Journal of Deaf Studies and Deaf Education Advance Access originally published online on July 6, 2005
The Journal of Deaf Studies and Deaf Education 2005 10(4):426-441; doi:10.1093/deafed/eni040
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Ethics and Deafness |
In One's Own Image: Ethics and the Reproduction of Deafness
Renwick College, Royal Institute for Deaf and Blind Children, University of Newcastle
The ethics of the use of genetic screening and reproductive technologies to select against and for deafness is presented. It is argued that insofar as deafness is a disability it is ethical to act in such a way as to avoid the conception or birth of children with genetic or congenital deafness. The discovery and recognition of signing deaf communities as cultural and linguistic communities (minorities) does not alter this basic ethical position, although the consequences of widespread application of this technology appears destined to lead to the eventual disappearance of these communities. The argument that acting to avoid deafness is unethical because it will lead to the elimination of a linguistic or cultural group (genocide or ethnocide) or conversely that acting to ensure deafness is ethical, if not praiseworthy, can only be sustained if deafness is not regarded as a disability at all. I argue that the premise that deafness is not a disability of some sort is false and thus the claim that genetic selection against deafness is unethical is untenable.
1 I deliberately do not take up the issue of homosexuality in this context partly because of space limitations and partly because I have dealt with this elsewhere (Johnston, 1994). 2 Of course, I hope the reader will take it as given that medical intervention is not ethical if by so doing one seriously harms an individual or greatly increases, if not actually creates, distress. For example, I do not consider it ethical to deny a deaf child a real and accessible first (signed) language at cognitively, emotionally, and socially appropriate and essential times in their early development either as a part of a so-called habilitation program associated with a cochlear implant or as a matter of "principle" (contrary to all evidence) that it is essential for the development of the best possible oral/aural skills. 3 I qualify avoidable because unless there was actually a possible, real, and effective method of genetic correction (e.g., gene therapy) for a particular identified disabling condition at the time of conception (the science is still, I believe, in its infancy today), it would not really have been avoidable at all. That is, rather than being the same person without the disability, the person in question would simply never have existed (never having been conceived, never having been implanted if conceived in vitro, or actually having been aborted when first identified soon after conception). 4 It should be remembered that in the study by Middleton (2004) these hearing people had either a deaf parent or a deaf child. Overall, one might therefore expect their attitudes towards deaf people to be much more positive than that of hearing people with no experience, and perhaps fear, of deafness. This may partly explain the lower interest in genetic testing in this group. 5 On the questions of HIV/AIDS and homosexuality and their relevance to the discussion of deafness, genetics, and legal sanction, the reader will find by consulting Johnston (1994) that, as with deafness, I am hardly an outsider busying myself, inappropriately, with the lives of others. Correspondence should be sent to Trevor Johnston, Department of Linguistics, Macquarie University, Sydney 2124, NSW, Australia (e-mail: trevor.johnston{at}ling.mq.edu.au).
Received April 10, 2005; revised May 12, 2005; accepted May 14, 2005
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