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Surgically Shaping Children

Technology, Ethics, and the Pursuit of Normality

edited by Erik Parens

Publication Year: 2006

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

Published by: The Johns Hopkins University Press

Contents

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pp. vii-viii

List of Contributors

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pp. ix-x

Acknowledgments

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pp. xi-xii

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Introduction: Thinking about Surgically Shaping Children

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pp. xiii-xxx

This volume explores the ethical questions that arise when surgery is used to make children look more normal. It grows out of The Hastings Center’s Surgically Shaping Children project, which is, as it were, the child of two other Hastings Center projects I have had the privilege to direct. The first of those projects, on prenatal testing and disability rights, took up the ethical questions that emerge when we selectively abort fetuses shown by prenatal genetic...

PART I: PERSONAL NARRATIVES ABOUT APPEARANCE-NORMALIZING SURGERY

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1. Twisted Lies: My Journey in an Imperfect Body

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pp. 3-12

We are the new couple on the block, our living room skirted by dozens of unpacked cartons. Our neighbors take pity on us, bringing over tuna noodle casserole, cleaning supplies, and paper towels. We have a marriage certificate, a mortgage, one too many small appliances, and a stack of unmailed thank-you notes. I am Sherri, he is Richard. In short, we are typical newlyweds. Typical, that is, except for one tiny detail: in our...

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2. Do I Make You Uncomfortable? Reflections on Using Surgery to Reduce the Distress of Others

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pp. 13-28

The music was loud and people were everywhere. I had been to many parties like this before. A guy walked up to me and asked me to dance. After a few dances, we went somewhere quiet to talk. Things were proceeding in the way they typically did for most young adults at any party. But then it happened again. The twist that presents itself when least expected. “I want to kiss you,” he said moving his face closer to mine. ...

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3. My Shoe Size Stayed the Same: Maintaining a Positive Sense of Identity with Achondroplasia and Limb-Lengthening Surgeries

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pp. 29-42

I was 111/2 years old when I began my first limb-lengthening procedure, commencing a six-year-long process that would end with my gaining 11 inches of height; a proportionately sized body; two torn anterior tibialis tendons as surgical complications; and sixty scars. Several months before I began, I sat with an adolescent girl who had finishedall three procedures, without complications, and listened as my parents and other adults...

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4. The Seduction of the Surgical Fix

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pp. 43-48

As the mother of a child born with the form of dwarfism called achondroplasia, I struggle to let her be who she is and recognize that there are two children growing up: the one I perceive and the one she is—and ultimately all that matters is the one she is. That means not letting my fantasies get in the way, which is harder than it sounds. When our Lily Claire was born ten years ago, everything was confusion: how to...

PART II: TECHNOLOGY AND THE PURSUIT OF NORMALITY

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5. Concepts of Technology and Their Role in Moral Reflection

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pp. 51-67

Most people think of technology as theoretical science’s dull but dutiful companion: a sort of practical Doctor Watson plodding along after science’s intellectually adventurous Sherlock Holmes. Science—so this standard story goes—tells us the odd and difficult truth about things; it exhibits the unexpected stuff out of which the universe is made. Technology, on the other hand, turns that shimmering weave into the solid...

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6. Emily’s Scars: Surgical Shapings, Technoluxe, and Bioethics

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pp. 68-89

Any illusion that The Hastings Center’s Surgically Shaping Children (SSC) project was about other people—people with rare conditions, including achondroplasia (genetic dwarfism), anomalous genitalia, and craniofacial deformities—was lost one day as I went for a walk. I passed a person with a physical characteristic that was normal enough but still precipitated my thinking, “I’m glad my body’s not like that.” And then...

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7. Thoughts on the Desire for Normality

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pp. 90-110

The desire for normality—not what normality is, but our desire for it—is the subjectof this chapter. The various procedures for surgically shaping children that are discussed in this volume all appear to presume that what is normal is desirable, what isnot normal is to be avoided. The price of normalcy and the cost of avoiding what is not normal are high, especially when surgical procedures, often repeated, are...

