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Journal of Genetic Counseling

, Volume 27, Issue 5, pp 1200–1209 | Cite as

Parkinson’s Disease: Patients’ Knowledge, Attitudes, and Interest in Genetic Counseling

  • Kristin A. Maloney
  • Dina S. Alaeddin
  • Rainer von Coelln
  • Shannan Dixon
  • Lisa M. Shulman
  • Katrina Schrader
  • Yue Guan
Original Research

Abstract

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score = 26, range = 9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β = 0.6, p < 0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.

Keywords

Parkinson’s disease Genetic counseling Genetic testing Attitudes Knowledge 

Notes

Acknowledgements

The authors thank the patients in the University of Maryland Parkinson’s Disease and Movement Disorders Center (UMPDMC) for their participation. We thank Christina Griffin of UMPDMC for her assistance with recruiting and IRB application. This study was performed as part of a thesis project to fulfill a degree requirement of the Master’s of Genetic Counseling Training Program at the University of Maryland School of Medicine.

Compliance with Ethical Standards

Conflict of Interest

Kristin Maloney, Dina Alaeddin, Rainer von Coelln, Shannan Dixon, Lisa M. Shulman, Katrina Schrader, and Yue Guan report that they have no conflict of interest.

Human Studies and Informed Consent

The current study was reviewed and approved by the University of Maryland School of Medicine Institutional Review Board. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  1. 1.Department of MedicineUniversity of Maryland School of MedicineBaltimoreUSA
  2. 2.Program for Personalized & Genomic Medicine, Department of MedicineUniversity of Maryland School of MedicineBaltimoreUSA
  3. 3.Inova Translational Medicine InstituteFalls ChurchUSA
  4. 4.Department of NeurologyUniversity of Maryland School of MedicineBaltimoreUSA
  5. 5.Department of PediatricsUniversity of Maryland School of MedicineBaltimoreUSA

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