title: Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice.
abstract: This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.
authors.affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Shiri
authors.initials: S
authors.lastname: Shkedi-Rafid
authors.affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Angela
authors.initials: A
authors.lastname: Fenwick
authors.affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Sandi
authors.initials: S
authors.lastname: Dheensa
authors.affiliation: Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Anneke M
authors.initials: AM
authors.lastname: Lucassen
mesh_terms: D000293:Adolescent; D000328:Adult; D005006:Ethnicity / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D005820:Genetic Testing / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D055815:Young Adult