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

Samantha Thomas, Dilinie Herbert, Alison Street, C Barnes, J Boal, Paul Alter Komesaroff

Research output: Contribution to journalArticleResearchpeer-review

Abstract

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.
Original languageEnglish
Pages (from-to)633 - 641
Number of pages9
JournalHaemophilia
Volume13
Issue number5
Publication statusPublished - 2007

Cite this

@article{bf6df079517c4554abb25dca4ebd1840,
title = "Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study",
abstract = "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.",
author = "Samantha Thomas and Dilinie Herbert and Alison Street and C Barnes and J Boal and Komesaroff, {Paul Alter}",
year = "2007",
language = "English",
volume = "13",
pages = "633 -- 641",
journal = "Haemophilia",
issn = "1351-8216",
publisher = "Wiley-Blackwell",
number = "5",

}

Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study. / Thomas, Samantha; Herbert, Dilinie; Street, Alison; Barnes, C; Boal, J; Komesaroff, Paul Alter.

In: Haemophilia, Vol. 13, No. 5, 2007, p. 633 - 641.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study

AU - Thomas, Samantha

AU - Herbert, Dilinie

AU - Street, Alison

AU - Barnes, C

AU - Boal, J

AU - Komesaroff, Paul Alter

PY - 2007

Y1 - 2007

N2 - 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.

AB - 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.

M3 - Article

VL - 13

SP - 633

EP - 641

JO - Haemophilia

JF - Haemophilia

SN - 1351-8216

IS - 5

ER -