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April 12, 1995

Genetic Testing for Children and Adolescents

Author Affiliations

Cupertino, Calif

JAMA. 1995;273(14):1089. doi:10.1001/jama.1995.03520380025018

To the Editor.  —In the thought-provoking article by Dr Wertz and colleagues,1 they propose that where testing has no health benefits, a minor of reproductive age should be the primary decision maker regarding genetic testing because he or she possesses the "negative right" of deciding not to know.1(p879) This downplays the moral and legal obligation to protect an innocent bystander.Where the carrier is healthy, parents may reason there is no need to inform a minor child of a familial genetic problem. In a book, Kolker and I report interviewing a mother who spent many hours a week taking a child with an unbalanced translocation on a weekly round of specialists.2(p140) When asked when she planned to inform her healthy son that he carried the same balanced translocation as herself, she hesitated, then responded, "Well, I guess before he marries—or perhaps goes off to college." We then

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