Testing Baby
Testing Baby
The Transformation of Newborn Screening, Parenting, and Policymaking
Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent for compulsory screening to detect or rule out a large number of disorders. Newborn screening is expanding rapidly, fueled by the prospect of saving lives. Yet many lives are also changed by it in ways not yet recognized.
Testing Baby is the first book to draw on parents’ experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grob’s cautionary tale also explores the powerful ways that parents’ narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parents’ consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents’ interests are understood and solicited in policy debates.
Gripping, tragic, cogent, emotional, and haunting, reading through these narrative accounts and Grob's interpretation of them achieves the effect of great sociological monographs.
Newborn screening is a most interesting area that impacts each and every individual in countless ways. In this truly inspiring work, Grob has captured what others have not been able to write about the topic. Essential.
'Testing Baby does what sociology is meant to do—transform our understanding of everyday life, connect the personal to the structural, and challenge our thinking. A rare accomplishment'
Testing Baby is an excellent book for medical professionals—including physicians, social workers, and genetic researchers—as well as policymakers. A relevant and important contribution that sits at the interface of medical science, reproduction, and parenthood, Grob’s work will provoke further reflection regarding the future role of technology and genetic information for the human experience.
Grob provokes the reader to think deeply about a taken-for-granted aspect of the medicalization of reproduction in the United States.
Her accessible, Testing Baby,...may be the start of a differenc kind of policy conversation.
Rachel Grob's timely and insightful analysis explores how families actually experience newborn screening. It will be read with profit by anyone interested in issues raised by medical screening programs generally.
RACHEL GROB is Scholar in Residence and Director of National Initiatives at the Center for Patient Partnerships (University of Wisconsin-Madison) and Health Advocacy faculty member at Sarah Lawrence College. She is the co-editor of Patients as Policy Actors (Rutgers University Press).
Chapter 1. Saving Babies, Changing Lives
Chapter 2. Diagnostic Odysseys, Old and New: How Newbord Screening Transforms Parents' Encounters with Disease
Chapter 3. Specters in the Room: Parenting in the Shadow of Cystic Fibrosis
Chapter 4. Encounters with Expertise: Parents and Health Care Professionals
Chapter 5. A House on Fire: How Private Experiences Ignite Public Voices
Chapter 6. Brave New Worlds: Visible in a Single Drop of Blood?
Notes
References
Index
