Stefan Timmermans and Mara Buchbinder
The Consequences of Newborn Genetic Screening
University of Chicago Press 2015
New Books Network September 30, 2015 Mikey McGovern
In their book, Saving Babies? The Consequences of Newborn Genetic Screening (University of Chicago Press, 2015) UCLA sociologist and current department chair Stefan Timmermans and Mara Buchbinder, assistant professor of social medicine and anthropology at the University of North Carolina address tough questions about the efficacy of genetic testing through a longitudinal study of a genetics clinic.
Screening for common genetic disorders is a high opportunity area for the application of biomedical knowledge to the clinic. However, this population health measure can quickly precipitate personal crises and emotional upheaval in the process of confirming results that often turn out to be false positives. For many families, this taxing diagnostic ordeal profoundly shapes the experience of starting or growing their family, and for some it is only the beginning of a greater therapeutic odyssey. Newborn genetic screening undoubtedly saves lives, but its social repercussions require greater scrutiny.
This is precisely the task to which Saving Babies? sets itself: an ethnographically-informed assessment of the intended and unintended consequences of genetic screening as they impact families in the clinic and beyond. While newborn screening is meant to provide actionable certainty, its reality is far less clear-cut. Uncertainty is not simply lack of knowledge that the application of technology can eradicate, but rather an intrinsic characteristic of the clinical situation that more information, even more precise information, can often exacerbate. Moreover, longstanding inequalities in the U.S. healthcare system often prevent conditions that can be easily diagnosed from being treated.
Saving Babies? is a serious exercise in the sociology of knowledge driven by engaging personal narratives that get at the urgency of newborn screening as a felt phenomenon, as much as an important public health program. As such, it is great reading for sociologists, anthropologists, and clinicians interested in the broader social dimensions of medical practice.