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Genetics, Disability, and Deafness

John Vickrey Van Cleve, Editor

Now in Paperback!

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

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From Disability Studies Quarterly

A great divide is beginning to emerge between scientific/medical, media, and perhaps majority community opinion on the issue of screening to determine in utero if an embryo is likely to be born “handicapped” by an inherited condition, compared with the beliefs on this topic of people with disabilities and their advocates (and some scientific/medical, media, and community opinion). On the one hand, many argue that disabilities should not be allowed to occur as they are not “normal” and hence non-functional in society. On the other hand, many argue that people with disabilities always occur as part of “the human condition” and society is enriched by their presence.

This handsomely presented volume provides an overview of many of the issues in contention–largely from the point of view of deafness, but also providing insights for the field of disability generally. Divided into five sections, topics covered include science, culture and human variation (especially Louis Menand on “The Science of Human Nature and the Human Nature of Science”), past eugenic practices vis-à-vis deafness, the genetics of hereditary deafness, and how genetic knowledge may be used in counseling and other fields. There are particularly interesting chapters on the genetic engineering movie world of Gattaca (Christopher Krentz) and from Michael Bérubé on the necessity of democratic discussion in decision-making about disability and “the new genetics.”

“The new genetics” is as close as the volume gets to “neo-eugenics” (the term does not appear in the index), but ever close to the surface of most chapters (and explicit in the chapters in the section “Deafness and Genetics: A Troubled Past,” especially in John Schuchman’s “Deafness and Eugenics in the Nazi Era”) is the possibility of genetic knowledge and engineering being used to prevent the birth of individuals with disabilities–the “slippery slide” argument is never far from sight. The necessity for extensive public discussion of how genetic knowledge shall be used is referred to time and again. Whatever one’s beliefs about screening to select “non-disabled” embryos and abortion of those found to be carrying genes for a disability (Connexin 26 in the case of deafness), several chapters make the case that much public discussion and education is required in cases where viable, happy, and successful lives can be constructed despite the presence of a disability.

Topics of interest are well-covered, though we could have had less about A. G. Bell and deaf marriages causing a “deaf variety of the human race”, topics already well covered for those in the field, and perhaps a more extended overview of the depths to which eugenics sank during the Nazi era would have been useful. Schuchman’s chapter is an all-too-brief overview of his work in this area. Particularly interesting is the report on Middleton’s research on deaf adults’ attitudes towards genetic screening for deafness (mixed feelings are apparent). Nance’s speculations about the possible impact of the Connexin 26 gene on the size of the deaf population runs counter to some evidence about its diminution in the light of cochlear implants and a resurgence of “pure oral” methods of communication. Benign uses of genetic knowledge in counseling are well covered in Arnos and Pandya’s chapter on the genetic counseling program at Gallaudet University.

In sum, the book will be necessary reading for all interested in the genetics and heredity of deafness and the ethical and public policy issues associated with genetic screening and engineering, and useful also for those interested in the latter topics in the disability field generally.

The necessity for public education and discussion on these topics and the thrust of the book is well summed up in two statements–one from John Stuart Mill (quoted by Menand, p. 21), “[we must] bring … that part of … [nature] over which we can exercise control more nearly into conformity with a high standard of justice and goodness”, and another from Krentz (“The Quest for Perfection” in this volume) about “the importance of taking pride in who we are, of embracing difference and disability, and adjusting our attitudes to ensure that everyone is accepted, regardless of their appearance or genetic code, and that everyone is given the chance to succeed. After all, disability is part of being human” (p. 200).

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

$46.95s

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