New Jersey would require more reviews of newborn screening options

The committee would review disorders and recommend which to add to newborn screening. The deadlines cover additions to the federal newborn screening list, listed disorders New Jersey does not screen for, and disorders outside that list. A screening test must be available, and the U.S. Food and Drug Administration (FDA) must have approved a treatment. Starting January 1, 2027, new federal additions would need review within one year. Reviews of already-listed disorders not screened in New Jersey must begin within one year of enactment; reviews of disorders outside the list must begin within two years.

The committee would review eight named disorders. Approved recommendations would lead the health department to prepare screening policies; rejected recommendations would require public explanations. The eight inherited disorders include Fabry disease, Gaucher disease, and Batten disease type 2. Adding screening would require an available test, an FDA-approved treatment, a committee recommendation, and the health commissioner’s approval. The review would begin October 1, 2027, and finish by October 1, 2028. Screening policies and procedures must be in place at least 60 days before screening is required.

The committee would give the health commissioner broader yearly advice and report to the governor and Legislature. The added advice would cover new developments in newborn screening, genetics, and early detection of inherited disorders. The report would cover reviews, approved and rejected recommendations, reasons for rejection, and progress toward putting screening changes in place. The added advice duty would start when the bill becomes law. The report would be due January 1, 2028.