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

最近的技术进步使得可以安全共享的敏感人类参与者数据的数量增加。机构审查委员会(IRBs)传统上不愿允许共享此类数据，这不必要地限制了它们的长期重复使用。该项目旨在通过建立社会技术基础设施来支持数据储存库和IRB之间的持续对话和富有成效的伙伴关系，从而弥合现代安全共享敏感数据选项和IRB实践之间的差距，目的是试验关于与人类参与者共享和长期重新使用通过研究产生的敏感数据的新共识指南、协议和模板。该项目由国家科学基金会公共访问倡议支持，该倡议由NSF高级网络基础设施办公室代表基金会管理。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势和更广泛的影响审查标准进行评估，被认为值得支持。

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.