Newborn screening

Parent refusal to have an infant screened

A parent may refuse screening for personal and/or religious beliefs. The majority agree to screening if properly counseled about the importance of early detection. Infants have been harmed as a result of the decision against screening as the "conditions were too rare", or "we don't want to poke the infant", or "the second test is not really necessary". In the event that parents are adamantly opposed to screening, it is the responsibility of the practitioner to fully inform them about the process and all screening conditions and to obtain a signed Newborn Screening Test Refusal (Informed Dissent) document. This document is placed in the infant's medical record with a copy given to the parents, and copies forwarded to the Nevada State Public Health Laboratory and the infant's primary care provider.

Infants who are never tested

While screening programs are now universal in the United States, it is estimated that approximately 1‐2 percent of births are not screened either because of parental refusal or practitioner oversight or omission. For every 1 percent of newborns not screened in the United States, approximately 45‐50 infants with serious health conditions will be missed each year.