Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study

Area of Science:

• Neuroscience
• Genetics
• Epidemiology

Background:

• Limited data exists on participant preferences for disclosing Parkinson's disease (PD) risk in population studies.
• Understanding these preferences is crucial for ethical and effective risk communication in neurodegenerative disease research.

Purpose of the Study:

• To investigate participant preferences regarding the disclosure of their individual risk for developing Parkinson's disease (PD).
• To assess attitudes towards lifestyle changes and clinical trial participation following risk disclosure.

Main Methods:

• A pilot study was conducted within the European Healthy Brain Aging (HeBA) multicenter study.
• Participants (≥50 years, no neurodegenerative diseases) underwent remote PD risk assessment and completed a structured questionnaire on risk disclosure preferences during in-person visits.

Main Results:

• A significant majority (79%) of the 81 participants desired unconditional disclosure of their PD risk.
• Most participants indicated they would adopt a healthier lifestyle if informed of a positive, specific PD risk.
• 66% expressed willingness to participate in future placebo-controlled disease-modification trials.

Conclusions:

• Participants demonstrated an open attitude towards receiving information about their future risk of PD.
• Individuals showed a proactive approach to managing their health risks, including lifestyle modifications and trial participation.