Patients' views on the ethical challenges of early Parkinson disease detection

Abstract

Although patients with PD reported the time to diagnosis retrospectively as burdensome, the majority was skeptical regarding early disclosure of risk, especially with regard to the lack of pharmacologic options. Circumstances under which early detection and disclosure would have been approved by the majority of patients were (1) advice on lifestyle changes (exercise, nutrition) as potentially disease course-modifying therapy; (2) the establishment of an early diagnosis "culture," including early clarification of the patients' wish to know; and (3) regular support and follow-up of individuals after risk disclosure.