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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Sharing Qualitative Research Data: Addressing the Ethical and Logistical Challenges


ELSIcon2022 • Paper • June 1, 2022

James DuBois, Jessica Mozersky

Qualitative data sharing (QDS) promises several benefits: enabling secondary analyses to extend project findings at low cost and burden to participants; increasing transparency; supporting training in qualitative coding approaches; and compliance with new NIH data sharing rules that go into effect in 2023 and apply to all data collected with NIH funding. However, attitudes of researchers toward QDS are bimodal--nearly evenly divided between support and opposition. Researcher concerns include: protecting trust of participants; preventing identification of participants; ensuring the quality of secondary analyses, which may occur with reduced context; and time and expense. With funding from NHGRI, our team at Washington University School of Medicine has engaged stakeholders (researchers, participants, IRB members, and data curators), produced guidelines for responsible QDS, developed software to support the de-identification of qualitative research transcripts, and piloted the data deposit process with 30 researchers. In this presentation we will present key findings from our interview and survey engagement with stakeholders, central elements of our guidelines, a description of our software's performance (F1 score=.96), and lessons learned from our pilot project with the ICPSR at the University of Michigan. Lessons include the needs to plan for QDS (e.g., in budgets and consent forms), to use software judiciously, and to refine guidelines based on experience with QDS. <br>


Reflections on the ELSI field
Methodology and study design

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