The Disadvantages of Genetic Testing on Children Discussed in Dena Davis' Book Genetic Dilemmas

In chapter four of her book Genetic Dilemmas, Dena Davis asserts that it is unethical for parents to subject their children to genetic testing for the markers of adult-onset genetic diseases because it places an unfair constraint on a child’s right to an open future. It both removes the child’s ability to choose whether to be tested as an adult and has the potential to negatively alter the overall trajectory of their lives. While the current consensus amongst medical professionals is that such testing should be prohibited (Davis, _____), many concerned parents correctly point out that discouraging such testing creates a conflict of interests between the “beneficence model of patient care and the rights of parents to their own autonomy” (Davis, 75). The availability of commercial online and mail-order genetic testing kits further exacerbates this dilemma by enabling these dissenting parents to obtain test results for their children. Davis ultimately makes a convincing argument that “parental requests for genetic information about their children, when they have no immediate relevance to medical intervention or disease prevention, should generally be resisted” (Davis, 87). This paper seeks to demonstrate that in the case of testing for incurable, late onset genetic diseases, protecting the rights and interests of the child should take precedence over parental autonomy, and that there is a marked need for tighter regulation of commercial genetic testing in order to protect these rights.

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 ...

... middle of paper ...

...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.