Linked Life Data

17880455

Source:http://linkedlifedata.com/resource/pubmed/id/17880455

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
5
pubmed:dateCreated
2007-9-20
pubmed:abstractText
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.
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Sep
pubmed:issn
1351-8216
pubmed:author
pubmed:issnType
Print
pubmed:volume
13
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
633-41
pubmed:dateRevised
2009-11-19
pubmed:meshHeading
pubmed:year
2007
pubmed:articleTitle
Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study.
pubmed:affiliation
Centre for Ethics in Medicine and Society, Faculty of Medicine, Nursing and Health Sciences, Monash Medical School, Monash University, Melbourne, Victoria, Australia. samantha.thomas@med.monash.edu.au
pubmed:publicationType
Journal Article