Bill > SSB3122

This Study Bill establishes a "Congenital and Inherited Disorders Advisory Committee" to advise the state's center for congenital and inherited disorders and the department on newborn screening programs, ensuring access to genetic and genomic healthcare services. This committee, composed of individuals with relevant expertise and parent representatives, will help decide which conditions are included in newborn screenings and regularly assess their effectiveness. Importantly, the bill mandates that within twelve months of a new condition being added to a federal recommended screening panel, the advisory committee must consider and recommend its inclusion in Iowa's newborn screening, detailing the necessary capacity and resources. The department then has eighteen months to implement the screening for the new condition, provided the capacity and resources are available. The bill also requires the department to provide an annual status report to the general assembly detailing current and considered screening conditions, reasons for recommendations or non-recommendations, and any delays in the process. Finally, the bill updates existing law to broaden the scope of newborn screening from just "metabolic" disorders to all "congenital and inherited disorders" and clarifies that critical congenital heart disease screenings should be conducted in conjunction with these broader newborn screenings.