Faye L Bowman1, Caron M Molster2, Karla J Lister2, Alicia T Bauskis2, Jacquie Garton-Smith3, Alistair W Vickery4, Gerald F Watts4,5, Andrew C Martin6,7. 1. Office of Population Health Genomics, Public and Aboriginal Health Division, Western Australian Department of Health, East Perth, Washington, Australia, faye.bowman@health.wa.gov.au. 2. Office of Population Health Genomics, Public and Aboriginal Health Division, Western Australian Department of Health, East Perth, Washington, Australia. 3. Health Networks, Clinical Excellence Division, Western Australian Department of Health, East Perth, Washington, Australia. 4. School of Medicine, Faculty of Health and Medical Sciences, University of Western Australia, Crawley, Washington, Australia. 5. Lipid Disorders Clinic, Cardiometabolic Service, Department of Cardiology, Royal Perth Hospital, Perth, Washington, Australia. 6. Department of General Paediatrics, Perth Children's Hospital, Perth, Washington, Australia. 7. School of Paediatrics and Child Health, Faculty of Health and Medical Sciences, University of Western Australia, Crawley, Washington, Australia.
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. The Author(s). Published by S. Karger AG, Basel.
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. The Author(s). Published by S. Karger AG, Basel.
Entities:
Keywords:
Deliberation; Familial hypercholesterolaemia; Public acceptability; Public perspectives; Universal screening of children
Authors: Hiromi Kawasaki; Satoko Yamasaki; Yuko Masuoka; Mika Iwasa; Susumu Fukita; Ryota Matsuyama Journal: Int J Environ Res Public Health Date: 2021-03-06 Impact factor: 3.390