232514 Opting-Out is Hard to Do: Challenges to Mandatory Newborn Screening Programs

Monday, November 8, 2010 : 11:00 AM - 11:15 AM

Aaron J. Goldenberg, PhD, MPH , Department of Bioethics, Case Western Reserve University, Cleveland, OH
Beth Tarini, MD, MS , Department of Pediatrics and Communicable Diseases, University of Michigan Health System, Ann Arbor, MI
Newborn screening programs have been almost exclusively framed within the context of child welfare with the mission of identifying children with inherited life threatening or developmentally devastating medical conditions. The potential life saving information provided by these programs has been used to ethically justify mandatory screening. Nevertheless, even within these mandatory programs most states do have policies and procedures to allow parents to opt out of screening under certain conditions. For example, most states allow parents to opt-out of screening for religious reasons; while some allow opting out for any reason given that they are informed about the potential dangers of doing so. However, it has been argued that recent changes to programs including the rapid expansion of screening panels and the potential use of residual samples for research represents a shift in the focus of newborn screening to include goals that challenge its traditional purposes. This presentation will discuss how these changes in newborn screening may raise a number of social concerns that involve public trust, privacy and consent and challenge our current approaches to opting out in newborn screening programs. In addition this presentation will report findings from a recent study of parental opting out options across states as well as what types of information parents are given regarding those policies/ procedures. Lastly, we will discuss how examining both current practices and the potential challenges of evolving programs to these approaches will be vital in promoting parental choice about screening while preserving its clinical and public health benefits.

Learning Areas:
Ethics, professional and legal requirements
Public health or related public policy

Learning Objectives:
Discuss how recent changes to newborn screening programs in the United States may challenge the moral justification for current opting out options for parents. Explore how current opting out options differ among newborn screening programs across the United States Describe how parents are informed about those options through newborn screening educational materials.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified because I have degrees in both public health and bioethics. My research over the last 5 years has focused on the ethical implications of changes in newborn screening and other mandatory public health interventions. My dissertation focused on the implications of informed consent for use of newborn screening dried bloodspots for research.
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.