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Genetics, Disability, and Deafness

John Vickrey Van Cleve, Editor

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Read reviews: Ragged Edge Magazine, Choice, SIGNews, Disability Studies Quarterly.

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From Ragged Edge Magazine, cont’d.

And that’s where the gene called GJB2, which codes for a protein called connexin 26, comes in. There are variations in GJB2 that can cause deafness, and a great many deaf people have those variations in their genes. In fact, as Genetics, Disability, and Deafness contributors Kathleen S. Arnos and Arti Pandya report in “Genes for Deafness and the Genetics Program at Gallaudet University,” in a study involving 737 unrelated deaf individuals, about 22 percent were deaf as a result of GJB2 -- including 42 percent of those with two deaf parents and 32 percent of those with two hearing parents and one or more deaf siblings.

Nance, drawing on work done by Gallaudet College professor Edward Allen Fay about a century ago and on mathematical models that assume assortative rather than random mating, argues that the number of people in America who have connexin 26 deafness is increasing.

One of my favorite insights in Martin Pernick’s The Black Stork is that you don’t need a technology that works to make you wrestle with tricky moral questions -- when must you use it? when may you use it? -- you just have to believe that you have a technology that works.

Connexin 26 makes Bell relevant again today -- because, once again, scientists believe that the reproductive practices of some deaf people will result in an increase in births of deaf children; debates about practices that would produce fewer, or more, deaf children are current again. Worrying about “deaf-mutes marrying deaf-mutes” has been replaced by worrying about people with certain variants of GJB2 commingling their genetic material, about choosing sperm donors, about aborting on the basis of hearing status, and about the use of genetic technology to select which embryos to try to bring to term.


The section on genetics, which was my introduction to connexin 26, comes in the middle of the book, after Louis Menard’s “The Science of Human Nature and the Human Nature of Science” and Nora Groce’s “The Cultural Context of Disability” and the history section, with essays by Brian H. Greenwald, Joseph J. Murray, and John S. Schuchman.

I talk to dead people -- not in the Haley Joel Osment sense, but in the sense that, being much better at interacting with text than at interacting with people, I’m a lot more comfortable working through a “conversation” with

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John Vickrey Van Cleve is Professor Emeritus of History, Gallaudet University, Washington, DC.

ISBN 978-1-56368-576-7, 6 x 9 paperback, 240 pages, tables, figures, photographs, references, index

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