Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease
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Much of the qualitative research on Huntington disease has focused on the genetic testing aspects of HD. The overall purpose of this qualitative study was to gather information about the everyday experience of living with the risk of developing Huntington disease in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. Data for this article was obtained from unstructured, open-ended qualitative interviews of a sample of people participating in the PHAROS study. PHAROS, the Prospective Huntington At-Risk Observational Study, is a multi-site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of Huntington disease in individuals at 50% risk for HD who have chosen not to undergo genetic testing. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative description to construct and explore two main themes: (1) careful concealment of risk as an act of self-preservation and (2) preserving hope.
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- Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease
Journal of Genetic Counseling
Volume 17, Issue 1 , pp 117-128
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- Genetic disease
- Genetic testing
- Huntington disease
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- Author Affiliations
- 1. Department of Medical and Molecular Genetics, Indiana University School of Medicine, 975 West Walnut Street, Indianapolis, IN, 46202-5251, USA
- 2. Family Health Nursing Department, Indiana University School of Nursing, Indianapolis, IN, USA
- 3. Indiana University School of Nursing, Indianapolis, IN, USA
- 4. Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA
- 5. Department of Neurology, Columbia University, New York, NY, USA
- 6. Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, JamesCare at Dublin, Dublin, OH, USA
- 7. Hereditary Neurological Disease Centre, Wichita, KS, USA
- 8. Department of Neurology, Hennepin County Medical Center, Minneapolis, MN, USA