Genetics, Disability, and Deafness

CONTENTS

CONTENTS Introduction vii Part 1 SCIENCE, CULTURE, AND 1 HUMAN VARIATION The Science of Human Nature and 5 the Human Nature of Science Louis Menand The Cultural Context of Disability 23 Nora Groce Part 2 DEAFNESS AND GENETICS: 31 A TROUBLED PAST The Real “Toll” of A. G. Bell: 35 Lessons about Eugenics Brian H. Greenwald “True Love and Sympathy”: 42 The Deaf-Deaf Marriages Debate in Transatlantic Perspective Joseph J. Murray Deafness and Eugenics in the Nazi Era 72 John S. Schuchman v Part 3 THE SCIENCE OF 79 GENETIC DEAFNESS The Complexity of Hearing Loss from 81 a Genetics Perspective Orit Dagan and Karen B. Avraham The Epidemiology of Hereditary Deafness: 94 The Impact of Connexion 26 on the Size and Structure of the Deaf Community Walter E. Nance Part 4 THE USES OF GENETIC KNOWLEDGE 107 Genes for Deafness and the Genetics Program at 111 Gallaudet University Kathleen S. Arnos and Arti Pandya Deaf and Hearing Adults’ Attitudes toward 127 Genetic Testing for Deafness Anna Middleton Negotiating (Genetic) Deafness in a 148 Bedouin Community Shifra Kisch Not This Pig: Dignity, Imagination, and 174 Informed Consent Mark Willis Part 5 AN ERA DEFINED BY GENOMICS 187 Frankenstein, Gattaca, and the Quest 189 for Perfection Christopher Krentz Disability, Democracy, and the New Genetics 202 Michael Bérubé List of Contributors 221 Index 223 vi CONTENTS ...