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

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.