Volume 73 Number 3 May 2006	back to contents

Address all correspondence to Rosamond Rhodes, Ph.D., Professor of Medical Education and Director, Bioethics Education, Box 1108, Mount Sinai School of Medicine, One East 100th Street, New York, NY 10029.

Presented at the Mount Sinai Medical Conference on Pediatric Ethics, at Mount Sinai School of Medicine, New York, NY, on January 30, 2004, and updated as of December 2005.

Abstract

The genetics community has developed guidelines recommending that predictive testing of children for adult-onset genetic conditions should be withheld. Genetics policy makers have maintained that their restriction of predictive testing of children is justified because (a) it shows respect for children's autonomy and confidentiality, (b) it protects children from harm, and (c) there are no compensating benefits of testing when no effective treatment for the condition is available. Although this approach seems reasonable on its face, a careful examination of the arguments shows that each of the three justifications for restricting testing is flawed. Specifically, I argue that the consensus position is not justified because (a) the appeal to autonomy in this context is baseless and confused, (b) there is no evidence of harm from disclosure, and (c) the claim that there are no benefits from early testing is based on an unjustifiably narrow view of benefits that ignores significant advantages that testing actually provides. Ultimately, for reasons that pediatricians usually consider important, I argue that pediatricians should encourage parents to pursue genetic testing of children at a young age.

Key Words

Genetic testing, predictive testing, adult-onset genetic diseases, genetic diseases.

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