Genetic service providers' practices and attitudes regarding adolescent genetic testing for carrier status

Abstract

PURPOSE: To characterize current practices and attitudes regarding testing adolescents for carrier status. METHODS: Electronic survey of 294 genetic service providers from various professional organizations. Testing for predisposition and presymptomatic conditions was excluded from this study. RESULTS: Eighty-three percent of providers had received requests to test adolescents for carrier status. Of these, 84% have performed testing. Providers cited adolescent desire, sexual activity/pregnancy, and adolescent competence as the main reasons for testing. Some providers who performed testing found the current guidelines unhelpful. CONCLUSION: Testing adolescents for carrier status is common for at least some conditions. The guidelines regarding genetic testing of adolescents may need to be updated to reflect current concerns and practices. ©2007The American College of Medical Genetics.