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Recent advances in genetics have revealed that over 60 genes are involved in various kinds of inherited deafness. As a result it is now becoming possible to offer genetic testing for some forms of inherited deafness but, given that it is not a lethal condition but a disability with which many live satisfactory and successful lives, do deaf people want such tests? The medical view, probably shared by many hearing people, is that deafness is a condition which should be treated and, if possible, cured. However, there is a sizeable deaf community which views deafness as something to be understood and preserved. These people have already shown resistance to the use of cochlear implants(1).
A recent survey of deaf adults attending a conference on the “Deaf Nation” shows that a large majority of these people see genetics as a similar threat to their community(2). Well over half of them thought that genetic testing for deafness would do more harm than good and nearly half think that its potential use devalued deaf people. Only 16 per cent would even consider testing for deafness in pregnancy and some of these said they would prefer to have deaf children.
It would seem from this survey that people with inherited deafness are less than enthusiastic about the prospect of genetic testing for their conditions. There are, however, a number of caveats. First, the number surveyed was small, just 87. It is estimated that there are about 70,000 deaf people in the United Kingdom. Second, the respondents are clearly a group of people with a particularly high interest in their deafness and its social consequences. They may, or may not, be representative of deaf people as a whole. Third, this may just be an immediate, emotional response to something new and views could change over time.
What does seem clear, however, is that as tests for inherited deafness become available they will not necessarily always be requested in order to prevent the birth of a deaf child but the exact opposite. This survey is a timely reminder that the end results of advances in genetic testing may, at times, be quite different from the obvious or expected.
References:
(1) Gibson, W P R, “Opposition from deaf groups to the cochlear implant” Med. J. Aust. (1991) vol 155, 212-214.
(2) Middleton, A, Hewison, J, and Mueller, R F, “Attitudes of Deaf Adults toward Genetic Testing for Hereditary Deafness” Am. J. Hum. Genet. (1998) vol 63, 1175-1180.
John Timson