Davis bases her argument against testing children for untreatable, late onset genetic diseases (hereafter referred to as “testing”) on the fact that testing is a violation of a child’s right to an open future. Davis feels that while parents ...
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...is’ recommendation that the information be kept in a separate area of the patient file, secret from both the parents and patient until reproductive or disease onset issues emerge.
Perhaps the blind prophet Tiresias said it best in Sophocles’ tragedy, Oedipus the King, when the guilty but oblivious Oedipus demanded to know who murdered King Laius: “It is but sorrow to be wise when wisdom profits not.” In the absence of useful medical interventions, it is best to not perform childhood or prenatal genetic screening for late onset diseases. We are obligated to protect their rights to privacy, to choose whether to be tested, and to open futures. When dealing with such emotionally loaded medical information, we must protect children’s freedom to choose what information they share with their parents, and more importantly, what information they know about themselves.
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