Genetic Testing: Ethical Issues

Testing in children raises a different set of risks and issues. Adults are able to choose for themselves about genetic testing after hearing the relative advantages and risks. Children, however, must rely on their parents to decide for them. On the one hand, deciding to test children to diagnose a disease seems appropriate in most situations, particularly when a treatment can be provided. On the other hand, there is disagreement about testing children for disorders with adult onset and for which there is no intervention. In this situation, respect for the child's own decision (autonomy) and preserving privacy are ethical arguments for waiting to offer the genetic test. Upon reaching adulthood, individuals may then choose whether to learn their own genetic information.

Genetic testing requires additional considerations when done in the prenatal setting. In this case, parents are deciding to obtain genetic information about a third party, the developing fetus. In cases where there is no available medical therapy for a diagnosed genetic condition, the availability of limited options results in tough ethical choices for parents. The options may range from continuing the pregnancy, preparing for a child with special medical needs, or terminating the pregnancy. To make these decisions, prospective parents need clear information regarding the meaning of test results. Issues to consider include the predictive value of the test, the likely severity and age of onset of the predicted disorder, and the probability that the genetic alteration detected will actually result in a disorder.