Newborn Genetic Screening

Throughout the United States, and in many other countries around the world, newborns are tested within the first few days to weeks of life for a varying array of metabolic disorders. Until recently, newborns were typically screened for only a handful of disorders, but recent technological advances and new knowledge about genetics have led to pressure for greatly expanded screening. At first glance, newborn screening might seem unremarkable. Much of medical practice is devoted to the early detection of disease to allow the delivery of effective interventions, and new developments are often received enthusiastically. But newborn screening programs have several features that individually and collectively pose particular ethical challenges.

All U.S. states require that newborns be screened, either prior to discharge or, if delivered outside a healthcare facility, within the first two to three days of life (AAP). Maryland, Wyoming, and, for some but not all tests, Georgia and Massachusetts require that parents give their permission for screening, though many states do permit parents to refuse screening (generally for religious reasons). This option may be difficult to exercise in practice, however, since few states require that parents even be told that screening is occurring, much less that they have a right to refuse. Thus, one of more remarkable aspects of newborn screening is that parents are not even nominally part of the decision-making process for their new infants (AAP; Paul; Clayton).

Those who argue against either notifying parents or seeking their permission reason that all children should be screened, and it would thus be a waste of money and effort to talk with parents (Cunningham). Proponents of mandatory screening argue that most parents would agree to screening, but that they might be unduly worried if they knew about the test (Cunningham). They assert further that parents who refuse would be harming their own children. These arguments raise two separate issues: (1) the justifiability of excluding parents, and (2) the characteristics of newborn screening programs (and the disorders they seek).

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