The Ethics of Krabbe Newborn Screening

The experience of newborn screening for Krabbe disease in New York State demonstrates the ethical problems that arise when screening programs are expanded in the absence of true understanding of the diseases involved. In its 5 years of testing and millions of dollars in costs, there have been very few benefits, and the testing has uncovered potential cases of late-onset disease that raise difficult ethical questions in their own right. For these reasons, we argue that Krabbe screening should only be continued as a research project that includes the informed consent of parents to the testing.