Genetics, Disability, and Deafness

PART 4 THE USES OF GENETIC KNOWLEDGE

PA R T 4 THE USES OF GENETIC KNOWLEDGE INTRODUCTION 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 authors include scientists, genetics counselors, an anthropologist, and a science writer, Mark Willis, whose approach and conclusions are stark and personal. Lacking the distance from his subject—the “objectivity”— that the other authors in this section have, Willis states that if new studies of genetics are used to identify an “emerging genetic underclass ,” as another writer has claimed, then he could qualify for “class president or class clown” because of his genetic characteristics, his disabilities. Kathleen Arnos and Arti Pandya offer a summary of genetic science related to deafness and then develop the argument for the genetic testing , evaluation, and counseling of deaf people. They describe how these 107 actions can be done in a culturally sensitive way that privileges neither deafness nor hearing, and they review two decades of experience with genetic counseling at Gallaudet University. They also provide data about deaf Americans’ attitudes toward bearing deaf children and the abortion of fetuses on the basis of hearing status. Perhaps the most detailed study of attitudes related to genetic issues, however, is Anna Middleton’s work done in England, which she summarizes in her contribution “Deaf and Hearing Adults’ Attitudes toward Genetic Testing for Deafness.” Middleton’s large study covered various groups of hearing and deaf people, including among the latter those who would be identified as culturally deaf and those who saw themselves as audiologically deaf but culturally hearing. She found that deaf people are more likely than hearing people to have negative attitudes toward genetic testing, though not for exactly the same reason as Willis suggests when writing about his own experience as a disabled person. Middleton also discovered, without surprise, that hearing people are much more likely than deaf people to consider aborting a fetus because of its likely deafness. Finally, Middleton raises ethical issues that everyone involved in genetic diagnosis and counseling must confront. She comments on both an Australian couple, who screened embryos before implantation and eliminated those carrying two copies of the connexin 26 mutation to avoid having a deaf child, and an American lesbian couple, who sought a deaf donor for artificial insemination to increase the chances of producing a deaf child, suggesting that thoughtful approaches to genetic engineering will not produce social consensus, at least in with respect to deafness. Shifra Kisch does not directly approach ethical questions but asks what happens when a traditional community with a high rate of genetic deafness encounters scientific explanations for the anomaly and is offered medically based intervention strategies. She analyzes the language used by a small Bedouin community in the Negev desert where this has happened . She finds that the group she has studied explains deafness in complex and sometimes contradictory ways as they reconcile traditional 108 Part 4 beliefs with scientific demands. Kisch’s discussion brings to mind both Joseph Murray, whose essay earlier in this volume discussed the attitudes of deaf people in the United States and Europe to deaf-deaf marriages, when she writes that “people in the community consider many factors other than the avoidance of one specific genetic risk in seeking a marriage partner,” and Nora Groce, whose study Everyone Here Spoke Sign Language described another genetically isolated community with a high prevalence of deafness. Willis’s essay, by contrast with the others, is deeply personally, recounting his experiences and those of his family members with disabilities and genetic testing. Like the deaf people of Middleton’s survey and the Bedouin community Kisch examined, he is skeptical about genetic testing related to his blindness (though not related to his heart disease), its value, and whether he wishes to participate—to be a guinea pig, in his words—in research studies. Like many culturally deaf people and others with disabilities, Willis writes that he does “not experience vision loss as a disease. It is a different way of perceiving the world.” Rather than focus on medical interventions or genetic fixes, he writes, “I think of myself as socially blind; the deficits associated with my blindness result more from society’s limitations than from a disease process active in my body.” One might conclude, therefore, that social investment in genetic studies should be tempered...