Factors Influencing Patient Disclosure of Parkinson's Disease Genetic Testing Results to Relatives.

ABSTRACT:

Background

Persons with Parkinson's disease (PD) who have received genetic test results are faced with the decision of whether, and how, to share that information with family. Studies in other specialties have shown high rates of disclosure motivated by a sense of responsibility. Rates of, and attitudes surrounding, disclosure have yet to be reported in this population.

Objectives

To explore the disclosure practices and motivations of patients with PD regarding genetic test results, allowing insight to guide genetic counseling and navigation of test result discussions.

Methods

A cross-sectional online survey was distributed to adults with PD and previous genetic test results. Survey questions assessed demographics, genetic testing results and delivery, sharing behavio

SUBMITTER: Schulze J 

PROVIDER: S-EPMC11233843 | biostudies-literature | 2024 Jul

REPOSITORIES: biostudies-literature