Abstract

A by-product of the Human Genome Project is the development of a wide array of genetic tests for treatable and untreatable inheritable conditions. The ethical implications of testing for children are especially difficult as parents' presumed right to know may be in direct conflict with the child's privacy, and family interests may appear to conflict with the best interests of the child. As part of a larger project on the ethical implications of the human genome project, we are developing a curriculum to assist primary care pediatricians to respond to families' questions about genetic testing. Here we analyzed arguments for and against genetic testing as presented in the pediatric, human genetics and health policy literature. The following criteria were selected as most important in determining whether a particular test is justifiable: age of patient, age of onset of disease, reliability of test, availability of treatment, benefits and burdens of treatment to patient and family.

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