Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease
Open Access
- 18 October 2007
- journal article
- research article
- Published by Wiley in Journal of Genetic Counseling
- Vol. 17 (1), 117-128
- https://doi.org/10.1007/s10897-007-9133-0
Abstract
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.Keywords
This publication has 16 references indexed in Scilit:
- Parents Sharing Information With Their Children About Genetic ConditionsJournal of Pediatric Health Care, 2005
- Disclosing Genetic Test Results to Family MembersJournal of Nursing Scholarship, 2005
- To tell or not to tell: barriers and facilitators in family communication about genetic riskClinical Genetics, 2003
- Predictive, pre‐natal and diagnostic genetic testing for Huntington's disease: the experience in Canada from 1987 to 2000Clinical Genetics, 2003
- Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information * Commentary * Author's replyJournal of Medical Ethics, 2003
- Learning from the voicelessNew Genetics and Society, 2003
- ‘There’s this thing in our family’: predictive testing and the construction of risk for Huntington DiseaseSociology of Health & Illness, 1999
- A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomesCell, 1993
- A polymorphic DNA marker genetically linked to Huntington's diseaseNature, 1983
- Huntington’s ChoreaPublished by Springer Science and Business Media LLC ,1981