Investigator Awards In Health Policy Research 53 Bay State Road
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Publications » Featured Books by Investigators:
Section Info
Investigator publications listed on this site relate to research funded through the Investigator Awards program. References are provided for books and selected journal articles written by the investigators. Abstracts are available for some featured publications.
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Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking
Grob, R.
Published: 2011
Rutgers University Press
»Show summary
Within 48 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 many things including 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.

Linked Investigator Award(s):
Rachel Grob, Ph.D., M.A.
Barbara Katz Rothman, Ph.D.
Heel Sticks and Amnios: Disjunctures and Discrepancies in Prenatal and Newborn Genetic Screening
Award Year: 2005

»Show Abstract
Genetics and genetic testing are often discussed as revolutionizing modern medicine, but so far this revolution has largely occurred in the world of medical care for pregnant women and newborns. Co-investigators Barbara Katz Rothman, Ph.D. and Rachel Grob, Ph.D. examine the expansion of genetic screening and testing for pregnant women and newborns, the differences between optional services and mandatory screening requirements, and the unintended consequences of screening and testing. Their project, Heel Sticks and Amnios: Disjunctures and Discrepancies in Prenatal and Newborn Genetic Screening, considers a number of controversial issues, including whether it's useful to screen for rare or untreatable conditions; the lack of informed consent, counseling and follow-up in newborn screening; effects of testing and screening on families; and the various forces that are shaping public policy in this area including the influence of emotional appeals from parents of affected children.
More Books by Author(s):
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Hoffman, B., Tomes, N., Schlesinger, M., Grob, R. editors, Patients as Policy Actors. New Brunswick: Rutgers University Press, 2011.