Mandatory PKU screening: the other side of the looking glass

Abstract

The challenge that PKU screening programs face is to be effective without sacrificing individual liberty. Most states have assumed that this is impossible, and have enacted mandatory PKU screening tests. It now appears that in fact voluntary screening for PKU can be effective. Accordingly, it seems appropriate to reexamine existing mandatory screening statutes to determine if we can replace government coercion with voluntary informed consent. Focus should be placed on the proper role of the government in screening, and on improving the consent process, and not on those few couples who withhold consent.

KIE: States with mandatory screening programs for phenylketonuria in newborns are urged to consider instituting voluntary programs based on a parental consent requirement. Citing the findings of a survey by Ruth Faden et al. to the effect that a voluntary screening program is operating effectively in Maryland, Annas contends that permitting parents to refuse screening would protect the values of beneficence and autonomy without subjecting infants to undue risk.