothy W Yu; David A Williams; Piotr Sliz Journal: NPJ Genom Med Date: 2020-07-06 Impact factor: 8.617