Ethical and policy issues raised by heterozygote carrier identification and predictive genetic testing of adolescents

Current professional recommendations discourage health care providers from providing heterozygote carrier testing and predictive genetic testing for adult-onset conditions to minors. These recommendations are based on theoretical concerns that the harms outweigh the benefits. Although empirical data are scant, the emerging evidence suggests that the risks of harms are less than predicted and that there may be some significant benefits for testing adolescents, particularly when the adolescent and parent(s) agree. To ethically respond to requests for genetic testing of adolescents, pediatricians should evaluate the goals of testing, the familial implications of the results, and whose consent is needed.