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Surgically Shaping Children

Technology, Ethics, and the Pursuit of Normality

Edited by Erik Parens

Winner of an Honorable Mention in the Clinical Medicine category of the Professional and Scholarly Publishing Awards given by the Association of American Publishers

At a time when medical technologies make it ever easier to enhance our minds and bodies, a debate has arisen about whether such efforts promote a process of "normalization," which makes it ever harder to tolerate the natural anatomical differences among us. The debate becomes especially complicated when it addresses the surgical alteration, or "shaping," of children. This volume explores the ethical and social issues raised by the recent proliferation of surgeries designed to make children born with physical differences look more normal.

Using three cases—surgeries to eliminate craniofacial abnormalities such as cleft lip and palate, surgeries to correct ambiguous genitalia, and surgeries to lengthen the limbs of children born with dwarfism—the contributors consider the tensions parents experience when making such life-altering decisions on behalf of or with their children.

The essays in this volume offer in-depth examinations of the significance and limits of surgical alteration through personal narratives, theoretical reflections, and concrete suggestions about how to improve the decision-making process. Written from the perspectives of affected children and their parents, health care providers, and leading scholars in philosophy, sociology, history, law, and medicine, this collection provides an integrated and comprehensive foundation from which to consider a complex and controversial issue. It takes the reader on a journey from reflections on the particulars of current medical practices to reflections on one of the deepest and most complex of human desires: the desire for normality.

Contributors

Priscilla Alderson, Adrienne Asch, Cassandra Aspinall, Alice Domurat Dreger, James C. Edwards, Todd C. Edwards, Ellen K. Feder, Arthur W. Frank, Lisa Abelow Hedley, Eva Fedder Kittay, Hilde Lindemann, Jeffery L. Marsh, Paul Steven Miller, Sherri G. Morris, Wendy E. Mouradian, Donald L. Patrick, Nichola Rumsey, Emily Sullivan Sanford, Tari D. Topolski

About the Author

Erik Parens is a senior research scholar at The Hastings Center, a visiting professor in the Science, Technology, and Society Program at Sarah Lawrence College, and the coeditor of Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation (Johns Hopkins Univ. Press, 2005). He is also editor of Enhancing Human Traits: Ethical and Social Implications (Georgetown Univ. Press, 1998) and Prenatal Testing and Disability Rights (Georgetown Univ.Press, 2000).

Reviews

"Notably, the contributors are parents, adults born with these conditions, clinicians, and ethicists. As such, Surgically Shaping Children provides a unique multidisciplinary examination of the issues raised."

- Alexander A. Kon, MD - JAMA

"This compilation of essays edited by Erik Parens is vitally important... Provides an amazing wealth of practical advice... All the chapters are well written and engaging... Parents facing grueling decisions about surgical interventions for their children will find great solace in this book."

"What I most liked about Surgically Shaping Children was the way it drew me into an ongoing conversation that exposed, interrogated, and rearticulated my common sense views on normality and the role of medicine in normalizing the differently embodied."

- Kathy Davis - Hastings Center Report

"An important book for the questions it puts forth."

"A rich and fruitful diversity of perspectives, opinions, and styles."

- Henri Wijsbek - Perspectives in Biology and Medicine

Endorsements

"A truly striking collection of voices that are largely absent from ordinary bioethics texts, and one of the finest anthologies I have read in years."

- Carl Elliott, University of Minnesota Center for Bioethics, author of Better than Well: American Medicine Meets the American Dream

"Surgically Shaping Children is a must-read for anyone concerned about the cultural denial of differences in human embodiment and the desire for the 'surgical fix.' In a style that is the trademark of any conversation initiated by the Hastings Center, the contributors—philosophers, physicians, patients, and parents—tackle all the difficult questions without opting for easy answers. This is a book that will make you think."

- Kathy Davis, Institute for History and Culture, University of Utrecht, The Netherlands, and author of Reshaping the Female Body

"In this thoughtful book, patients, parents, doctors, and distinguished philosophers speak to difficult questions of disability, technology, identity, and values."

- Peter D. Kramer, Brown University, author of Against Depression and Listening to Prozac

"As medicine gains ever greater skill at 'correcting' the physical deficiencies of children, we are also acquiring the power to alter personal identity and change the meaning of normality. In Surgically Shaping Children, Erik Parens has collected a wonderful range of provocative and thoughtful essays that, while providing no easy answers, raise crucially important questions about when, why, and how we should 'fix' the appearance of our children. Doctors, patients, ethicists, and parents will all be enriched by its wisdom and empowered by its intelligent consideration of these thorny issues."

- Stephen S. Hall, author of Merchants of Immortality

"It is extraordinary when a book manages to be both informative and critical. Surgically Shaping Children is an important book for parents who confront the reality of their children's appearing different from what they and society imagined. It is also a book for all readers interested in how norms of appearance affect the way we imagine ourselves and others and, equally important, how we employ medicine to rectify such differences."

- Sander L. Gilman, Emory University

"This fascinating and disturbing collection explores the difficult question of when and how surgery might be used for children born with disabilities and other anomalies. It speaks not just to every parent's desire to help his or her child, but also to concerns about the contested borders of health, normality, and difference, in an age when our biomedical powers may sometimes exceed our wisdom. "

- Tom Shakespeare, University of Newcastle, UK

"It was a joy reading this brilliant collection of essays. This carefully conceived and well-written book will be welcomed by health care professionals and medical ethicists, but they are by no means its only potential audience. The challenging issues it raises would make it an excellent text for seminar courses on ethics and philosophy. But in my opinion its greatest and most lasting value will be as a resource for parents and other family members of affected patients."

- Bruce J. Beckwith, Loma Linda University
Johns Hopkins University Press
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Electronic book text
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Other Titles by Erik Parens

Prenatal Testing and Disability Rights

edited by Erik Parens, Adrienne Asch
Sep 2000 - Georgetown University Press
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Enhancing Human Traits

edited by Erik Parens
Jan 2000 - Georgetown University Press
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Other Titles in Medical ethics & professional conduct

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Aug 2024 - Indiana University Press
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$30.00 USD - Paperback / softback

A Catechism for Health Care

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$24.95 USD - Paperback / softback

Doing Dignity

Christa Teston
Jun 2024 - Johns Hopkins University Press
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