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Testing Baby

Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking

Rachel Grob
Copyright Date: 2011
Published by: Rutgers University Press
Pages: 290
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  • Book Info
    Testing Baby
    Book 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 alsochangedby it in ways not yet recognized.

    Testing Babyis 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.

    eISBN: 978-0-8135-5202-6
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-xiv)
  4. Chapter 1 Saving Babies, Changing Lives
    (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 or understanding, the newborn’s blood is analyzed for molecular clues to her future. Many of these tests do what the highly regarded newborn-screening public health program was originally intended to do: provide information that, if acted on quickly, can be used to protect the infant’s health or even...

  5. Chapter 2 Diagnostic Odysseys, Old and New: How Newborn Screening Transforms Parents’ Encounters with Disease
    (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 that—as a number of parents put it—“our little world just crashed.” Worry about the future, questions about what the diagnosis means, and a sense that life is irretrievably altered—these experiences are a somber province shared by all parents receiving their child’s cystic fibrosis diagnosis.


  6. Chapter 3 Specters in the Room: Parenting in the Shadow of Cystic Fibrosis
    (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 marks the beginning of their careers as parents of children with a genetic disorder. Once on the postdiagnosis side of the divide, parents can never go back. Facing a present and a future shaped by the diagnosis, they have much to say about going...

  7. Chapter 4 Encounters with Expertise: Parents and Health Care Professionals
    (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 live with it, are not private family matters. Rather, they are heavily mediated by those who test the baby, give the news, impart instructions, provide education and treatment, answer questions, make referrals, see the baby in clinic, monitor compliance, and generally interpret the condition’s meaning. I have shown how the diagnostic...

  8. Chapter 5 A House on Fire: How Private Experiences Ignite Public Voices
    (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 about it are summarized as unambiguously enthusiastic. When questions about the impact of screening are raised at all, it is primarily academic clinicians, social scientists, and bioethicists who articulate them. But commentators, advocates, policymakers, and the media usually depict parents as having uniformly positive experiences with NBS, and negative ones in its absence. Parents are...

  9. Chapter 6 Brave New Worlds: Visible in a Single Drop of Blood?
    (pp. 207-234)

    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 notice.

    This book has focused on the NBS-related experiences of parents whose children were diagnosed at birth with a relatively rare genetic disorder, but all signs point to a future in which newborn screening programs touch the lives of many others as well. More and more parents will now be getting...

  10. Notes
    (pp. 235-246)
  11. References
    (pp. 247-262)
  12. Index
    (pp. 263-272)
  13. Back Matter
    (pp. 273-276)