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Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals
G Evers-Kiebooms1, M Decruyenaere
1Psychosocial Genetics Unit, Center for Human Genetics, University Hospital Gasthuisberg, Leuven, Belgium. gerry.kiebooms@med.kuleuven.ac.be
Patient Education and Counseling
|December 2, 1998
Summary
Predictive DNA testing for Huntington's disease (HD) offers insights into decision-making and psychological well-being. This review explores test uptake, impact, and prenatal diagnosis options for families.
Area of Science:
- Neurogenetics
- Medical Psychology
- Bioethics
Background:
- Predictive DNA testing for Huntington's disease (HD) marked a significant advancement.
- Understanding the factors influencing testing decisions and outcomes is crucial for patient care.
Purpose of the Study:
- To outline the professional challenges in developing and implementing HD predictive testing protocols.
- To analyze factors affecting predictive test uptake using the Health Belief Model.
- To review the psychological impact of test results and the utilization of prenatal diagnosis in HD.
Main Methods:
- Literature review and analysis of factors influencing predictive testing decisions.
- Application of the Health Belief Model to compare tested and untested individuals.
- Assessment of prenatal diagnosis utilization and ethical considerations.
Main Results:
- The study identifies key factors influencing the decision-making process for predictive HD testing.
- It reviews the psychological impact of receiving test results on individuals and families.
- Utilization of prenatal diagnosis, including preimplantation genetic diagnosis, is assessed.
Conclusions:
- Predictive testing for HD presents complex professional, psychological, and ethical challenges.
- The Health Belief Model provides a framework for understanding testing behaviors.
- Careful consideration of prenatal diagnostic options is essential for families affected by HD.