Pacific Northwest Center for Translational Environmental Health Research

Oregon State University, Corvallis OR

Investigators

Linked publications & trials

Abstract

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.