Pacific Northwest Center for Translational Environmental Health Research

西北太平洋转化环境健康研究中心

• 批准号: 10786972
• 负责人: Jamie DeWitt
• 金额: $ 24.97万
• 依托单位: OREGON STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-07-01 至 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10786972
• 关键词: Academia; Address; Back; Bioethics; Case Study; Collaborations; Communities; County; Data; Data Aggregation; Data Collection; Data Set; Databases; Deposition; Development; Ensure; Environmental Exposure; Environmental Health; Equity; Ethical Analysis; Ethics; FAIR principles; Feedback; Foundations; Future; Glean; Goals; Health; Individual; Information Dissemination; Institutional Review Boards; Knowledge; Oregon; Pacific Northwest; Participant; Perception; Population; Population Heterogeneity; Public Health; Recurrence; Reporting; Reproducibility; Research; Research Personnel; Resources; Scientist; Specialist; Surveys; Testing; Translating; Translations; Universities; Validation; Work; clinically significant; community based participatory research; community engagement; data de-identification; data dictionary; data reuse; data sharing; design; environmental justice; health knowledge; health organization; tool

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.

该项目将开发并验证旨在表征科学家和公众的调查工具 围绕公共使用数据集的结果使用和传播结果的看法 生物伦理学的能力。具体而言，俄勒冈州社区参与核心的先前工作 州立大学太平洋西北转化环境健康研究中心已有 确定了与公共用途数据集产生的研究有关的道德考虑。与众不同 个人研究，其中通常有道德义务报告结果研究结果 （RBRR）为了研究参与者，尚未对道德考虑的分析或 有关从公共使用数据集收集的汇总结果返回的指南。使用 来自代表社区团体的内容专家和利益相关者的反馈， 环境正义组织，环境卫生组织和社区 - 参与专家，我们将开发一种调查工具来表征科学家和公众的看法 围绕公共使用数据集的结果使用和传播。调查工具将 另外，请求有关调整公平原则的反馈（可访问，可互操作，可互操作， 可重复使用的），以返回从公共利用数据获得的汇总数据，以增加 公众对研究结果的理解。调查工具将在A中得到验证 跨学科科学家和公众的人口。调查工具，相关数据 字典和验证结果将通过Open ICSPR公开获得。发展 该调查工具将实现未来的研究，其中大量，多样化的科学家 可以调查公众，结果数据将有助于指导监督机构和用户 关于是否需要包含RBRR策略的公开数据。