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Understanding the decision to take the predictive test for Huntington disease
G J Meissen1, C A Mastromauro, D K Kiely
1Department of Psychology, Wichita State University, KS 67208.
American Journal of Medical Genetics
|June 15, 1991
Summary
Individuals at risk for Huntington disease (HD) seek predictive testing primarily to reduce anxiety and uncertainty. Most participants preferred knowing their gene status, even if unfavorable, over remaining uncertain.
Area of Science:
- Neurogenetics
- Medical Psychology
- Clinical Genetics
Background:
- Huntington disease (HD) is an inherited neurodegenerative disorder.
- Predictive genetic testing allows individuals at risk to determine their gene status before symptom onset.
Purpose of the Study:
- To investigate the motivations behind seeking predictive Huntington disease (HD) testing.
- To understand the anticipated psychological and practical reactions to test results.
Main Methods:
- Structured personal interviews were conducted with 40 individuals at 50% risk for HD and 31 companions.
- Participants were part of the predictive test protocol for Huntington disease.
Main Results:
- Key motivations for testing included reducing anxiety, uncertainty, and enhancing life planning.
- Participants anticipated more positive than negative outcomes, regardless of test results.
- 95% of participants preferred knowing their HD gene status over remaining at 50% risk.
Conclusions:
- The desire to alleviate chronic stress, anxiety, and uncertainty drives many individuals to pursue predictive Huntington disease (HD) testing.
- Predictive testing offers perceived benefits in planning and psychological well-being, outweighing potential adverse impacts for most at-risk individuals.