Attitudes toward Data Management and Repository-based Approaches to Sharing Sensitive Data among Researchers from Different Disciplines

The broader project seeks to understand challenges researchers face when they seek to simultaneously share data they collect from human participants, while also fulfilling their ethical obligations to human participants and following all relevant privacy and confidentiality regulations. Meeting these goals can be facilitated by the use of a variety of privacy-preserving tools (PPTs) and resources. In this presentation, we examine researchers’ perceptions of data sensitivity in different research scenarios. Specifically, we will share quantitative results from an online survey of 200 purposefully recruited respondents from across 12 social science and biomedical disciplines, asking about their familiarity with and propensity to use resources and techniques that might enable better data management, as well as appropriate sharing of sensitive data (ex: data use agreements, virtual enclaves, etc.). Additionally, we discuss respondents’ reports on their actual experiences with planning for data sharing in the context of a concrete research project and their reports on whether they actually shared the data, what barriers they encountered and what information resources they used in the process. We will also discuss common themes in respondents’ free-text answers to a question about how they personally define research data sensitivity. We highlight common challenges researchers perceive in planning for data sharing of what they consider to be sensitive data, which is of relevance to the work of research data librarians. Relatedly, the presentation also highlights possible avenues for both general assistance and project-tailored guidance data, which librarians are well-poised to offer. The overarching goal of the project is to inform next steps in the development of technological and operational approaches that a variety of stakeholders in the academic research data landscape (digital repositories; academic journals; funders; as well as data-related library and IT services and IRBs at universities) can offer to researchers for their data-related research needs.