Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study
Mirinda Tyo, Jennifer Mammen, Jocelyn Silva, Varun Reddy, Nami Shah, Kristin Magan, John Hornickel, Sue Marek, Russell Lott, Dang Thao-Uyen, Tatiana Solodova, Joyce H Cadorette, Peggy Auinger, Melissa Kostrzebski, Katherine Purdy, Catherine M Kopil, Diane Stephenson, Jamie L AdamsBackground
Research participants increasingly desire access to their personalized results. A growing emphasis on patient engagement and recognition of participants as partners in research has intensified ethical considerations around data sharing and return of results. While some research teams have started returning personalized results, important questions remain about how to do so responsibly and effectively.
Objective
To explore the perspectives of people with Parkinson's on return of individual research results, including preferences regarding digital data.
Methods
This qualitative sub-study was conducted as part the WATCH-PD study (Wearable Assessments in The Clinic and at Home in PD). Online qualitative interviews to explore perceptions on return of research results were conducted annually each year from 2022–2025. Content analysis techniques were used to analyze transcripts.
Results
33 participants completed interviews and were included in the analysis. Three themes emerged: (1) Most participants desire to receive personal results provided the results are understandable to them; (2) Knowing personal results could support disease management and future planning; and (3) Access to data is an ethical obligation of the research team and a reciprocal return of personal information.
Conclusions
Participants in this study wanted the choice to receive personal research results, and most preferred disclosure even when findings might be unfavorable. Although returning person-level data presents logistical and ethical challenges, engaging participants as partners through transparent data sharing may strengthen engagement, trust, and advance patient-centered research.