Full Description
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.
Contents
Acknowledgments
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
