Carrier testing in haemophilia A and B: adult carriers’ and their partners’ experiences and their views on the testing of young females
Identifieur interne : 000614 ( Main/Exploration ); précédent : 000613; suivant : 000615Carrier testing in haemophilia A and B: adult carriers’ and their partners’ experiences and their views on the testing of young females
Auteurs : N. F. Dunn [Royaume-Uni] ; R. Miller [Royaume-Uni] ; A. Griffioen [Royaume-Uni] ; C. A. Lee [Royaume-Uni]Source :
- Haemophilia [ 1351-8216 ] ; 2008-05.
English descriptors
- KwdEn :
Abstract
Summary. This is a descriptive study, which aims to report adult carriers’ and their husbands/partners’ 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 0–9 years, 44% (38/87) 10–15 years and 16% (14/87) ≥16 years. Respondents aged 18–39 years were more likely to be in favour of testing <2 years. 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.
Url:
DOI: 10.1111/j.1365-2516.2007.01649.x
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This is a descriptive study, which aims to report adult carriers’ and their husbands/partners’ 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 0–9 years, 44% (38/87) 10–15 years and 16% (14/87) ≥16 years. Respondents aged 18–39 years were more likely to be in favour of testing <2 years. 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.</div></front></TEI><affiliations><list><country><li>Royaume-Uni</li></country><region><li>Angleterre</li><li>Grand Londres</li></region><settlement><li>Londres</li></settlement></list><tree><country name="Royaume-Uni"><region name="Angleterre"><name sortKey="Dunn, N F" sort="Dunn, N F" uniqKey="Dunn N" first="N. F." last="Dunn">N. F. Dunn</name></region><name sortKey="Griffioen, A" sort="Griffioen, A" uniqKey="Griffioen A" first="A." last="Griffioen">A. Griffioen</name><name sortKey="Lee, C A" sort="Lee, C A" uniqKey="Lee C" first="C. A." last="Lee">C. A. Lee</name><name sortKey="Miller, R" sort="Miller, R" uniqKey="Miller R" first="R." last="Miller">R. Miller</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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