title: Why test children for adult-onset genetic diseases?
abstract: The genetics community has developed guidelines recommending that predictive testing of children for adult-onset genetic conditions should be withheld. Genetics policy makers have maintained that their restriction of predictive testing of children is justified because (a) it shows respect for children's autonomy and confidentiality, (b) it protects children from harm, and (c) there are no compensating benefits of testing when no effective treatment for the condition is available. Although this approach seems reasonable on its face, a careful examination of the arguments shows that each of the three justifications for restricting testing is flawed. Specifically, I argue that the consensus position is not justified because (a) the appeal to autonomy in this context is baseless and confused, (b) there is no evidence of harm from disclosure, and (c) the claim that there are no benefits from early testing is based on an unjustifiably narrow view of benefits that ignores significant advantages that testing actually provides. Ultimately, for reasons that pediatricians usually consider important, I argue that pediatricians should encourage parents to pursue genetic testing of children at a young age.
authors.affiliation: Bioethics Education, Mount Sinai School of Medicine, New York, NY 10029, USA.
authors.forename: Rosamond
authors.initials: R
authors.lastname: Rhodes
mesh_terms: D000328:Adult; D017668:Age of Onset; D002648:Child; D003219:Confidentiality; D032921:Consensus; D003657:Decision Making; D005190:Family; D030342:Genetic Diseases, Inborn / Q000175:diagnosis*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D033242:Minors / Q000523:psychology; D033282:Parental Consent / Q000941:ethics*; D026684:Personal Autonomy; D017410:Practice Guidelines as Topic