Synopses & Reviews
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 parentsandrsquo; experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grobandrsquo;s cautionary tale also explores the powerful ways that parentsandrsquo; narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parentsandrsquo; 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 parentsandrsquo; interests are understood and solicited in policy debates.
Review
andquot;Rachel Grob's timely and insightful analysis explores how families actually experience newborn screening. It will be read with profit by anyone interested in issues raised by medical screening programs generally.andquot;
Review
"Grob provokes the reader to think deeply about a taken-for-granted aspect of the medicalization of reproduction in the United States." Diane B. Paul - The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurtur
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andquot;Testing Baby does what sociology is meant to doandmdash;transform our understanding of everyday life, connect the personal to the structural, and challenge our thinking.and#160; A rare accomplishmentandquot;
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andquot;Newborn screening is a most interesting area that impacts each and every individual in countless ways. In this truly inspiring work, Grob has captured what others have not been able to write about the topic. Essential.andquot;
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andquot;Gripping, tragic, cogent, emotional, and haunting, reading through these narrative accounts and Grob's interpretation of them achieves the effect of great sociological monographs.andquot;
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andquot;
Testing Baby is an excellent book for medical professionalsandmdash;including physicians, social workers, and genetic researchersandmdash;as well as policymakers. A relevant and important contribution that sits at the interface of medical science, reproduction, and parenthood, Grobandrsquo;s work will provoke further reflection regarding the future role of technology and genetic information for the human experience.andquot;
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This book is a must read for anyone with a stake in protecting and promoting our public's health.
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"This strong volume brings together contributors of different disciplinary and experiential backgrounds, broadening our understanding of how patient voices influence American health care policy."
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"
Patients as Policy Actors provides food for thought on the representation of patients’ voices in a variety of health care arenas. This edited anthology is both academic and intended to foster change. It evaluates patient effectiveness, from patients’ struggles to be heard to their successful mobilization of resources for shared interests."
Review
"Despite all of the recent study of patient activism, there has been little attempt to synthesize its achievements and limitations—making the scholarship as fragmented as the activism itself. Patients as Policy Actors fills this void. It should be required reading for anyone interested in how individual patients might mobilize together to help effect meaningful health care reform in the United States."
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"A valuable, timely book. It is a guide to developments in the field, critical with the new federal health care law soon to become fully operational. Highly recommended."
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"This is a fascinating book that greatly enhances our understanding of the complexities surrounding the place of the patient in modern health care."
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andquot;Grob provokes the reader to think deeply about a taken-for-granted aspect of the medicalization of reproduction in the United States.andquot;
Review
andquot;Her accessible,
Testing Baby,...may be the start of a differenc kind of policy conversation.andquot;
Synopsis
The role of public health services in America is generally considered to be the reduction of illness, suffering, and death. But what exactly does this mean in practice? At different points in history, professionals in the field have addressed housing reform, education about sex and illegal drugs, hospital and clinic care, gun violence, and even bioterrorism. But there is no agreement about how far public health efforts should go in attempting to modify behaviors seen as lifestyle choices, or whether the field's mandate extends to intervening in broader social and economic conditions.
The authors of the thirteen essays in this book attempt to understand what are, and what should be, the field's chief goals and activities. Drawing on examples that include September 11th, Hurricane Katrina, the anthrax scare, and more, contributors examine the historical evolution of the profession and show how public health is changing in the context of natural and human-made disasters and the politics that surround them.
Synopsis
Patients as Policy Actors offers groundbreaking accounts of one of the health field's most important developments of the last fifty years--the rise of more consciously patient-centered care and policymaking. The authors in this volume illustrate, from multiple disciplinary perspectives, the unexpected ways that patients can matter as both agents and objects of health care policy yet nonetheless too often remain silent, silenced, misrepresented, or ignored. The volume concludes with a unique epilogue outlining principles for more effectively integrating patient perspectives into a pluralistic conception of policy-making. With the recent enactment of the Patient Protection and Affordable Care Act, patients' and consumers' roles in American health care require more than ever the careful analysis and attention exemplified by this innovative volume.
About the Author
Beatrix Hoffman is an associate professor and chair of the department of history at Northern Illinois Unversity. She is author of
The Wages of Sickness: The Politics of Health Insurance in Progressive America.
Nancy Tomes is a professor in the history department at Stony Brook University.
She is the author of several books,among them, The Gospel of Germs: Men, Women, and the Microbe in American Life.
Rachel Grob is scholar in residence and director of national initiatives at the Center for Patient Partnerships, University of Wisconsin-Madison and healthy advocacy faculty member at Sarah Lawrence College. She is author of Testing Baby: The Transformation of New Born Screening, Parenting, and Policymaking (Rutgers Press, forthcoming).
Mark Schlesinger is a professor of health policy and a fellow of the Institution for Social and Policy Studies at Yale University and past editor of the Journal of Health Policy, Politics and Law.
Table of Contents
Introduction: Patients as Policy Actors, by Nancy Tomes and Beatrix Hoffman
Part I. Voices of the Silent
1. Solitary Advocates: The Severely Brain Injured and Their Surrogates, by Joseph J. Fins and Jennifer Hersh
2. Physician-Patient Communication in the Care of Vulnerable Populations: The Patient's Voice in Interpersonal Policy, by M. Robin DiMatteo, Kelly B. Haskard-Zolnierek, Summer L. Williams, and Desiree Despues
3. Is It Time to Push Yet? The Challenges to Advocacy in U.S. Childbirth, by Elizabeth Mitchell Armstrong and Eugene Declercq
4. A Pound of Flesh: Patient Legal Action for Human Research Protections in the Biotech Age, by Lori Andrews and Julie Burger Chronis
Part 2. From Individual to Collective
5. From Outsiders to Insiders: The Consumer-Survivor Movement and Its Impact on U.S. Mental Health Policy, by Nancy Tomes
6. "Don't Scream Alone": The Health Care Activism of Poor Americans in the 1970s, by Beatrix Hoffman
7. The Canary in the Gemeinschaft: Using the Public Voice of Patients to Enhance Health System Performance, by Mark Schlesinger
8. Patient Appeals as Policy Disputes: Individual and Collective Action in Managed Care, by Marc A. Rodwin
Part 3. How Patients Matter
9. The Power of Us: A New Approach to Advocacy for Rare Cancers, by Amy Dockser Marcus
10. Patients and the Rise of the Nurse-Practitioner Profession, by Julie Fairman
11. A House on Fire: Newborn Screening, Parents' Advocacy, and the Discourse of Urgency, by Rachel Grob
12. Measuring Success: Scientific, Institutional, and Cultural Effects on Patient Advocacy, by Steven Epstein
Epilogue: Principles for Engaging Patients in U.S. Health Care and Policy, by Rachel Grob and Mark Schlesinger
Notes on Contributors
Index