Photo by FatCamera, courtesy iStockphoto
From their first breath of air to first taste of breastmilk, babies born across the U.S. experience many important milestones in their initial days of life. For nearly all of them, that includes their first blood screening for diseases that could threaten their health.
Each year, more than 98% of the 3.6 million infants born in the U.S. are tested for over 60 conditions — including congenital hypothyroidism, cystic fibrosis and sickle cell disease — through newborn screening programs. Before they even leave the hospital, a few drops of blood are usually collected, tested and analyzed, allowing health care teams to begin interventions for at-risk babies.
Newborn screening programs are lauded as a public health success, but could benefit from more leadership and coordination at the national level, a May report from the National Academies of Sciences, Engineering and Medicine finds. While federal officials recommend which conditions should be included in standard newborn blood screening panels, each state screening program operates differently. That means some screening programs are stronger than others.
The report recommends that the U.S. Department of Health and Human Services creates a 10-year strategic plan of newborn screening priorities with the help of advocates, scientists and government leaders. Those priorities include creating a committee to review new conditions and determine if more research is needed before they are considered for additional to screenings.
“We need coordination at the national level that can help unlock expertise and resources to benefit every baby born in the U.S. and keep pace with the incredible innovation happening in U.S. biomedical sciences,” Jewel Mullen, MD, MPH, chair of the committee that wrote the report, said in a news release.
The report also recommends states and territories share resources with each other. Partnerships with academic research centers could also help establish newborn screening research networks and increase access to new screening technology.
“Every state and territorial lab doesn’t have to be able to do everything if they’re well coordinated,” Mullen told The Nation’s Health. “Our committee acknowledged through our meetings, through the presentations, that not only is there great capacity across states, there’s also good cooperation and collaboration. The Association of Public Health Laboratories is a leader and convener for states in that way.”
To help address concerns about privacy, new standards for retention, sharing and use of blood samples should be set by state legislatures, the report said. Those standards should be transparent, and parents and children should be able to request destruction of samples.
Some parents have concerns about how blood spots are used after testing, said Mullen, who is associate dean for health equity and associate professor of population health and internal medicine at the University of Texas at Austin Dell Medical School. Those concerns could cause them to reject screenings.
“We’re very explicit (in the report) about how dried blood spots and this information should never be used, for example, for law enforcement, for civil or criminal proceedings,” Mullen said. “Alongside that trust, we have to make sure that people have the information that they need.”
In April, the Trump administration dissolved the federal Advisory Committee on Heritable Disorders in Newborns and Children, which advised the HHS secretary on conditions to be added to the Recommended Uniform Screening Panel.
The loss of the committee is a loss for health equity, Felesia Bowen, PhD, DNP, president-elect of the National Association of Pediatric Nurse Practitioners, told The Nation’s Health. Because states and territories rely on the panel for their screenings, Bowen fears there will be an even greater disparity between programs with more funding and expertise and those with fewer resources.
For more information on the NASEM report, “Newborn Screening in the United States: A Vision for Sustaining and Advancing Excellence,” visit www.nationalacademies.org.
- Copyright The Nation’s Health, American Public Health Association
