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Abstract: Most states currently have Jaws which result in compulsory neonatal screening practices. despite a widespread consensus that participation in genetic services and programs should he 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 regulation. There was lithe 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. (Am J Public Health 1982: 72:1347-1352.) [ABSTRACT FROM AUTHOR]

Abstract. To determine whether knowledge was improved as a result of obtaining informed consent from parents for newborn screening of their infants for phenylketonuria (PKU) and other hereditary metabolic disorders, new mothers in seven Maryland hospitals were interviewed either before receiving a standard disclosure (n = 210) or after giving consent (n = 418). The mean knowledge score of the women interviewed after giving consent was significantly higher (P < .001). Receiving the disclosure was a more powerful predictor of knowledge score, accounting for 40% of the variance, than demographic factors, which accounted for 9%. Women whose consent was obtained just prior to discharge tended to have lower knowledge scores than women whose consent was obtained earlier (P = .03). Women with higher knowledge scores were somewhat less likely to favor consent than women with lower scores. Although consent may not be appropriate for some low-risk procedures, informing parents can be easily and inexpensively accomplished. [ABSTRACT FROM AUTHOR]