Governing population screening in an age of expansion: The case of newborn screening

Newborn bloodspot screening is one of the most enduring and successful population screening initiatives. Yet technological innovation to permit simultaneous measurement of multiple biomarkers – and potentially, entire genomes – has spurred expansion and debate. Through a cross-jurisdictional comparison, we describe the varied roles and reach of screening-related governance structures in the United States, the United Kingdom, New Zealand and Canada, and highlight the distinct values and resources brought to bear by the genetics, public health and maternal-child health communities in adjudicating the benefits and burdens of expanded newborn screening. We call for the expansion of formal governance structures that are balanced in resources and perspective and mandated to ensure that the organization and delivery of newborn screening achieves optimal quality.