A lab technician reviewed results of a newborn screen, identifying an abnormal result, as she processed screens last fall at the Wisconsin State Lab of Hygiene at the University of Wisconsin-Madison campus.
Kristyna Wentz-Graff • Milwaukee Journal Sentinel/MCT file,
Restore long-term storage of newborn screening data
- Article by: Joseph P. Neglia, Phillip Kibort, Julia Joseph-Di Caprio, Steven Koop and Ann M. Reed
- February 28, 2014 - 5:45 PM
As leaders of five major pediatric hospitals in Minnesota, we are committed to doing everything in our power to protect the health of infants and children. Through legislation being proposed this year, our lawmakers have an opportunity to join us in this commitment.
We are deeply concerned about the future of newborn screening in Minnesota — an issue that impacts nearly every baby born in the state. The Minnesota Department of Health, which oversees the program, is currently mandated to destroy the data from these screenings soon after birth. This requirement can and should be changed through the legislation recently introduced. There should not be an expiration date on vital health information.
Minnesota’s newborn screening program has saved more than 5,000 babies from the devastating effects of more than 50 serious disorders since 1965. Unfortunately, judicial decisions and legislative changes have ushered in devastating changes that undermine the quality of this lifesaving program.
Newborn screening involves simple tests before babies leave the hospital to determine whether they are at risk for a variety of disorders that can lead to illness, disability, mental retardation or death. It is an essential component of pediatric care that prevents many children from arriving in the emergency room.
In most states, newborn screening test results are saved for an extended period to assure proper diagnosis, timely follow-up and re-analysis, if necessary. Access to newborn screening data can be critical in emergency situations and helpful in cases of unexplained death. Unfortunately, Minnesota is one of only a few states that destroys newborn screening data weeks after birth. The law requires most blood spots to be destroyed before a child is 71 days old, though it can take up to six months to confirm a diagnosis in some cases. Additionally, the blood spots of babies who test positive for a disorder are destroyed by their second birthday along with all test results and values.
Minnesota’s once nation-leading newborn screening program was changed in response to privacy concerns. But the change represents a defeat for children and families. Just ask Stacy Nugent, whose daughter died suddenly and inexplicably at 2 years and 1 month of age — shortly after her blood spot was destroyed and became unavailable for re-analysis. Or Lindsay Hill, who wanted her son’s blood spot reanalyzed to determine whether there was an infection present at birth that may have contributed to his hearing loss. But it was too late.
A newborn’s blood spot provides a unique overview of his or her health at birth. It contains a variety of biological markers that can be helpful in identifying and treating certain diseases that may or may not be apparent right away. Once a newborn blood spot is destroyed, it can never be replaced.
In addition to benefiting individual families, long-term storage of newborn screening data provides for quality control and new test development. Stored blood spots and test results are needed to develop new tests that can help even more babies. This becomes a challenge when data are destroyed in a matter of weeks.
We cannot afford to simply throw away newborn screening data. In a recent report to the Legislature, the Minnesota Department of Health concurred, stating that “maintaining the current law will be detrimental to the program and will result in harm to Minnesota children and their families.”
Fortunately, legislation has been introduced to restore Minnesota’s newborn screening program by removing these arbitrary and risky timelines. Doing so will expand the window of opportunity for health-related testing, new test development and the research necessary to save children’s lives.
We stand beside the Minnesota Chapter of the American Academy of Pediatrics and other organizations urging legislators to pass this newborn-screening bill. We cannot allow one more child to suffer or die due to a condition that could have been prevented.
Joseph P. Neglia is chair, Department of Pediatrics, University of Minnesota Medical School; Phillip Kibort is vice president of medical affairs and chief medical officer at Children’s Hospitals and Clinics of Minnesota; Julia Joseph-Di Caprio is chief of pediatrics, Hennepin County Medical Center; Steven Koop is medical director, Gillette Children’s Specialty Healthcare; Ann M. Reed is physician in chief of the Mayo Clinic Children’s Center.
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