To the Editor:
Michie and Marteau (1999 [in this issue]) make some valid points in relation to our article on attitudes toward genetic testing for deafness (Middleton et al. 1998). However, they also make some criticisms that we would like to take the opportunity to answer. Michie and Marteau point out that the study sample is likely to be unrepresentative of deaf people. It was acknowledged in our article that the study sample was biased. In fact, a culturally biased sample was chosen deliberately, since it was cultural attitudes that were of interest. Another criticism in their letter is that “participants completed the questionnaires in a highly unusual social context.” Again, it was acknowledged in our article that the “responses may have been influenced by the context within which the questionnaire was distributed,” and “social desirability bias” was cited as a possible confounding factor. The article was the result of a pilot study that, together with other pilot work, contributed to the design of a larger study that has ascertained the attitudes of 1,600 deaf, hard-of-hearing, or deafened adults and hearing individuals with a family history of deafness. From the results of this larger study, it will be possible to see how the sample used in the article fits into a more general sample from the deaf community. Preliminary analysis of the results from the larger study shows that, although the attitudes expressed in our article are more negative than those based on the larger sample, the trends are the same. The results of this larger study are in the process of being written up for publication.
Michie and Marteau also say that we proposed that specialized counselors should be required for every disease and disability. This was not what we suggested. We advocated that language and cultural barriers could be kept to a minimum by the use of deaf genetic counselors to see deaf clients, in the same way that Asian counselors might counsel Asian clients in their own language, recognizing transcultural aspects in the genetic counseling process, rather than just the use of interpreters in this situation. We actually emphasized that it is unrealistic to suggest that only disabled people could counsel disabled clients.
Middleton A, Meuller RF, Hewison J (1999) Reply to Michie and Marteau. American Journal Human Genetics, vol. 65, issue 4, pp 1207-1208