204026 Policy shifts in newborn screening: Applying the Advocacy Coalition Framework

Wednesday, November 11, 2009: 8:50 AM

Catharine Riley, MPH , University of Washington School of Public Health, Seattle, WA
Carolyn Watts, PhD , Department of Health Services, University of Washington, Seattle, WA
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.

Learning Objectives:
Describe the Advocacy Coalition Framework Identify the advocacy coalitions involved in newborn screening policy changes over time Discuss the role of advocacy in shaping newborn screening policy

Keywords: Genetics, Advocacy

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to give this presentation because I have been researching newborn screening for the past five years. I have two masters degrees in public health, one with an emphasis on health administration and policy and one with an emphasis on public health genetics. I am currently working on my PhD in public health genetics and will be presenting findings from my dissertation research. I have two years of local/state public health practice experience, working as the Director of the Arizona State Turning Point Project, and two years of experience as the Continuing Education Coordinator for the Mel and Enid Zuckerman Arizona College of Public Health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.