{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,20]],"date-time":"2026-10-20T17:27:34Z","timestamp":1792517254822,"version":"4.5.0"},"reference-count":27,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2014,7,26]],"date-time":"2014-07-26T00:00:00Z","timestamp":1406332800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000589","name":"Chief Scientist Office","doi-asserted-by":"publisher","award":["PDF\/10\/06"],"award-info":[{"award-number":["PDF\/10\/06"]}],"id":[{"id":"10.13039\/501100000589","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2015,6]]},"abstract":"A growing number of young people (YP<\/jats:styled-content>) are requesting predictive testing (PT<\/jats:styled-content>) for Huntington's disease (HD<\/jats:styled-content>), yet there is little research in this area. The aim of this study was to explore YP's experiences of PT for HD<\/jats:styled-content>, the impact of their result and any gaps in information or support. In\u2010depth interviews were conducted with YP who sought PT for HD<\/jats:styled-content> from nationally funded Genetics Services. Participants were recruited through the Grampian Genetics Service or Scottish Huntington's Association. Twelve female participants aged 17\u201326 years were recruited (seven below 20 years). Pre\u2010 and post\u2010test interviews were conducted where possible. A qualitative thematic analysis suggests three main testing experiences, regardless of test result. Testing may be: (i) a journey of empowerment, (ii) an ambivalent process or (iii) a poor experience. In pre\u2010test counselling, gaps in emotional support were highlighted. The post\u2010test period was particularly difficult if there were unanticipated changes in family dynamics or an individual's result contradicted what they expected \u2018deep down\u2019. YP's experiences of PT<\/jats:styled-content> for HD<\/jats:styled-content> are generally similar to those of adults, but testing may help or interfere with key issues related to this age and stage. Implications for clinical practice are outlined.<\/jats:p>","DOI":"10.1111\/cge.12439","type":"journal-article","created":{"date-parts":[[2014,5,30]],"date-time":"2014-05-30T13:04:50Z","timestamp":1401455090000},"page":"563-569","source":"Crossref","is-referenced-by-count":25,"title":["Help or hindrance: young people's experiences of predictive testing for Huntington's disease"],"prefix":"10.1111","volume":"87","author":[{"given":"K.","family":"Forrest Keenan","sequence":"first","affiliation":[{"name":"Health Services Research Unit University of Aberdeen Aberdeen AB25 2ZD UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"McKee","sequence":"additional","affiliation":[{"name":"Health Services Research Unit University of Aberdeen Aberdeen AB25 2ZD UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Z.","family":"Miedzybrodzka","sequence":"additional","affiliation":[{"name":"Medical Genetics University of Aberdeen Aberdeen AB25 2ZD UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2014,7,26]]},"reference":[{"key":"e_1_2_8_2_1","volume-title":"Huntington's disease: the facts","author":"Quarrell O","year":"2008"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.2217\/nmt.11.85"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2008.142"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.brainresbull.2006.10.023"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2012.01900.x"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320420417"},{"key":"e_1_2_8_8_1","unstructured":"TavernerN.UK Huntington's Disease Predictive Test Consortium Figures. 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