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September 21, 1994

Genetic Testing for Children and AdolescentsWho Decides?

Author Affiliations

From The Shriver Center for Mental Retardation, Inc, Waltham, Mass (Drs Wertz and Reilly), and the California Pacific Medical Center, San Francisco (Dr Fanos). The Shriver Center operates a Tay-Sachs Disease and Lysosomal Disorder Testing Laboratory. It tests samples from children. Dr Reilly owns stock in Genzyme, a company that owns a majority interest in Integrated Genetics, which operates genetic testing laboratories that test samples from children. He has a consulting contract with Integrated Genetics and is a consultant to Genica, Inc, a privately held company that offers genetic testing to children, among others.

JAMA. 1994;272(11):875-881. doi:10.1001/jama.1994.03520110055029

In the future there is likely to be a large array of DNA-based tests to diagnose single-gene disorders and to identify predispositions to genetically influenced disorders. This article focuses on ethical, legal, and psychological implications of testing healthy children and adolescents for such disorders. Testing may offer medical or psychological benefits but may harm parent-child bonds or the child's self-concept. Clinicians may encounter situations where they must weigh the child's or adolescent's wishes against wishes of parents. We examine the legal history and current status of minors as health care consumers; psychosocial research on their maturity to make choices; impact of testing on intrafamilial relationships; views of national commissions on appropriate ages of assent and full informed consent; ethical and legal requirements for competence in children and adolescents; and disclosure of genetic information. We propose guidelines for predictive genetic testing and counseling of children and discuss risks and benefits of testing.

(JAMA. 1994;272:875-881)