Expanding Newborn Screening: Strategies to Limit the Use of Political Action Over Evidence-Based Decision Making to Add Disorders

Newborn screening is a successful public health program that tests babies for rare but serious disorders before symptoms appear. Early detection and intervention prevent disability, cognitive impairment, or death for thousands of U.S. infants every year. Each state determines disorders for which it will screen, and may be guided by the national Recommended Universal Screening Panel. The development of new screening technology has made it possible to expand the panel of disorders. Most states provide an evidence-based deliberative process before adding disorders for mandatory population-wide screening. However, increasingly, legislators in several states have bypassed this process to directly add disorders for testing. While well intended, legislators may re-direct resources toward disorders without a thorough review of the scientific and public health basis for testing and treatment.

This session will cover the experience of states where the legislative process was used to propose or add disorders for testing that lacked sufficient basis, and challenges faced by newborn screening programs in implementing these laws. This session will draw on the work of the Association of Public Health Laboratories Legal and Legislative Policies in Newborn Screening Workgroup (LLINBS), to create strategies and tools to explain and promote an evidence-based process for expanding screening panels. APHL launched the LLINBS Workgroup in 2013, to provide recommendations on law and policy and create practical tools to support newborn screening’s mission. The workgroup includes newborn screening programs and their attorneys, as well as stakeholders from academia and health care, working in collaboration with other newborn screening organizations.