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

Abstract

BackgroundPreferences for risk disclosure in population‐based studies assessing Parkinson's disease (PD) risk have not been assessed so far.ObjectivesTo examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.MethodsAfter a remote PD risk assessment, a structured pilot‐questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in‐person visits at the Innsbruck study site.ResultsFrom the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo‐controlled disease‐modification trials, 66% stated they would probably or definitely participate.ConclusionsThis pilot‐study shows an open‐minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.