Evaluating the "Sensitivity and Specificity" of the Newborn Screening Debate: How Tradeoffs between Population and Individual Benefit are shaping the Conversation between Public Health and Genetic Advocates
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Newborn screening (NBS) is a national program that identifies and treats newborns with rare congenital conditions before the onset of symptoms, preventing premature death and serious disability in thousands of newborns each year in the U.S. Recent advances in analytic technology have exponentially expanded the scope and number of candidate disorders that could be screened for at birth, contributing to the currently recommended panel of 31 core conditions. Yet, the potential to expand the panel of NBS conditions continues to increase as we enter the genomic era. This had led to a debate over the criteria that should be used to evaluate a potential NBS test; at stake are the trade-offs for different stakeholders inherent in balancing competing values. In the debate, one side supports maintaining a limited panel using traditional public health criteria, while the other side challenges this rationale and instead supports expanded screening criteria. Therefore, the purpose of this analysis is to identify areas of agreement and disagreement between the two sides of the NBS criteria debate to elucidate the underlying issues and offer potential recommendations to enhance collaboration. To do this, I conducted a discourse analysis of 61 texts representing different perspectives in this debate to elucidate the underlying motives, values, and perspectives. I reviewed all of the texts using a set of structured questions to systematically identify the facts and moral arguments used to support different inclusion criteria. I specifically coded for phrases that implicitly or explicitly discussed the different types of benefits associated with NBS tests, the role of technology, and the distributions of social goods within NBS. I found that the two sides have more areas of agreement than disagreement, including a shared primary value of the life-saving and other health benefits of NBS, but that the underlying values, motives, and perspectives of each side of the debate was shaped by differing foci of attention that extended to formulate different senses of normative moral duty. For the public health side of the debate, duty extended to balance benefit and harms at the population level, contributing to emphasis on clinical utility to justify NBS, technology to be limited within the scope of traditional public health criteria, and social goods that are more broadly distributed to balance competing societal goals. Conversely, genetic advocates' duty extended to provide benefit and minimize harms for individuals. These values translated into support for a broader definition of benefit warranting NBS, a maximization of technology's potential, and increased social goods directed to NBS. Since we cannot expect or desire that either side will change their sense of moral obligation, practical steps forward must address other routes. For example, it may be acknowledged that value differences require "winners" and "losers" and that the most compelling argument will be chosen to lead policy decisions. Or, a consequentialist framework could be adopted, whereby mutually agreed upon outcomes would likely dictate characteristics of the criteria. Regardless, clarifying the issues on which each side of the debate agrees and disagrees is valuable in promoting mutual moral "recognition" of the others values and perspectives. Ultimately, public health and genetic advocates have more areas of agreement concerning NBS criteria, which reinforces the two stakeholders as partners in their shared mission to improve health.