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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为未来的研究共享数据——参与参与者对原始项目之外的数据治理的看法：一项直接研究。

目的 生物医学数据治理策略应确保以合乎道德和合法的方式收集、存储和使用数据。然而，研究参与者对如何管理数据的偏好研究最少。糖尿病患者分层研究 (DIRECT) 项目从有 II 型糖尿病风险和患有 II 型糖尿病的患者那里收集了大量的健康和遗传信息。我们进行了一项调查，以了解参与者未来的数据治理偏好。结果将为项目后数据治理策略提供信息。方法 在丹麦、瑞典、荷兰和英国进行了一项调查。结果 总共返回了 855 份调查。97% 的人支持在项目后共享数据，90% 的人乐于与大学共享数据，56% 的人与商业公司共享数据。数据共享的前三个优先事项是高度安全的数据库、DIRECT 研究人员监控其他研究人员使用的数据以及研究人员无法识别参与者。受访者经常建议项目后数据访问委员会应包括 DIRECT 研究人员、糖尿病临床医生、患者代表和 DIRECT 参与者。结论 各国对如何管理数据、可以共享哪些数据以及与谁共享的偏好各不相同。研究人员被视为参与者数据的关键保管人。参与参与者有助于设计治理以支持他们的选择。受访者经常建议项目后数据访问委员会应包括 DIRECT 研究人员、糖尿病临床医生、患者代表和 DIRECT 参与者。结论 各国对如何管理数据、可以共享哪些数据以及与谁共享的偏好各不相同。研究人员被视为参与者数据的关键保管人。参与参与者有助于设计治理以支持他们的选择。受访者经常建议项目后数据访问委员会应包括 DIRECT 研究人员、糖尿病临床医生、患者代表和 DIRECT 参与者。结论 各国对如何管理数据、可以共享哪些数据以及与谁共享的偏好各不相同。研究人员被视为参与者数据的关键保管人。参与参与者有助于设计治理以支持他们的选择。