title: Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?
abstract: The genetic testing of minors within the direct-to-consumer (DTC) genetic testing (GT) context has been given relatively little attention. The issue of testing healthy children for diseases that would only develop in adulthood raises many important ethical, legal and social issues. As genetic testing is now available outside of the traditional health care system, often without even the intermediate of a health care professional, we surveyed 37 DTC GT companies regarding their policies for testing in children. Although the response rate is relatively low (35%, 13/37), our findings reveal that a clear majority of companies do perform genetic testing in minors. As such, companies testing for adult onset diseases are acting in contradiction of established professional guidelines, which state, among others, that, for predictive genetic testing, the availability of therapeutic or preventive measures is necessary for testing to be performed in asymptomatic minors. The community of stakeholders in children's health care and genetic testing should, therefore, decide which standards need to be upheld by DTC GT companies and ensure that these are met.
authors.affiliation: Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, Leuven, Belgium. heidi.howard@med.kuleuven.be
authors.forename: Heidi Carmen
authors.initials: HC
authors.lastname: Howard
authors.forename: Denise
authors.initials: D
authors.lastname: Avard
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
mesh_terms: D002648:Child; D002675:Child, Preschool; D004995:Ethics, Professional; D005817:Genetic Counseling / Q000941:ethics / Q000331:legislation & jurisprudence / Q000592:standards; D005820:Genetic Testing / Q000941:ethics* / Q000331:legislation & jurisprudence*; D019981:Health Care Sector / Q000331:legislation & jurisprudence* / Q000592:standards*; D006801:Humans; D011795:Surveys and Questionnaires