The benefits and harms of genetic testing need to be carefully evaluated before proceeding with testing in children who may not be able to appreciate the implications of such results. When genetic testing directly impacts medical management or treatment for a child with symptoms or clinical features of a condition, the benefits of testing are clear and the well-being of the child is being promoted. However, when genetic testing does not impact medical management, or the condition in question will occur in adulthood, the implications of testing become more complex and the benefits become less clear. The American College of Medical Genetics and the American Society of Human Genetics wrote "Points to Consider: Ethical, Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents."20 The recommendations are:
1. Timely medical benefit to the child should be the primary justification for genetic testing in children and adolescents.
2. Substantial psychological benefits to the competent adolescent also may be a justification for genetic testing.
3. If the medical or psychological benefits of a genetic test will not accrue until adulthood, as in the case of carrier status or adult-onset diseases, genetic testing generally should be deferred.
4. If the balance of benefits and harms is uncertain, the provider should respect the decision of the competent adolescent and his or her family.
5. Testing should be discouraged when the provider determines that the potential harms of genetic testing in children and adolescents outweigh the potential benefits.
Education and counseling for the parents and the child, at an appropriate level, should be provided. The benefits and harms related to medical issues, psychosocial issues, and reproductive issues need to be presented and discussed. Children and certainly adolescents have decision-making capacity. The child's competence and wishes should be assessed prior to genetic testing and carefully balanced with parental authority. This is especially true for adolescents who can articulate a specific opinion that differs from that of his or her parents.20 Assent from the child or adolescent should be obtained in addition to informed consent from the parents.
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