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Testing Baby

The Transformation of Newborn Screening, Parenting, and Policymaking

Rachel N. Grob

Publication Year: 2011

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.

Published by: Rutgers University Press

Title Page, Copyright Page

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Contents

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pp. vii-

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Acknowledgments

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pp. ix-xi

What draws me most compellingly to the discipline of sociology is its fundamental claim that context matters. This seems such a self-evident observation, yet I continue to marvel at how profound an insight it really is. And never has the structural power of my own life context been demonstrated to me more...

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Chapter 1. Saving Babies, Changing Lives

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pp. 1-37

Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent to a laboratory. There it will be tested for the many disorders the baby’s birth state has mandated for universal screening. Almost always without parental consent, and often without parental knowledge...

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Chapter 2. Diagnostic Odysseys, Old and New: How Newborn Screening Transforms Parents’ Encounters with Disease

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pp. 38-79

No research is needed to demonstrate that for parents, news that their child has been diagnosed with a serious genetic disease is devastating to receive. Regardless of how and when the diagnosis comes, it brings with it a range of painful responses: shock, grief, anger, numbness, fear, and very often the feeling...

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Chapter 3. Specters in the Room: Parenting in the Shadow of Cystic Fibrosis

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pp. 80-119

A diagnosis of CF is unquestionably a shock and a sorrow, a critical moment in the lives of parents. They remember it vividly even many years afterward. They relive it often, recalling every detail of who was kind and what was hurtful as it unfolded. It is the moment that ends the parents’ pre-diagnosis existence and...

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Chapter 4. Encounters with Expertise: Parents and Health Care Professionals

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pp. 120-159

For parents, a major feature of newborn-screening diagnosis is the immediate and pervasive contact it brings with health care providers—first with those who are involved with screening and testing, then with the “army” of professionals who make up the treatment team. Getting the diagnosis, and then learning to...

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Chapter 5. A House on Fire: How Private Experiences Ignite Public Voices

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pp. 160-206

Newborn screening is clearly changing the lives of parents and children in significant, complex ways. In the public domain, however, these complicated aspects of NBS are rarely discussed or considered. Instead, the relationships parents have with NBS are represented as exquisitely simple, and their attitudes...

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Brave New Worlds: Visible in a Single Drop of Blood?

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pp. 207-233

The world around us is changing very quickly. While we’re not looking, while we’re working at our jobs or washing the dishes, the context in which we live is continuously transformed. The new NBS is part of that rapid transformation, and its impact on infancy and early parenting deserves...

Notes

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pp. 235-245

References

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pp. 247-262

Index

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pp. 263-272


E-ISBN-13: 9780813552026
E-ISBN-10: 0813552028
Print-ISBN-13: 9780813551357

Page Count: 290
Publication Year: 2011