Implementation of ironXS: a study of the acceptability and feasibility of genetic screening for hereditary hemochromatosis in high schools

• Published in: Clinical genetics Vol. 77; no. 3; pp. 241 - 248
• Main Authors: Delatycki, MB, Wolthuizen, M, Collins, V, Varley, E, Craven, J, Allen, KJ, Aitken, MA, Bond, L, Lockhart, PJ, Wilson, GR, Macciocca, I, Metcalfe, SA
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01-03-2010; Wiley-Blackwell
• Subjects: Adolescent; Age; Attitude; Biological and medical sciences; Cirrhosis; consent; Ferritin; Fundamental and applied biological sciences. Psychology; General aspects. Genetic counseling; Genetic disorders; Genetic screening; Genetic Testing; Genetics of eukaryotes. Biological and molecular evolution; Hemochromatosis; Hemochromatosis - diagnosis; Hemochromatosis - genetics; Heredity; Heterozygotes; Homozygotes; Humans; Inventories; Iron; Learning; Liver; Medical genetics; Medical sciences; Medical screening; Metabolic diseases; Metals (hemochromatosis...); Molecular and cellular biology; Morbidity; Other metabolic disorders; prevention; risk; Secondary school students; Students; Transferrin; Vocalization behavior; Human; Iron overload; Acceptance; Hemochromatosis; Metabolic diseases; Risk; Iron; Medical screening; Hereditary; consent; Enzymopathy; Implementation; School environment; Genetic disease; Prevention; Screening; Adolescent; Risk factor; Genetics; Feasibility
• ISSN: 0009-9163; 1399-0004
• DOI: 10.1111/j.1399-0004.2009.01308.x

Delatycki MB, Wolthuizen M, Collins V, Varley E, Craven J, Allen KJ, Aitken MA, Bond L, Lockhart PJ, Wilson GR, Macciocca I, Metcalfe SA. Implementation of ironXS: a study of the acceptability and feasibility of genetic screening for hereditary hemochromatosis in high schools.
Hereditary hemochromatosis (HH), most often due to HFE C282Y homozygosity, is an iron overload disorder that can result in severe morbidity including hepatic cirrhosis. Predisposition to HH is easily diagnosed and morbidity is preventable by maintaining normal body iron and thus calls have been made to introduce community screening. The current study has been designed to assess the acceptability and feasibility of HH screening in high schools. Students (mostly 15–16 years of age) watched a purpose‐designed DVD for education about HH. Those with parental consent were then offered cheek‐brush screening for C282Y. Students completed a questionnaire prior to screening. The program was offered to 9187 students at 32 schools and 3489 (38%) had screening. Nineteen C282Y homozygotes (1 in 183) and 376 heterozygotes (1 in 9.3) were identified. More than 90% of students answered each of five knowledge questions correctly. Eight homozygotes (42%) had elevated transferrin saturation, but only two (10.5%) had marginally elevated serum ferritin (SF). We have shown that genetic screening for HH can successfully be offered in the high school setting. Ongoing research in this study will answer questions about the impact of high school students learning that they are at risk of HH.