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Presymptomatic testing for Huntington's disease. Emotional aspects
J P Zak1, J T Zaglul, O T Mueller
1Department of Psychiatry and Behavioral Services.
The Journal of the Florida Medical Association
|February 1, 1994
Summary
Presymptomatic genetic testing for Huntington's disease is available, but without a cure, individuals face difficult emotional challenges. Advances in genetic diagnosis outpace treatment options for this neurodegenerative disorder.
Area of Science:
- Neurogenetics
- Medical Genetics
- Psychosocial Aspects of Disease
Background:
- Presymptomatic genetic testing for Huntington's disease (HD) has been accessible since 1986.
- The recent identification of the HD gene simplifies testing and may increase uptake.
- Significant advancements in genetic diagnostic capabilities contrast with limited progress in HD treatment.
Purpose of the Study:
- To review the emotional aspects experienced by individuals undergoing presymptomatic genetic testing for Huntington's disease.
- To understand the psychosocial impact of testing for a currently incurable neurodegenerative condition.
Main Methods:
- Review of emotional aspects of individuals tested at the Regional Genetic Program, University of South Florida.
- Data collected from May 1988 to April 1993.
Main Results:
- Individuals undergoing testing face the prospect of a disease with no cure and limited treatment options.
- The emotional burden associated with genetic testing for HD is a significant consideration.
Conclusions:
- Genetic testing for Huntington's disease presents complex emotional challenges due to the lack of curative treatments.
- Further research into the psychosocial support needs of individuals at risk for HD is warranted.