Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study

Thomas, S., Herbert, D., Street, A., Barnes, C., Boal, J. and Komesaroff, P. 2007, Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study, Haemophilia, vol. 13, no. 5, pp. 633-641, doi: 10.1111/j.1365-2516.2007.01454.x.

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Title Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study
Author(s) Thomas, S.ORCID iD for Thomas, S.
Herbert, D.
Street, A.
Barnes, C.
Boal, J.
Komesaroff, P.
Journal name Haemophilia
Volume number 13
Issue number 5
Start page 633
End page 641
Total pages 9
Publisher Wiley
Place of publication London, Eng.
Publication date 2007-09
ISSN 1351-8216
Keyword(s) Science & Technology
Life Sciences & Biomedicine
attitudes towards genetic testing
experiences of haemophilia
qualitative research
x-linked conditions
Summary Widespread genetic testing for haemophilia has recently been introduced in Victoria, Australia. While attitudes towards predictive testing have been studied in other conditions, such as cancer, there is limited knowledge about the attitudes of members of the haemophilia community towards predictive testing. This study aimed at exploring attitudes towards, and beliefs about, genetic testing amongst members of the haemophilia community in Victoria prior to the widespread introduction of testing. The study was qualitative and descriptive. In-depth face to face interviews were held with a sample of 39 individuals, including men with haemophilia, female carriers and family members. Data were analysed thematically using cross-case analysis techniques. There was considerable knowledge about the proposed introduction of widespread genetic testing. However, not everyone thought that testing was accessible or user friendly, and there was confusion about who needed to be tested. Most thought that testing was necessary for adolescent girls to determine carrier status to help prepare families for a child with haemophilia, rather than leading them to choose to terminate a pregnancy or not to have children. A minority of women stated that if there was a history of inhibitors in a family then a termination might be considered. The study revealed strong religious beliefs among those studied, which may have influenced attitudes and approaches towards testing. Further investigation is needed into how people with a possible haemophilia genotype negotiate decisions about their further identification, and how this knowledge is placed within cultural, religious and family contexts.
Language eng
DOI 10.1111/j.1365-2516.2007.01454.x
Field of Research 111799 Public Health and Health Services not elsewhere classified
Socio Economic Objective 920499 Public Health (excl. Specific Population Health) not elsewhere classified
HERDC Research category C1.1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2007, The Authors
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Document type: Journal Article
Collections: Faculty of Health
School of Health and Social Development
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