Identifying Perceptions and Preferences of the General Public Concerning Universal Screening of Children for Familial Hypercholesterolaemia

Faye L. Bowman, Caron M. Molster, Karla J. Lister, Alicia T. Bauskis, Jacquie Garton-Smith, Alistair W. Vickery, Gerald F. Watts, Andrew C. Martin

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

Background/Aims: Familial hypercholesterolaemia (FH) is a common genetic disorder that, if untreated, predisposes individuals to premature coronary heart disease. As most individuals with FH remain undiagnosed, new approaches to detection are needed and should be considered a priority in public health genomics. Universal screening of children for FH has been proposed, and this study explores public perspectives on the acceptability of this approach. Methods: A one-day deliberative public forum was held in Perth, WA, Australia. Thirty randomly selected individuals were recruited, with self-reported sociodemographic characteristics used to obtain discursive representation. Participants were presented with information from a variety of perspectives and asked to discuss the information provided to identify points of consensus and disagreement. The data collected were analysed using thematic analysis. Results: Of the 17 participants at the forum, 16 deemed universal screening of children for FH to be acceptable. Fifteen of these 16 believed this was best performed at the time of an immunisation. Participants proposed a number of conditions that should be met to reduce the likelihood of unintended harm resulting from the screening process. Discussion/Conclusion: The outcomes of the forum suggest that establishing a universal screening programme for FH in childhood is acceptable to the general public in WA.

Original languageEnglish
JournalPublic Health Genomics
DOIs
Publication statusE-pub ahead of print - 22 Jul 2019

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Hyperlipoproteinemia Type II
Inborn Genetic Diseases
Genomics
Coronary Disease
Immunization
Public Health

Cite this

@article{c92883e177cd4b43af2d6db422946832,
title = "Identifying Perceptions and Preferences of the General Public Concerning Universal Screening of Children for Familial Hypercholesterolaemia",
abstract = "Background/Aims: Familial hypercholesterolaemia (FH) is a common genetic disorder that, if untreated, predisposes individuals to premature coronary heart disease. As most individuals with FH remain undiagnosed, new approaches to detection are needed and should be considered a priority in public health genomics. Universal screening of children for FH has been proposed, and this study explores public perspectives on the acceptability of this approach. Methods: A one-day deliberative public forum was held in Perth, WA, Australia. Thirty randomly selected individuals were recruited, with self-reported sociodemographic characteristics used to obtain discursive representation. Participants were presented with information from a variety of perspectives and asked to discuss the information provided to identify points of consensus and disagreement. The data collected were analysed using thematic analysis. Results: Of the 17 participants at the forum, 16 deemed universal screening of children for FH to be acceptable. Fifteen of these 16 believed this was best performed at the time of an immunisation. Participants proposed a number of conditions that should be met to reduce the likelihood of unintended harm resulting from the screening process. Discussion/Conclusion: The outcomes of the forum suggest that establishing a universal screening programme for FH in childhood is acceptable to the general public in WA.",
author = "Bowman, {Faye L.} and Molster, {Caron M.} and Lister, {Karla J.} and Bauskis, {Alicia T.} and Jacquie Garton-Smith and Vickery, {Alistair W.} and Watts, {Gerald F.} and Martin, {Andrew C.}",
year = "2019",
month = "7",
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doi = "10.1159/000501463",
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Identifying Perceptions and Preferences of the General Public Concerning Universal Screening of Children for Familial Hypercholesterolaemia. / Bowman, Faye L.; Molster, Caron M.; Lister, Karla J.; Bauskis, Alicia T.; Garton-Smith, Jacquie; Vickery, Alistair W.; Watts, Gerald F.; Martin, Andrew C.

In: Public Health Genomics, 22.07.2019.

Research output: Contribution to journalArticle

TY - JOUR

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AU - Bowman, Faye L.

AU - Molster, Caron M.

AU - Lister, Karla J.

AU - Bauskis, Alicia T.

AU - Garton-Smith, Jacquie

AU - Vickery, Alistair W.

AU - Watts, Gerald F.

AU - Martin, Andrew C.

PY - 2019/7/22

Y1 - 2019/7/22

N2 - Background/Aims: Familial hypercholesterolaemia (FH) is a common genetic disorder that, if untreated, predisposes individuals to premature coronary heart disease. As most individuals with FH remain undiagnosed, new approaches to detection are needed and should be considered a priority in public health genomics. Universal screening of children for FH has been proposed, and this study explores public perspectives on the acceptability of this approach. Methods: A one-day deliberative public forum was held in Perth, WA, Australia. Thirty randomly selected individuals were recruited, with self-reported sociodemographic characteristics used to obtain discursive representation. Participants were presented with information from a variety of perspectives and asked to discuss the information provided to identify points of consensus and disagreement. The data collected were analysed using thematic analysis. Results: Of the 17 participants at the forum, 16 deemed universal screening of children for FH to be acceptable. Fifteen of these 16 believed this was best performed at the time of an immunisation. Participants proposed a number of conditions that should be met to reduce the likelihood of unintended harm resulting from the screening process. Discussion/Conclusion: The outcomes of the forum suggest that establishing a universal screening programme for FH in childhood is acceptable to the general public in WA.

AB - Background/Aims: Familial hypercholesterolaemia (FH) is a common genetic disorder that, if untreated, predisposes individuals to premature coronary heart disease. As most individuals with FH remain undiagnosed, new approaches to detection are needed and should be considered a priority in public health genomics. Universal screening of children for FH has been proposed, and this study explores public perspectives on the acceptability of this approach. Methods: A one-day deliberative public forum was held in Perth, WA, Australia. Thirty randomly selected individuals were recruited, with self-reported sociodemographic characteristics used to obtain discursive representation. Participants were presented with information from a variety of perspectives and asked to discuss the information provided to identify points of consensus and disagreement. The data collected were analysed using thematic analysis. Results: Of the 17 participants at the forum, 16 deemed universal screening of children for FH to be acceptable. Fifteen of these 16 believed this was best performed at the time of an immunisation. Participants proposed a number of conditions that should be met to reduce the likelihood of unintended harm resulting from the screening process. Discussion/Conclusion: The outcomes of the forum suggest that establishing a universal screening programme for FH in childhood is acceptable to the general public in WA.

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