{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T13:13:10Z","timestamp":1792761190651,"version":"4.5.0"},"reference-count":18,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2017,11,2]],"date-time":"2017-11-02T00:00:00Z","timestamp":1509580800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt B"],"published-print":{"date-parts":[[2018,1]]},"abstract":"<jats:sec><jats:label\/><jats:p>A consistent feature of predictive testing guidelines for Huntington's disease (HD) is the recommendation not to undertake predictive tests on those &lt;\u200918 years. Exceptions are made but the extent of, and reasons for, deviation from the guidelines are unknown. The UK Huntington's Prediction Consortium has collected data annually on predictive tests undertaken from the 23 UK genetic centers. DNA analysis for HD in the Netherlands is centralized in the Laboratory for Diagnostic Genome Analysis in Leiden. In the UK, 60 tests were performed on minors between 1994 and 2015 representing 0.63% of the total number of tests performed. In the Netherlands, 23 tests were performed on minors between 1997 and 2016. The majority of the tests were performed on those aged 16 and 17 years for both countries (23% and 57% for the UK, and 26% and 57% for the Netherlands). Data on the reasons for testing were identified for 36 UK and 22 Netherlands cases and included: close to the age of 18 years, pregnancy, currently in local authority care and likely to have less support available after 18 years, person never having the capacity to consent and other miscellaneous reasons. This study documents the extent of HD testing of minors in the UK and the Netherlands and suggests that, in general, the recommendation is being followed. We provide some empirical evidence as to reasons why clinicians have departed from the recommendation. We do not advise changing the recommendation but suggest that testing of minors continues to be monitored.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ajmg.b.32582","type":"journal-article","created":{"date-parts":[[2017,11,2]],"date-time":"2017-11-02T15:50:39Z","timestamp":1509637839000},"page":"35-39","source":"Crossref","is-referenced-by-count":2,"title":["Predictive testing of minors for Huntington's disease: The UK and Netherlands experiences"],"prefix":"10.1002","volume":"177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3818-9051","authenticated-orcid":false,"given":"Oliver W.","family":"Quarrell","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics Sheffield Children's Hospital Northern General Hospital Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angus J.","family":"Clarke","sequence":"additional","affiliation":[{"name":"Division of Cancer and Genetics School of Medicine Cardiff University Cardiff UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cecilia","family":"Compton","sequence":"additional","affiliation":[{"name":"University of London and St George's University Hospitals NHS Foundation Trust Institute of Molecular and Clinical Sciences London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine E.M.","family":"de Die\u2010Smulders","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics Maastricht Universitair Medisch Centrum Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alan","family":"Fryer","sequence":"additional","affiliation":[{"name":"Liverpool Women's Hospital NHS Foundation Trust Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sian","family":"Jenkins","sequence":"additional","affiliation":[{"name":"Department Clinical Genetics University Hospital of Southampton Oxford Eye Hospital Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nayana","family":"Lahiri","sequence":"additional","affiliation":[{"name":"University of London and St. George's Hospital Institute of Molecular and Clinical Sciences London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rhona","family":"MacLeod","sequence":"additional","affiliation":[{"name":"Manchester Centre for Genomic Medicine St Mary's Hospital, Central Manchester University Hospitals NHS Foundation Trust Manchester Academic Health Sciences Center Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zosia","family":"Miedzybrodzka","sequence":"additional","affiliation":[{"name":"School of Medicine Medical Sciences and Nutrition University of Aberdeen Aberdeen UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick J.","family":"Morrison","sequence":"additional","affiliation":[{"name":"Centre for Cancer Research and Cell Biology Queens University Belfast Belfast UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Musgrave","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics Yorkshire Regional Genetics Service Chapel Allerton Hospital Leeds UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"O'Driscoll","sequence":"additional","affiliation":[{"name":"West midlands Regional Clinical genetics service and Birmingham Health Partners Birmingham Women's Hospital NHS Foundation Trust Birmingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Strong","sequence":"additional","affiliation":[{"name":"School of Health and Related Research University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martine J.","family":"van Belzen","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics Leids Universitair Medisch Centrum Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sascha","family":"Vermeer","sequence":"additional","affiliation":[{"name":"Radboud University Medical Center Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Corien C.","family":"Verschuuren\u2010Bemelmans","sequence":"additional","affiliation":[{"name":"Department of Genetics Universitair Medical Centre Groningen University of Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emilia K.","family":"Bijlsma","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics Leids Universitair Medisch Centrum Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,11,2]]},"reference":[{"key":"e_1_2_5_2_1","unstructured":"Artikel 447 Wet Geneeskundige Behandelingsovereenkomst (WGBO)1995. The Act on the Medical Treatment Agreement in the Dutch Law."},{"key":"e_1_2_5_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2016.36"},{"key":"e_1_2_5_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.33.11.912"},{"key":"e_1_2_5_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2006.00692.x"},{"key":"e_1_2_5_6_1","doi-asserted-by":"crossref","first-page":"527","DOI":"10.1136\/medethics-2012-100598","article-title":"Commentary on predictive genetic testing of minors: By Mand et al","volume":"38","author":"Clarke A. J.","year":"2012","journal-title":"Journal of Medical Ethics"},{"key":"e_1_2_5_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.31720"},{"key":"e_1_2_5_8_1","unstructured":"General Medical Council.2007. Paragraph 25www.gmc\u2010uk.org\/guidance\/ethical_guidance\/children_guidance_index.asp."},{"key":"e_1_2_5_9_1","doi-asserted-by":"crossref","first-page":"1533","DOI":"10.1212\/WNL.44.8.1533","article-title":"Guidelines for the molecular genetics predictive test in Huntington's disease","volume":"44","year":"1994","journal-title":"Neurology"},{"key":"e_1_2_5_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.31.7.555"},{"key":"e_1_2_5_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2012.01900.x"},{"key":"e_1_2_5_12_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2011-100055"},{"key":"e_1_2_5_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2013.15"},{"key":"e_1_2_5_14_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198803033180903"},{"key":"e_1_2_5_15_1","first-page":"151","volume-title":"Juvenile Huntington's Disease and other trinucleotide repeat disorders","author":"Nance M. A","year":"2009"},{"key":"e_1_2_5_16_1","doi-asserted-by":"publisher","DOI":"10.2217\/nmt.13.18"},{"key":"e_1_2_5_17_1","doi-asserted-by":"crossref","first-page":"218","DOI":"10.1016\/S0140-6736(07)60111-1","article-title":"Huntington's disease","volume":"389","author":"Walker F. O.","year":"2007","journal-title":"Lancet"},{"key":"e_1_2_5_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.27.1.34"},{"key":"e_1_2_5_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/0022-510X(89)90243-8"}],"container-title":["American Journal of Medical Genetics Part B: Neuropsychiatric Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fajmg.b.32582","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.b.32582","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,29]],"date-time":"2023-09-29T16:27:51Z","timestamp":1696004871000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.b.32582"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,11,2]]},"references-count":18,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2018,1]]}},"alternative-id":["10.1002\/ajmg.b.32582"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.b.32582","archive":["Portico"],"relation":{},"ISSN":["1552-4841","1552-485X"],"issn-type":[{"value":"1552-4841","type":"print"},{"value":"1552-485X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,11,2]]}}}