{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T03:27:32Z","timestamp":1785554852734,"version":"3.56.0"},"reference-count":15,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2018,2,20]],"date-time":"2018-02-20T00:00:00Z","timestamp":1519084800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2018,2,20]],"date-time":"2018-02-20T00:00:00Z","timestamp":1519084800000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"funder":[{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1TR000058"],"award-info":[{"award-number":["UL1TR000058"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2018,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Huntington disease (HD) is a progressive neurodegenerative disorder. Presymptomatic genetic testing allows at\u2010risk individuals to clarify their risk status. Understanding the characteristics and motivations of individuals seeking HD presymptomatic genetic testing better equips genetic counselors and other healthcare professionals to provide comprehensive and personalized care. The aims of this study were to (1) determine whether the average age when individuals seek presymptomatic HD genetic testing has decreased over time, (2) assess motivations for seeking testing, (3) explore whether there is a relationship between age and motivations, and (4) explore genetic counselors\u2019 perceptions of the shift in age. Data from the US HD testing centers (<jats:italic>N<\/jats:italic>\u2009=\u20094) were analyzed. A small but statistically significant decrease in age of individuals seeking presymptomatic testing was observed (<jats:italic>p<\/jats:italic>\u2009=\u20090.045). HD community members (<jats:italic>N<\/jats:italic>\u2009=\u200977) were surveyed regarding presymptomatic testing motivations. Younger individuals were more likely than older individuals to cite \u201cTo learn whether or not you would develop HD\u201d and \u201cTo make choices about further education or a career\u201d compared to older individuals (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05). Conversely, older individuals more frequently cited \u201cTo give children a better idea of their risk\u201d (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.002). Sixteen percent of genetic counselors surveyed (6\/37) perceived a change in age of testing. All of these respondents had provided HD testing for ten or more years and anecdotally believed the age at testing has decreased over time. Study results help providers personalize counseling based on patient's age and serve as a starting point for more research into the relationship between age at testing and motivations for testing.<\/jats:p>","DOI":"10.1007\/s10897-018-0233-9","type":"journal-article","created":{"date-parts":[[2018,2,19]],"date-time":"2018-02-19T23:04:23Z","timestamp":1519081463000},"page":"1157-1166","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["The Changing Age of Individuals Seeking Presymptomatic Genetic Testing for Huntington Disease"],"prefix":"10.1002","volume":"27","author":[{"given":"Melissa A.","family":"Holman","sequence":"first","affiliation":[{"name":"Department of Human and Molecular Genetics Virginia Commonwealth University Richmond VA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Quillin","sequence":"additional","affiliation":[{"name":"Department of Human and Molecular Genetics Virginia Commonwealth University Richmond VA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Timothy P.","family":"York","sequence":"additional","affiliation":[{"name":"Department of Human and Molecular Genetics Virginia Commonwealth University Richmond VA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia M.","family":"Testa","sequence":"additional","affiliation":[{"name":"Parkinson's and Movement Disorders Center Virginia Commonwealth University Richmond VA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ami R.","family":"Rosen","sequence":"additional","affiliation":[{"name":"Department of Human Genetics and Neurology Emory University Atlanta GA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Virginia W.","family":"Norris","sequence":"additional","affiliation":[{"name":"Parkinson's and Movement Disorders Center Virginia Commonwealth University Richmond VA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,2,20]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(97)00061-X"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2010.12.001"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.31720"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.25717"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2014.03.017"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-010-9312-2"},{"key":"e_1_2_11_8_1","doi-asserted-by":"crossref","unstructured":"Quarrell O. O'Donovan K. L. Bandmann O. &Strong M.(2012).The prevalence of juvenile Huntington's disease: a review of the literature and meta\u2010analysis.PLoS Currents 4.","DOI":"10.1371\/4f8606b742ef3"},{"key":"e_1_2_11_9_1","volume-title":"R: a language and environment for statistical computing.","author":"R Core Team.","year":"2015"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.23685"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1089\/gtmb.2011.0007"},{"key":"e_1_2_11_12_1","doi-asserted-by":"crossref","unstructured":"Sparbel K. Driessmack M. Williams J. Schutte D. Tripp\u2010Reimer T. McGonigal\u2010Kenney M. et al. (2008).Experiences of teens living in the shadow of Huntington disease.Journal of Genetic Counseling 17.","DOI":"10.1007\/s10897-008-9151-6"},{"key":"e_1_2_11_13_1","doi-asserted-by":"crossref","unstructured":"Suffham T. &MacMillan J.(2014).Huntington disease: who seeks presymptomatic genetic testing why and what are the outcomes?Journal of Genetic Counseling.","DOI":"10.1007\/s10897-013-9678-z"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(03)00155-2"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.gim.0000245633.97952.f1"},{"key":"e_1_2_11_16_1","unstructured":"Warby S. Graham R. &Hayden M.(2010).Gene reviews: Huntington disease. 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