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Genetics, Disability, and Deafness

John Vickrey Van Cleve, Editor

Publication Year: 2004

Drawn from the Genetics, Disability and Deafness Conference at Gallaudet University in 2003, this trenchant volume brings together 13 essays from science, history, and the humanities, history and the present, to show the many ways that disability, deafness, and the new genetics interact and what that interaction means for society. Pulitzer-prize-winning author Louis Menand begins this volume by expressing the position shared by most authors in this wide-ranging forum—the belief in the value of human diversity and skepticism of actions that could eliminate it through modification of the human genome. Nora Groce creates an interpretive framework for discussing the relationship between culture and disability. From the historical perspective, Brian H. Greenwald comments upon the real “toll” taken by A. G. Bell’s insistence upon oralism, and Joseph J. Murray recounts the 19th century debate over whether deaf-deaf marriages should be encouraged. John S. Schuchman’s chilling account of deafness and eugenics in the Nazi era adds wrenching reinforcement to the impetus to include disabled people in genetics debates. Mark Willis illustrates the complexity of genetic alterations through his reaction to his own genetic makeup, in that he is happy to combat his heart disease with genetic tools but refuses to participate in studies about his blindness, which he considers a rich variation in human experience. Anna Middleton describes widely reported examples of couples attempting to use genetic knowledge and technology both to select for and against a gene that causes deafness. Chapters by Orit Dagan, Karen B. Avraham, Kathleen S. Arnos, and Arti Pandya elucidate the promise of current research to clarify the complexity and choices presented by breakthroughs in genetic engineering. In his essay on the epidemiology of inherited deafness, geneticist Walter E. Nance emphasizes the importance of science in offering individuals knowledge from which they can fashion their own decisions. Christopher Krentz reviews past and contemporary fictional accounts of human alteration that raise moral questions about the ever-continuing search for human perfection. Michael Bérubé concludes this extraordinary collection with his forceful argument that disability should be considered democratically in this era of new genetics to ensure the full participation of disabled people themselves in all decisions that might affect them.

Published by: Gallaudet University Press

Title Page, Copyright Page

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CONTENTS

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pp. v-vi

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INTRODUCTION

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pp. vii-

Disability theorists have argued since the late-twentieth century that disability is a social construct and that cultural and political decisions, rather than biological characteristics, restrict their full and complete...

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PART1 SCIENCE, CULTURE, AND HUMAN VARIATION

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pp. 1-4

Louis Menand and Nora Groce, the authors of the first two essays in this book, are both well known—Menand for The Metaphysical Club and Groce for Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard.1 Despite profound differences in their approaches...

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The Science of Human Nature and the Human Nature of Science

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pp. 5-22

In 1889, the German biologist August Weissmann showed that mice whose tails are cut off do not produce short-tailed offspring. It was a step forward for science, but a step backward for civilization. Weissmann’s discovery was good for science because, contrary to...

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The Cultural Context of Disability

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pp. 23-30

Disability is a universal—in all societies, through all ages, individuals have been born with or have acquired disabilities. The lives of these individuals, however, will in large measure be determined not...

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PART 2 DEAFNESS AND GENETICS: A TROUBLED PAST

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pp. 31-34

Historically, the link between genetics and deaf people was provided by eugenics, by the attempt to “improve” society through the elimination of particular genes believed to be deleterious to social progress. American...

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The Real “Toll” of A. G. Bell: Lessons about Eugenics

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pp. 35-41

The relationship between Alexander Graham Bell and other eugenicists during the late-nineteenth and early-twentieth centuries is worth studying to understand the intertwining of deafness and eugenics in early-twentieth-century America. I will approach this subject by...

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True Love and Sympathy”: The Deaf-Deaf Marriages Debate in Transatlantic Perspective

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pp. 42-71

“I desire to draw attention to the fact that in this country deaf-mutes marry deaf-mutes,” said Alexander Graham Bell in his opening presentation to the November 1883 session of the American National Academy of Sciences.1 The enormity of this fact “consumed the entire...