PART III: THE SURGICAL CONTEXT

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8. To Cut or Not to Cut? A Surgeon’s Perspective on Surgically Shaping Children

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pp. 113-124

I have been privileged to participate in The Hasting Center’s Surgically Shaping Children project in two roles: narrowly, as the surgical expert for the specific discussion of congenital craniofacial anomalies (that is, birth defects of the skull and/or face), and, more generally, as a representative of surgeons and surgery at the working group’s final summation meeting. This chapter has developed out of my presentation at that...

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9. What’s Special about the Surgical Context?

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pp. 125-140

This essay aims to contribute to the understanding—and ultimately improvement—of decision making for surgeries that involve children. I explore the nature of the patient-surgeon relationship in general and, more specifically, the difficulties that arise when the patient is a child. I also describe salient features of the childhood-surgery context, including the often elective, quality-of-life goals of such surgeries and the...

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10. Are We Helping Children? Outcome Assessments in Craniofacial Care

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pp. 141-154

How we answer the question, Are we helping children with craniofacial interventions? depends on how we approach health outcomes. We can measure the size of the scar, but is the child better off? We need a much broader view of health to answer that question. The World Health Organization defines health as “a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity”...

PART IV: CHILDREN AND PARENTS DECIDING ABOUT APPEARANCE-NORMALIZING SURGERY

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11. Who Should Decide and How?

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pp. 157-175

The questions, Who should decide about children’s surgery? and How? involve further questions: Who is informed enough to decide? Who is competent to decide? Who ought to decide? And may competent people choose to refer that responsibility to others? How are decisions about surgery made, and possibly shared? And could we promote more just, benign, and efficacious ways of making decisions about surgically...

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12. The Power of Parents and the Agency of Children

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pp. 176-188

The power relationship between parents and children is necessarily asymmetrical. It is a relationship in which physically, emotionally, and socially vulnerable persons must depend on others to keep them safe, nurture them, and teach them how to live within their society. In this chapter I argue that parents are morally remiss if they do not use the power they have over their children, but then I map out some of the moral...

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13. “In Their Best Interests”: Parents’ Experience of Atypical Genitalia

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pp. 189-210

In a study conducted by psychologist Suzanne Kessler, college students were asked to imagine that they had been born with clitoromegaly, a condition defined as having a clitoris larger than one centimeter at birth. In response to the question as to whether they would have wanted their parents to sanction clitoral surgery if the condition werenot life-threatening, an overwhelming 93 percent of the students reported that they...

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14. Toward Truly Informed Decisions about Appearance-Normalizing Surgeries

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pp. 211-226

Growing up a dwarf, I was not a shy or retiring kid. Being different, I experienced a good deal of attention, both negative and positive. I recall that sometimes adults would ask me, “If there was a pill that would make you tall, would you take it?” As a 10-year-old boy, I knew that I wanted the teasing to stop. As a 15-year-old boy, I just wanted the girls to kiss me. ...

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15. Appearance-Altering Surgery, Children’s Sense of Self, and Parental Love

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pp. 227-252

I am finishing this chapter while on a group tour in another country. During dinner one evening, a member of our group turns to ask whether she is possibly breaching the etiquette of the country we are visiting. She does not expect to become a full-fledged member of the culture and will be returning to the United States in a few weeks, but she would like to make sure she does not needlessly give offense to others. ...

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16. What to Expect when You Have the Child You Weren’t Expecting

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pp. 253-266

I feel that the most useful thing I can do in the context of this volume is to offer to parents a sort of guidebook to the experience of having a child with a noticeable anatomical difference in America today. I say a “guidebook” because, for many parents, having a child with an unusual anatomy is like suddenly finding yourself in a foreign country without knowing the language. And you realize pretty quickly that you’re...

Index

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pp. 267-274


E-ISBN-13: 9780801889165
E-ISBN-10: 0801889162
Print-ISBN-13: 9780801890901
Print-ISBN-10: 080189090X

Page Count: 304
Illustrations: 2 line drawings
Publication Year: 2006

Research Areas

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