Working with Sensitive Research Data: The Qualitative Data Repository’s WSRD Project

This presentation will discuss the progress and preliminary findings of the Qualitative Data Repository’s (QDR) ongoing “Working with Sensitive Research Data” (WSRD) project. Collecting, analyzing, and sharing sensitive research data pose significant challenges. The societal benefit of creating new knowledge and the contribution that open data and materials make to rigorous science must be balanced with the potential risks that human populations can incur through participating in research, and that can arise when the sensitive data generated through research are shared. In order for human participants to be adequately protected and sensitive data to be responsibly handled, information about the risks associated with sharing those data and the steps taken to mitigate them must be accessible to Institutional Review Board (IRB) personnel, data repositories, funders, and journal editors and publishers. Due to imminent changes to federal regulations, documentation of IRB determinations may no longer be the primary means to convey that information. QDR’s WSRD project, supported by the National Science Foundation, seeks to catalyze and coordinate conversations about this challenge among multiple stakeholders, and develop tools that researchers can use to describe their data and the steps they took to reduce the risk of using and sharing them.