{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T05:24:37Z","timestamp":1767677077103},"reference-count":23,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2007,10,18]],"date-time":"2007-10-18T00:00:00Z","timestamp":1192665600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2008,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2010ended qualitative interviews of a sample of people participating in the PHAROS study. PHAROS, the Prospective Huntington At\u2010Risk Observational Study, is a multi\u2010site 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\u2010preservation and (2) preserving hope.<\/jats:p>","DOI":"10.1007\/s10897-007-9133-0","type":"journal-article","created":{"date-parts":[[2007,10,17]],"date-time":"2007-10-17T14:32:45Z","timestamp":1192631565000},"page":"117-128","source":"Crossref","is-referenced-by-count":40,"title":["Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease"],"prefix":"10.1002","volume":"17","author":[{"given":"Kimberly A.","family":"Quaid","sequence":"first","affiliation":[{"name":"Department of Medical and Molecular Genetics Indiana University School of Medicine 975 West Walnut Street Indianapolis IN 46202\u20105251 USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sharon L.","family":"Sims","sequence":"additional","affiliation":[{"name":"Family Health Nursing Department Indiana University School of Nursing Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Melinda M.","family":"Swenson","sequence":"additional","affiliation":[{"name":"Indiana University School of Nursing Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joan M.","family":"Harrison","sequence":"additional","affiliation":[{"name":"Department of Neurology Emory University School of Medicine Atlanta GA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carol","family":"Moskowitz","sequence":"additional","affiliation":[{"name":"Department of Neurology Columbia University New York NY USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nonna","family":"Stepanov","sequence":"additional","affiliation":[{"name":"Arthur G. 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