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Surgically Shaping Children: Technology, Ethics and the Pursuit of Normality

Surgically Shaping Children: Technology, Ethics and the Pursuit of NormalityEdited by Erik Parens
Johns Hopkins University Press, April 2006
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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 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

Reviews

“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

“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

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