Pacific Northwest Center for Translational Environmental Health Research

该项目将开发和验证一种调查工具， 关于使用和传播公共使用数据集结果的看法， 生物伦理学能力。具体来说，俄勒冈州社区参与核心小组先前的工作 州立大学西北太平洋转化环境健康研究中心 确定了与公共使用数据集的研究有关的伦理考虑。不像 个别研究，其中通常有报告研究结果的道德义务 （RBRR）研究参与者，没有分析的伦理考虑，也没有 关于返回从公共使用数据集收集的汇总结果的指导。使用 来自内容专家和代表社区团体的利益相关者的反馈， 环境正义组织，环境健康组织和社区- 我们将聘请专家，开发一种调查工具，以描述科学家和公众的看法， 围绕公共使用数据集的结果的使用和传播。调查工具将 此外，还要求提供有关调整FAIR原则（可查找、可解释、可互操作， 可重用），以返回从公共使用数据中获得的聚合数据，作为增加 公众对研究结果的理解。该调查工具将在一个 跨学科科学家和公众。调查工具、相关数据 字典，验证结果将通过OPEN ICSPR公开。发展 这一调查工具的使用将使未来的研究成为可能，在未来的研究中， 公众可以接受调查，由此产生的数据将有助于指导监督机构和用户 关于是否需要纳入RBRR战略的公开数据。

This project will develop and validate a survey tool designed to characterize scientist and public perceptions around the use and dissemination of results from public use datasets to build capacity in bioethics. Specifically, prior work by the Community Engagement Core of the Oregon State University Pacific Northwest Center for Translational Environmental Health Research has identified ethical considerations related to research resulting from public-use datasets. Unlike individual studies, wherein there is often an ethical obligation to report-back research results (RBRR) to study participants, there has not been an analysis of the ethical considerations nor guidance concerning the return of aggregate results gleaned from public-use datasets. Using feedback from content experts and stakeholders representing community groups, environmental justice organizations, environmental health organizations and community- engaged specialists, we will develop a survey tool to characterize scientist and public perceptions around the use and dissemination of results from public use datasets. The survey tool will additionally request feedback on adapting FAIR principles (Findable, Accessible, Interoperable, Reusable) to the return of aggregate data obtained from public-use data, as a way of increasing public understanding of research findings. The survey tool will be validated amongst a population of interdisciplinary scientists and the public. The survey tool, associated data dictionary, and validation results will be publicly available via OPEN ICSPR. The development of this survey tool will enable future research, wherein a large, diverse population of scientists and the public can be surveyed, and the resultant data will help guide oversight bodies and users of publicly available data about whether the inclusion of a RBRR strategy should be required.