Exchanging Words: Engaging the Ethical and Practical Challenges of Sharing Qualitative Research Data

In 2023, the NIH mandated that researchers share data — including data from interviews and focus groups — at the time of first publication. Researchers in bioethics, nursing, and public health frequently conduct qualitative research (QR) on sensitive topics. Qualitative researchers have expressed concerns about informed consent, data privacy, the quality of secondary analyses, and other issues related to data sharing. Nevertheless, data sharing is the new norm.

Our team recently completed a 5-year NIH-funded project that piloted QR data sharing. We surveyed and interviewed diverse stakeholders, developed software to assist with data de-identification, wrote guidelines for data deposits, and worked with the ICPSR data repository to deposit 30 datasets.

In this presentation, we will relate key lessons learned and will engage the most urgent questions that qualitative researchers have, including: What counts as data that must be shared? Are there any exceptions to the sharing rule? How can I demonstrate respect to my participants and their communities? What standards and approaches are used for de-identifying QR data? What permissions do I need to share data? Can I restrict access to my data? What can I do to ensure that individuals who might use my data, do so in a rigorous and responsible manner? How should I budget for this?

At present, few repositories have experience curating QR data and QR textbooks are generally silent on the issue. It is thus urgent that qualitative researchers educate themselves on the myriad ethical, legal, and social issues surrounding QR data sharing.

Jessica Mozersky, PhD, MBE – Assistant Professor, Bioethics Research Center, Division of General Medical Sciences, Washington University School of Medicine