ASHG/ACMG REPORT Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents

Rapid developments in genetic knowledge and technologies increase the ability to test asymptomatic children for late-onset diseases, disease susceptibilities, and carrier status. These developments raise ethical and legal issues that focus on the interests of children and their parents. Although parents are presumed to promote the well-being of their children, a request for a genetic test may have negative implications for children, and the health-care provider must be prepared to acknowledge and discuss such issues with families. This report is grounded in several social concepts: First, the primary goal of genetic testing should be to promote the well-being of the child. Second, the recognition that children are part of a network of family relationships supports an approach to potential conflicts that is not adversarial but, rather, emphasizes a deliberative process that seeks to promote the child's well-being within this context. Third, as children grow through successive stages of cognitive and moral development, parents and professionals should be attentive to the child's increasing interest and ability to participate in decisions about his or her own welfare. Counseling and communication with the child and family about genetic testing should include the following components: (1) assessment of the significance of the