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

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


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About the Book

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

Table of Contents:
List of Contributors Acknowledgments Introduction: Thinking About Surgically Changing Children Part I: Personal Narratives About Appearance – Normalizing Surgery Chapter 1. Twisted Lies: My Journey in an Imperfect Body Chapter 2. Do I Make You Uncomfortable? Reflections on Using Surgery to Reduce the Distress of Others Chapter 3. My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries Chapter 4. The Seduction of the Surgical Fix Part II: Technology and the Pursuit of Normality Chapter 5. Concepts of Technology and Their Role in Moral Reflection Chapter 6. Emily's Scars: Surgical Shapings, Technoluxe, and Bioethics Chapter 7. Thoughts on the Desire for Normality Part III: The Surgical Context Chapter 8. To Cut or Not to Cut? A Surgeon's Perspective on Surgically Shaping Children Chapter 9. What's Special About the Surgical Context? Chapter 10. Are We Helping Children? Outcome Assessments in Craniofacial Care Part IV: Children and Parents Deciding About Appearance–Normalizing Surgery Chapter 11. Who Should Decide and How? Chapter 12. The Power of Parents and the Agency of Children Chapter 13. "In Their Best Interests": Parents' Experience of Atypical Genitalia Chapter 14. Toward Truly Informed Decisions About Appearance-Normalizing Surgeries Chapter 15. Appearance-Altering Surgery, Children's Sense of Self, and Parental Love Chapter 16. What to Expect when You Have the Child You Weren't Expecting Index

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).

Review :
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. New England Journal of Medicine 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. Medical Humanities Review A rich and fruitful diversity of perspectives, opinions, and styles. -- Henri Wijsbek Perspectives in Biology and Medicine


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Product Details
  • ISBN-13: 9780801890901
  • Publisher: Johns Hopkins University Press
  • Publisher Imprint: Johns Hopkins University Press
  • Height: 229 mm
  • No of Pages: 304
  • Spine Width: 16 mm
  • Weight: 408 gr
  • ISBN-10: 080189090X
  • Publisher Date: 10 Dec 2008
  • Binding: Paperback
  • Language: English
  • Returnable: 01
  • Sub Title: Technology, Ethics, and the Pursuit of Normality
  • Width: 152 mm


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