Abstract
Fairness in Research: What Participants with Parkinson's Want to Know About Their Personal Results from the WATCH-PD study People taking part in research increasingly want to see their own results, but studies have not always shared individual data. This study looked at what people with Parkinson's disease thought about getting their personal results from a long-term study using wearable devices (WATCH-PD). The researchers reviewed 134 interview transcripts from 33 participants collected between 2022 and 2025. Three main findings came out: Most participants want to receive their personal results, as long as the information is explained in a way they can understand.Participants felt that having their results could help them manage their condition and plan for the future.Many saw access to their data as the fair and ethical thing to do, since they helped generate it. The study concludes that people with PD in this study wanted the option to get individual results, even if the results were not good news. Although sharing personal data raises practical and ethical challenges, doing so openly and with participant input could increase trust, engagement, and make research more patient-centered.