Ethics & Human Research
Volume 42, Issue 2 Pages: 1-33 March–April 2020
Incidental Findings :: Data Sharing N‐of‐1 Trials :: Deception
Research Participant Views regarding Qualitative Data Sharing
We found no studies in the United States that explored research participants’ perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community.
Jessica Mozersky, Meredith Parsons, Heidi Walsh, Kari Baldwin, Tristan McIntosh, James M. DuBois
First Published: 19 March 2020