Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #107298

Mary Ann Baily, PhD, The Hastings Center, 21 Malcolm Gordon Road, Garrison, NY 10524, 845-424-4040 Ext. 200, bailym@thehastingscenter.org

In 1994, state newborn screening test panels included between two and eight conditions; in 2005, the number ranges from three to over thirty. Historically, newborn screening focused on conditions for which early diagnosis prevented mental retardation or premature death; now, newborn screening programs include conditions for which the benefits of early diagnosis and treatment are equivocal or non-existent. These developments are occurring in a political context in which consumer advocates, health care professionals, and commercial laboratories and technology companies put strong pressure on lagging states to catch up with the leaders, and on leading states to add even more conditions. In this environment, policymakers find it difficult to fulfill their ethical obligation to weigh the evidence on the value of screening and act as stewards of community resources as they manage public screening programs. This presentation will discuss the underlying ethical framework for making newborn screening policy decisions, the role of evidence within it, and the type of evidence needed to justify adding a condition to a newborn screening panel. It will also consider the issue of fairness raised by variation in newborn screening panels across states and the ethical arguments for a uniform national panel. Finally, it will review recent newborn screening developments and assess what can be done to improve the quality of policy decisions and ensure that they are evidence-based.

Learning Objectives:

• Identify the ethical and policy issues raised by expanding newborn screening programs.
• Articulate the ethical arguments for evidence-based, cost-conscious newborn screening policy and practice.
• Use the arguments to analyze and evaluate recent developments in newborn screening policy at the state and federal levels.

Keywords: Neonatal Screening, Genetics

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.

Recorded presentation