Today, nearly every US baby is screened for more than fifty rare genetic disorders, regardless of insurance status or ability to pay. This article explores the dramatic expansion of state-mandated newborn screening by analyzing affective enactments within public discourses of newborn screening advocacy. Drawing on public records from newborn screening policy hearings and secondarily on our own ethnographic data, we examine how parent advocacy narratives were carefully crafted in an attempt to produce an emotional response in policy makers. We argue that lifesaving interventions gather momentum within affective economies that cater to naturalized orientations to children such as sympathy and compassion while obscuring the fiscal and opportunity costs of public health programs. By describing how emotionally invested parent advocates have marshaled affect within newborn screening policy arenas, we illustrate affective economies as a powerful catalyst for forms of political action that may inadvertently sustain public health inequities even as they seek to redress them.
Affective Economies and the Politics of Saving Babies’ Lives
Mara Buchbinder is an assistant professor of social medicine and adjunct assistant professor of anthropology at the University of North Carolina at Chapel Hill. She is coauthor, with Stefan Timmermans, of Saving Babies? The Consequences of Newborn Genetic Screening (2013). Her research interests focus on the anthropology of biomedicine.
Stefan Timmermans is a professor and the chair of sociology at the University of California, Los Angeles. He is the author of Sudden Death and the Myth of CPR (1999), The Gold Standard: The Challenge of Evidence-Based Medicine and Standardization in Health Care (with Marc Berg; 2003), and Postmortem: How Medical Examiners Explain Suspicious Deaths (2006). His current research interests include qualitative data analysis and health care technologies.