Policy shifts in newborn screening: Applying the Advocacy Coalition Framework

There has been a flurry of dialogue surrounding newborn screening (NBS) in the last decade. As our understanding of genetic disorders improves, new decisions about screening will be made. Almost every state has expanded its newborn screening program since 2000. Factors that influenced these decisions include: technological innovations that improve or create new testing procedures, scientific data on disorders that inform both screening methods and treatment options, and the development of advocacy coalitions. Because of the involvement of advocacy organizations, government, and academia in the NBS policy process, the Advocacy Coalition Framework (ACF) provides a useful framework in working through policy changes over time.

The purpose of this research was to conduct a scan of information through Lexis Nexis (Academic/Congressional) to determine the presence or absence of advocacy coalitions. This research provides insight into the NBS policy process and the role of advocacy over time. Two advocacy coalitions emerged: one in favor of fully expanding newborn screening in every state and another that believes states should proceed with caution and evaluate each individual disease prior to its inclusion in the NBS panel. Newborn screening is a classic example of a valence issue, in that the interested parties involved agree that there should be NBS, but do not agree to what extent services should expand and be funded with public resources. The two advocacy coalitions differ with regard to what the programs should entail, how they should be implemented, and who should be responsible for coordinating and funding their expansion.