Journal of Genetic Counseling

, Volume 20, Issue 4, pp 384–395

Genetic Testing and Parkinson Disease: Assessment of Patient Knowledge, Attitudes, and Interest

  • Dana Clay Falcone
  • Elisabeth McCarty Wood
  • Sharon X. Xie
  • Andrew Siderowf
  • Vivianna M. Van Deerlin
Original Research

DOI: 10.1007/s10897-011-9362-0

Cite this article as:
Falcone, D.C., Wood, E.M., Xie, S.X. et al. J Genet Counsel (2011) 20: 384. doi:10.1007/s10897-011-9362-0

Abstract

The most common genetic contributor to late-onset Parkinson disease (PD) is the LRRK2 gene. In order to effectively integrate LRRK2 genetic testing into clinical practice, a strategy tailored to the PD population must be developed. We assessed 168 individuals with PD for baseline knowledge of genetics, perceived risk, and interest and opinions regarding genetic counseling and testing. Most participants felt that they were familiar with general genetics terms but overall knowledge levels were low, with an average score of 55%. The majority of participants thought it was likely they inherited a PD gene (72%), believed genetic testing for PD would be useful (86%), and were interested in genetic testing (59%) and genetic counseling (56%). However, only a few participants had heard of any genetic tests for PD (29%) or LRRK2 (10%). There appears to be a significant level of interest in genetics and genetic testing within the PD population, but a considerable deficit in genetics knowledge and an over-estimation of risk. Genetic education and counseling tools to address these needs were developed to provide patients with the ability to make informed and knowledgeable genetic testing decisions.

Keywords

Parkinson diseaseGenetic testingGenetic knowledgeAttitudesPerceived risk

Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Dana Clay Falcone
    • 1
  • Elisabeth McCarty Wood
    • 1
  • Sharon X. Xie
    • 2
  • Andrew Siderowf
    • 3
  • Vivianna M. Van Deerlin
    • 1
  1. 1.Department of Pathology and Laboratory Medicine, Center for Neurodegenerative Disease ResearchUniversity of PennsylvaniaPhiladelphiaUSA
  2. 2.Department of Biostatistics and EpidemiologyUniversity of PennsylvaniaPhiladelphiaUSA
  3. 3.Department of NeurologyPennsylvania HospitalPhiladelphiaUSA