Newborn screening is a program in the US that tests newborn babies for various conditions that could affect their long-term health or survival. This testing has been lifesaving for many babies and families. However, there are concerns that states may keep the newborn blood samples for years and use them for purposes that parents and children did not consent to. A recent lawsuit in New Jersey shows that newborn screening samples have been used for law enforcement purposes, raising questions about the retention and use of these samples. Currently, there are no federal laws on the limits of newborn screening samples, and state laws are inconsistent. To protect newborn screening programs and the families involved, uniform state laws or a federal statute outlining the retention and use of these samples must be adopted. Without such protections, families may opt out of newborn screening, which would be a devastating setback for newborn babies and their families, the healthcare system, and pediatric medicine.
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