Surgically Shaping Children

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).

• List of ContributorsAcknowledgmentsIntroduction: Thinking About Surgically Changing ChildrenPart I: Personal Narratives About Appearance – Normalizing SurgeryChapter 1. Twisted Lies: My Journey in an Imperfect BodyChapter 2. Do I Make You Uncomfortable? Reflections on Using Surgery to Reduce the Distress of OthersChapter 3. My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening SurgeriesChapter 4. The Seduction of the Surgical FixPart II: Technology and the Pursuit of NormalityChapter 5. Concepts of Technology and Their Role in Moral ReflectionChapter 6. Emily's Scars: Surgical Shapings, Technoluxe, and BioethicsChapter 7. Thoughts on the Desire for NormalityPart III: The Surgical ContextChapter 8. To Cut or Not to Cut? A Surgeon's Perspective on Surgically Shaping ChildrenChapter 9. What's Special About the Surgical Context?Chapter 10. Are We Helping Children? Outcome Assessments in Craniofacial CarePart 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 ChildrenChapter 13. "In Their Best Interests": Parents' Experience of Atypical GenitaliaChapter 14. Toward Truly Informed Decisions About Appearance-Normalizing SurgeriesChapter 15. Appearance-Altering Surgery, Children's Sense of Self, and Parental LoveChapter 16. What to Expect when You Have the Child You Weren't ExpectingIndex

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 2006 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 2007 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 2007 An important book for the questions it puts forth. Medical Humanities Review 2005 A rich and fruitful diversity of perspectives, opinions, and styles. -- Henri Wijsbek Perspectives in Biology and Medicine 2008