Surgically Shaping Children

This volume explores the ethical and social issues raised by the recent proliferation of surgical techniques aimed at making children appear more normal. Using three cases -- involving surgeries to correct ambiguous genitalia of children who are intersexed, surgeries to lengthen the limbs of children who are dwarfs, and surgeries to eliminate craniofacial abnormalities such as cleft lip and palate -- Eric Parens deepens our understanding of the debate surrounding surgical interventions in children.

When bioethicists debate the use of technologies like surgery and pharmacology to shape our selves, they are, ultimately, debating what it means for human beings to flourish. They are debating what makes animals like us truly happy, and whether the technologies at issue will bring us closer to or farther from such happiness. The positions that participants adopt in debates regarding such ancient and fundamental questions are often polarized, and cannot help but be deeply personal. It is no wonder that the debates are sometimes acrimonious. How, then, should critics of and enthusiasts about technological self-transformation move forward? Based on his experience at the oldest free-standing bioethics research institute in the world, Erik Parens proposes a habit of thinking, which he calls "binocular." As our brains integrate slightly different information from our two eyes to achieve depth of visual perception, we need to try to integrate greatly different insights on the two sides of the debates about technologically shaping our selves-if depth of intellectual understanding is what we are after. Binocular thinking lets us benefit from the insights that are visible from the stance of the enthusiast, who emphasizes that using technology to creatively transform our selves will make us happier, and to benefit from the insights that are visible from the stance of the critic, who emphasizes that learning to let our selves be will make us happier. Parens observes that in debates as personal as these, we all-critics and enthusiasts alike-give reasons that we are partial to. In the throes of our passion to make our case, we exaggerate our insights and all-too-often fall into the conceptual traps that language sets for us. Foolishly, we make conceptual choices that no one who truly wanted understanding would accept: Are technologies value-free or value-laden? Are human beings by nature creators or creatures? Is disability a medical or a social phenomenon? Indeed, are we free or determined? Parens explains how participating in these debates for two decades helped him articulate the binocular habit of thinking that is better at benefiting from the insights in both poles of those binaries than was the habit of thinking he originally brought to the debates. Finally, Parens celebrates that bioethics doesn't aspire only to deeper thinking, but also to better acting. He embraces not only the intellectual aspiration to think deeply about meaning questions that don't admit of final answers, but also the ethical demand to give clear answers to practical questions. To show how to respect both that aspiration and that demand, the book culminates in the description of a process of truly informed consent, in the context of one specific form of using technology to shape our selves: families making decisions about appearance normalizing surgeries for children with atypical bodies.

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

Through the analysis of forty ethical dilemmas drawn from real-life situations, Ethics in Action guides the reader through a process of moral deliberation that leads to the resolution of a variety of moral dilemmas. Fosters critical thinking by evaluating the reasons people give to support their choices and actions Challenges the paradigm of moral relativism that often impedes efforts to resolve moral dilemmas Incorporates international perspectives often lacking in texts published for a U.S. audience

This book provides a multidisciplinary analysis of the potential conflict between a government’s duty to protect children and a parent(s)’ right to raise children in a manner they see fit. Using philosophical, bioethical, and legal analysis, the author engages with key scholars in pediatric decision-making and individual and religious rights theory. Going beyond the parent-child dyad, the author is deeply concerned both with the inteests of the broader society and with the appropriate limits of government interference in the private sphere. The text offers a balance of individual and population interests, maximizing liberty but safeguarding against harm. Bioethics and law professors will therefore be able to use this text for both a foundational overview as well as specific, subject-level analysis. Clinicians such as pediatricians and gynecologists, as well as policy-makers can use this text to achieve balance between these often competing claims. The book is written by a physician with practical and theoretical knowledge of the subject, and deep sympathy for the parental and family perspectives. As such, the book proposes a new way of evaluating parental and state interventions in children's’ healthcare: a refreshing approach and a useful addition to the literature.

The history of medicine and surgery is well documented, but this volume offers the first specific exploration of the treatment of and attitudes towards children with injuries and birth defects through the ages. Popular thought holds that children in ancient times with birth defects faced a short life of abandonment or neglect. Examination of written records from ancient Egypt, India, Greece, and Islam, however, shows that physicians and surgeons have attempted to find remedies to cure ailing youths from the beginning of recorded medical history. These essays document the origins of children's surgery, chronicle the history of children's surgery into modern times, and explore the treatment of the most common visceral birth defects. With contributing authors offering perspectives from a variety of cultures, this extraordinary collection will interest not only medical professionals, but also historians and others in the child care field.

This innovative work argues that a psychological framework of disability is an essential part of developing a more cohesive disability movement. Presenting conceptual ideas which describe psychological dynamics confronting disabled people in an exclusionary and prejudiced world, this volume is an important contribution to the literature. It will interest students and researchers of disability studies.

Drawing upon qualitative material from parents and professionals, including ethnography, narrative inquiry, interviews and focus groups, this book brings together feminist and critical disability studies theories.