{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,18]],"date-time":"2026-09-18T20:44:37Z","timestamp":1789764277022,"version":"4.0.1"},"reference-count":21,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2010,8,24]],"date-time":"2010-08-24T00:00:00Z","timestamp":1282608000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["1RO1HG02449"],"award-info":[{"award-number":["1RO1HG02449"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2010,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Most of the research on reproduction in those at risk for Huntington Disease (HD) has focused on the impact of genetic testing on reproductive decision\u2010making. The main goal has been to determine whether discovering one is a carrier of the HD mutation changes an individual's or couple's decision to start a family or to have more children. The purpose of this qualitative study was to examine reproductive decision\u2010making in a sample of individuals at risk for HD who have chosen not to pursue genetic testing. PHAROS (Prospective Huntington At Risk Observational Study) is a multi\u2010site study that aims to establish whether experienced clinicians can reliably determine the earliest clinical symptoms of HD in a sample of individuals at 50% risk who have chosen not to pursue genetic testing. Data for this article were obtained from unstructured open ended qualitative interviews of a subsample of individuals participating in the PHAROS project. Interviews were conducted at six PHAROS research sites across the United States. In this paper, the research team used qualitative descriptive methods to construct and explore reproduction decision\u2010making in three groups of people: 1) those who knew of their risk and decided to have children; 2) those who had children before they knew of their risk, and 3) those who chose not to have children based on their risk. We discuss the delicate balance health care professionals and genetic counselors must maintain between the benefits of providing hope and the dangers of offering unrealistic expectations about the time in which scientific advances actually may occur.<\/jats:p>","DOI":"10.1007\/s10897-010-9312-2","type":"journal-article","created":{"date-parts":[[2010,8,23]],"date-time":"2010-08-23T18:40:04Z","timestamp":1282588804000},"page":"606-617","source":"Crossref","is-referenced-by-count":22,"title":["What Were You Thinking?: Individuals at Risk for Huntington Disease Talk About Having Children"],"prefix":"10.1002","volume":"19","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":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melinda M.","family":"Swenson","sequence":"additional","affiliation":[{"name":"Department of Family Health Nursing Indiana University School of Nursing Indianapolis IN USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon L.","family":"Sims","sequence":"additional","affiliation":[{"name":"Department of Family Health Nursing Indiana University School of Nursing Indianapolis IN USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joan M.","family":"Harrison","sequence":"additional","affiliation":[{"name":"Department of Neurology Emory University School of Nursing Atlanta GA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carol","family":"Moskowitz","sequence":"additional","affiliation":[{"name":"Department of Neurology Columbia University New York NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nonna","family":"Stepanov","sequence":"additional","affiliation":[{"name":"Ohio State University Dublin OH USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gregory W.","family":"Suter","sequence":"additional","affiliation":[{"name":"Hereditary Neurological Disease Centre Wichita KS USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beryl J.","family":"Westphal","sequence":"additional","affiliation":[{"name":"Department of Neurology Hennepin County Medical Center Minneapolis MN USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Huntington Study Group PHAROS Investigators and Coordinators","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2010,8,24]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-0004.2003.00093.x"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.33.9.737"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201774"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0619-3"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5200781"},{"key":"e_1_2_7_7_1","volume-title":"Huntington's disease: A disorder of families","author":"Folstein S. 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