Optimizing Openness in Human Participants Research: Harmonizing Standards for Consent Agreements and Data Management Plans to Empower the Reuse of Sensitive Scientific Data

优化人类参与者研究的开放性：协调同意协议和数据管理计划的标准，以促进敏感科学数据的重用

• 批准号: 1839018
• 负责人: Colin Elman
• 金额: $ 29.98万
• 依托单位: Syracuse University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-10-01 至 2023-09-30
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1839018&HistoricalAwards=false
• 关键词: Optimizing; Openness; Human; Participants; Research

Recent technological advances allow for an increase in the amount of sensitive human participants data that can be safely shared. Institutional Review Boards' (IRBs) traditional reluctance to allow the sharing of such data unnecessarily constrains their long-term reuse. This project seeks to close the gap between modern options for safely sharing sensitive data and IRB practices by establishing socio-technical infrastructure to support a sustained dialogue and productive partnerships between data repositories and IRBs with the objective to pilot new consensus guidance, protocols, and templates on the sharing and long-term re-use of sensitive data generated through research with human participants.This project is supported by the National Science Foundation Public Access Initiative which is managed by the NSF Office of Advanced Cyberinfrastructure on behalf of the Foundation.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.

最近的技术进步允许增加可以安全共享的敏感人类参与者数据的数量。机构审查委员会（irb）传统上不愿允许共享这些数据，这不必要地限制了它们的长期重用。该项目旨在通过建立社会技术基础设施来支持数据存储库和IRB之间的持续对话和富有成效的伙伴关系，从而缩小安全共享敏感数据的现代选择与IRB实践之间的差距，目的是在与人类参与者一起研究产生的敏感数据的共享和长期重用方面试行新的共识指导、协议和模板。本项目由美国国家科学基金会公共访问计划提供支持，该计划由美国国家科学基金会高级网络基础设施办公室代表基金会管理。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。