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Deafness and Eugenics in the Nazi Era

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pp. 72-78

Adolph Hitler became the Chancellor of Germany in January 1933. A short time earlier, the German deaf community, represented by the Reich Union of the Deaf of Germany (REGEDE), produced an educational film Verkannte Menschen (Misjudged People).1...

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PART 3 THE SCIENCE OF 79 GENETIC DEAFNESS

Genetics and disability began to interact in new ways in the late-twentieth century, as the Human Genome Project identified all the genes humans carry and mapped the sequences of chemicals that determine genetic....

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The Complexity of Hearing Loss from a Genetics Perspective

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pp. 81-93

Molecular biology has provided tremendous tools for answering biological questions in the past twenty-five years. Today, we have had a revolution in this area with the Human Genome Project and the sequencing of the human genome—the identification of...

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The Epidemiology of Hereditary Deafness: The Impact of Connexion on the Size and Structure of the Deaf Community

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pp. 94-106

This paper will discuss briefly what we now know about the causes of deafness and how they can change with time. It will not dwell upon the many different forms of genetic deafness that have been identified as part of the Human Genome Project, but it will review what is...

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PART 4 THE USES OF GENETIC KNOWLEDGE

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pp. 107-110

The essays in this section demonstrate the intersection of genetic science and the lives of people who are labeled deaf or disabled, and they do so from widely divergent disciplinary and personal perspectives. The...

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Genes for Deafness and the Genetics Program at Gallaudet University

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pp. 111-126

At least 1 in 1,000 newborn infants has severe to profound deafness, and genetic factors cause at least 50–60 percent of these cases (Marazita et al. 1993). Hereditary deafness is not a single entity; more than 400 forms are known to exist. Given that there are fewer than...

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Deaf and Hearing Adults’ Attitudes toward Genetic Testing for Deafness

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pp. 127-147

Genetic factors play a major role in the development of both congenital and late-onset deafness (Cohen and Gorlin 1995). More than 120 different genetic loci involved with deafness have been identified over the past ten years (Van Camp and Smith 2004),...

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Negotiating (Genetic) Deafness in a Bedouin Community

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pp. 148-173

In the winter of 1995, I became acquainted with the inhabitants of a Bedouin settlement in the Negev Desert of Israel. These people, whom I refer to as Abu-Shara or As-Sharat, after their common ancestor, Abu-Shara, are all of common descent.1 This group, now...

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Not This Pig: Dignity, Imagination, and Informed Consent

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pp. 174-186

In the heyday of eugenics in the 1920s and 30s, you could not avoid a figure of speech that I will call the “litany of defectives.” You would find it in college biology texts and popular magazine stories...

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PART 5 AN ERA DEFINED BY GENOMICS

The final two essays in this collection look at the broad social and political consequences of genetic research and the place of disability in the popular imagination and in government policy. Both challenge the...

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Frankenstein, Gattaca, and the Quest for Perfection

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pp. 189-201

Fifty years ago, Francis Crick and James Watson discovered the structure of DNA, helping to launch a scientific revolution that is affecting many aspects of our lives. The list of developments is both exciting and a bit unsettling. Perhaps most encouraging, scientists agree that...

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Disability, Democracy, and the New Genetics

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pp. 202-220

In this essay, I will try to suggest ways of thinking about biotechnology and disability that are compatible with democratic values. I believe there is no disputing that we have entered an era defined by genomics, an era in which our capacity for manipulating genetic...

CONTRIBUTORS

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pp. 221-222

INDEX

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pp. 223-228


E-ISBN-13: 9781563682797
E-ISBN-10: 1563682796
Print-ISBN-13: 9781563683077
Print-ISBN-10: 1563683075

Page Count: 240
Illustrations: 4 tables, 8 figures, 5 photographs
Publication Year: 2004