Testing Baby: The Transformation of Newborn Screening, Parenting, and Policy Making

Testing Baby: The Transformation of Newborn Screening, Parenting, and Policy Making

Testing Baby: The Transformation of Newborn Screening, Parenting, and Policy Making

Testing Baby: The Transformation of Newborn Screening, Parenting, and Policy Making

Synopsis

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.

Excerpt

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 to save her life. Others have much more complex or indeterminate consequences. Some identify variants that may in fact never cause manifest signs or symptoms. Others find mutations that will result in serious or fatal disease for which there is as yet no cure. And in almost all cases, these tests provide information about what at the time of screening are abstractions: genetic traits that have not yet been expressed and will not result in recognizable effects for weeks, months, years, or—for those who are most fortunate—ever.

Mandatory, population-wide screening for noninfectious disease is unprecedented in U.S. public health. Until the mid 1960s, it did not exist. Yet by a decade later, every state had begun newborn screening. Why? Largely because advocates compellingly argued that immediate identification of phenylketonuria (PKU)—a serious, early-onset, treatable genetic condition—was the only way to prevent death or permanent disability for affected babies. Newborn screening (NBS) programs continue today, and they do indeed save lives. But they have expanded to cover not just one but up to eighty-plus genetic disorders, many of which are neither classifiable nor treatable in straightforward ways, and with . . .

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