{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T22:49:43Z","timestamp":1776379783055,"version":"3.51.2"},"reference-count":26,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2008,2,13]],"date-time":"2008-02-13T00:00:00Z","timestamp":1202860800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2008,5]]},"abstract":"<jats:p><jats:bold>Summary.\u2002<\/jats:bold> This is a descriptive study, which aims to report adult carriers\u2019 and their husbands\/partners\u2019 experiences of carrier diagnosis and their views as to how these issues should be handled for the next generation. Following an initial pilot, 105 carriers and husbands\/partners responded to a postal questionnaire. Most of the adult carriers had been tested because either they or their parents wanted to know their carrier status or they had a son diagnosed with haemophilia. The respondents agreed that the main reasons for testing young potential carriers should be either a family history of severe haemophilia or that the young person or her parents wanted to know her status. Forty per cent (35\/87) believed the earliest age for carrier testing should be 0\u20139\u2003years, 44% (38\/87) 10\u201315\u2003years and 16% (14\/87) \u226516\u2003years. Respondents aged 18\u201339\u2003years were more likely to be in favour of testing &lt;2\u2003years. If parents and teenagers disagreed, the majority of parents thought that a test should not be forced, consent refused or results withheld. Genetic counselling provides an important opportunity for parents, who want a very early genetic test, to explore their motivations and balance their desire to prepare and protect their daughter with her right to decide as a teenager.<\/jats:p>","DOI":"10.1111\/j.1365-2516.2007.01649.x","type":"journal-article","created":{"date-parts":[[2008,2,13]],"date-time":"2008-02-13T20:20:10Z","timestamp":1202934010000},"page":"584-592","source":"Crossref","is-referenced-by-count":42,"title":["Carrier testing in haemophilia A and B: adult carriers\u2019 and their partners\u2019 experiences and their views on the testing of young females"],"prefix":"10.1111","volume":"14","author":[{"given":"N. 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