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

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

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).