Testing Baby

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).

"Gripping, tragic, cogent, emotional, and haunting, reading through these narrative accounts and Grob's interpretation of them achieves the effect of great sociological monographs."(Contemporary Sociology) "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."(Choice) "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"- Barbara Katz Rothman (City University of New York) "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."(World Medical and Health Policy) "Grob provokes the reader to think deeply about a taken-for-granted aspect of the medicalization of reproduction in the United States." - Rayna Rapp, PhD. (Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America) "Her accessible, Testing Baby,...may be the start of a differenc kind of policy conversation."(Health Affairs) "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." - Diane B. Paul (The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurtur)

• AcknowledgmentsChapter 1. Saving Babies, Changing LivesChapter 2. Diagnostic Odysseys, Old and New: How Newbord Screening Transforms Parents' Encounters with DiseaseChapter 3. Specters in the Room: Parenting in the Shadow of Cystic FibrosisChapter 4. Encounters with Expertise: Parents and Health Care Professionals Chapter 5. A House on Fire: How Private Experiences Ignite Public VoicesChapter 6. Brave New Worlds: Visible in a Single Drop of Blood?Notes ReferencesIndex