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Informationen zum Autor 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). Klappentext Testing Baby is the first book to draw on parents' experiences with newborn screening in order to examine its far-reaching sociological consequences. 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. Rachel Grob's cautionary tale explores the powerful ways that parents' narratives have shaped this emotionally charged policy arena. Inhaltsverzeichnis 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
