Session: Strategies and Tools for Inclusive Healthcare and Health Research
The Right to be Recognized?: Strategies and Lessons for Participant Self-Determination of Anonymization Standards within Qualitative Research
Saturday, October 14, 2023
1:15 PM – 2:30 PM ET
Location: Iron (Fourth Floor)
Patient narratives can provide critical windows to issues, concerns, and experiences at risk of being overlooked. Participants often join qualitative interview-based studies out of a desire to share their story. However, the lack of clarity around qualitative data sharing standards, paired with research ethics’ tendency towards participant over-protection in the face of uncertainty, poses many barriers to how and whether patient testimonies get shared. These tensions increase when working with participants from marginalized backgrounds given increased obligations to ensure these often-overlooked voices are respected, protected, and heard.
As we found in a recent project, desires to protect participants from identification given the often-small sample sizes and intimate nature of narrative can lead journals and databases to require that authors redact key contextual details. One participant’s rich narrative of their experience confronting ethnic stereotypes became a distilled, generic reflection on how stereotypes may shape participant experiences. In the name of rigorous data anonymization standards, their testimony lost much of its epistemic value as they were rendered invisible within the narrative.
Here, we share the lessons learned from this project and the strategies we are using to address this tension in our current studies. We suggest: (1) the use of a more nuanced, ongoing informed consent process that consults with participants throughout each study; (2) building in interview guide questions to discuss participant data protection and sharing preferences. Through implementing these strategies, we hope to serve as better stewards of participant testimonies and build out tools for bioethicists going forward.
Asad Beck – Neuroscience – University of Washington; Sara Goering – Philosophy – University of Washington; Eran Klein – Neurology – Oregon Health & Science University; Timothy Brown – Bioethics and Humanities – University of Washington School of Medicine