Opinion: Newborn testing and sample retention is essential for children's health

Yahoo

20-02-2025

We wish to respond to the editorial by Brian Morris and Daryl James titled 'Newborn blood retention policy raises constitutional concerns in Utah.' We would like to congratulate the authors for bringing this important issue of newborn screening to everyone's attention. A discussion on the merits and concerns about the Utah program is timely since a bill has been recently introduced by Representative Pierucci that in summary mandates the following:
An informational form be provided to a newborn infant's parent or guardian at least 24 hours prior to administering newborn infant health testing
The caregiver can opt out of testing
The neonatal samples be destroyed within 90 days
Newborn screening is routinely provided to all newborns, and parents currently have the option to decline testing. This program has been successfully conducted by the Utah Department of Health and Human Services to enable the early identification of infants with certain genetic, metabolic, hearing and endocrine disorders.
Without early identification and prompt treatment, these disorders can result in devastating health consequences, including death. Many newborns born in Utah have been diagnosed and successfully treated. Additional efforts at parental information and education would be welcome and should be supported. However, we are concerned about any barriers and delays that would prevent timely diagnosis of newborns with life threatening diseases.
We have outstanding but very busy obstetricians in our state. Who would be tasked with discussing the rationale for the testing, obtaining and documenting parental approval or denial and coordinating these additional steps with subsequent neonatal testing?
Most importantly, we are concerned about the requirement that the sample be destroyed in 90 days. Residual bloodspots in states around the country have proven to be an extremely valuable resource for clinical care and research on the health and welfare of children.
In Utah, an excellent example is cytomegalovirus (CMV) testing for children. In 2013, former state Representative Ronda Rudd Menlove spearheaded legislation mandating early cytomegalovirus (CMV) testing for infants who failed their newborn hearing screen. CMV is a leading and often unrecognized cause of childhood hearing loss and an important cause of brain defects. Utah was the first state in the country to implement this statewide early CMV screening program. It has been extremely effective in diagnosing hundreds of children with this condition.
However, this approach will not identify all children with CMV. For the older child who presents with hearing loss or developmental delay, we have relied on the neonatal dried blood spot samples to diagnose these children. We have tested almost 100 children after obtaining parental consent. Over 20 children from Utah have been diagnosed by this approach. This diagnosis has led us to identify previously unidentified brain abnormalities associated with CMV infection. Some infants have been successfully treated with antiviral medication that has prevented further hearing loss. Knowing that CMV caused deafness and that there is a high risk for further hearing loss in the other ear has enabled us to obtain insurance approval for several CMV-infected children who needed cochlear implantation. In fact, we recently diagnosed a 7-year-old child with CMV using his neonatal sample.
We hope that Utah legislators will fully evaluate the implications of this legislation and pass a bill that will not harm the countless children born in this state.