A survey to evaluate parental consent as public policy for neonatal screening

Abstract

Most states currently have laws which result in compulsory neonatal screening practices, despite a widespread consensus that participation in genetic services and programs should be voluntary. In 1976, Maryland adopted a regulation designed to respect parents' rights to refuse neonatal screening by imposing a parental consent requirement. The results of a study designed to evaluate the effects of this regulation are reviewed here. Many health care providers were unaware of the parental consent regulation. However, hospitals were generally in compliance with the technical stipulations of the regulations. There was little evidence that the regulation resulted in additional costs to the health care system, either in terms of hospital staff time or in terms of loss of efficiency in the number of infants screened. Mothers affected by the regulation were largely in favor of being informed about neonatal screening and learned a significant amount of new information from the disclosure process. They were almost evenly divided on whether they favored parental consent.

KIE: A study is reported that assessed the reactions of health care providers and mothers to a Maryland regulation requiring parental consent prior to PKU screening of newborns. The findings indicated that a parental consent requirement is a feasible public health policy. Although most providers disliked the requirement, they complied with it at negligible cost and without loss of efficiency in screening. Mothers gained information from the consent forms, and most wanted to be informed beforehand if their babies were to be screened; they were almost evenly divided on whether parental consent should be a requirement for screening.