Background: As Parkinson disease (PD) rates increase, so does interest in finding new technological solutions for PD management. Despite substantial efforts to explore potential applications of artificial intelligence (AI) in PD management, research from the perspectives of people with PD on AI remains limited.
Objective: This study aims to explore the ethical considerations of AI in PD management from the perspective of people with PD.
Methods: A qualitative triangulation of 13 interviews and 2 focus groups (FGs) with a panel of expert-by-experience people with PD from 6 European countries was carried out using abductive thematic analysis. The 6 biomedical ethical principles conceptualized by Beauchamp and Childress guided the analysis. Participants varied in diagnosis, disease experiences, and technological backgrounds. A researcher with PD was involved from start to finish, providing valuable insights into data collection and analysis.
Results: Although optimistic that AI could enhance autonomy and beneficence through personalized, actionable insights for people with PD and their health care professionals, concerns arose over patient involvement, model accuracy and privacy, ethical injustices, and the psychological impact. Risk prediction, prognosis, and medication response were viewed differently in terms of potential value and ethical considerations, with risk prediction being perceived as the most ethically complex. To uphold autonomy, it was considered important for AI insights to be patient-accessible, and sensitive insights should be communicated by a health care professional who recognizes individual differences in desiring and responding to AI predictions.
Conclusions: While people with PD felt AI could personalize (self-)care and increase autonomy, concerns about psychological harm and widening inequalities highlight the importance of ethical safeguards. Our findings underscore the importance of AI integrations that prioritize individual needs, actively engage people with PD in the development, implementation, and interpretation of predictive AI, and establish guidelines to support health care professionals and minimize patient harm. Different forms of implementation and precautions should be taken for risk, progression, and medication response prediction.
JMIR Publications, 2026. Vol. 5, article id e74144
artificial intelligence, AI, co-design, medical ethics, biomedical ethical principles, Parkinson disease, predictive medicine, precision medicine, user perceptions, qualitative study