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Journal news and reviews: January 2010

19 January 2010

FEATURED COMMENTARY:

Genetic selection for deafness: the views of hearing children of deaf adults

Authors: Mand, C; Duncan, RE; Gillam, L; Collins, V; Delatycki, MB

JOURNAL OF MEDICAL ETHICS 35 (12): 722-728 DEC 2009

This paper draws on the well known story of deaf couple Sharon Duchesneau and Candice McCullough who purposefully sought to maximise their chances of giving birth to a deaf child by seeking a sperm donor likely to produce a deaf child (here there was a 50 per cent chance that their child would be deaf). However, rather than another opinion piece this paper draws on empirical data gathered from interviews with hearing children of deaf adults (CODAs).

Before entering into the details of the current study the paper rehearses many of the discussions around and comparisons between the medical and social models of deafness, together with a brief outline of the two main selection methods; prenatal diagnosis (PND) followed by selective termination (here if the mutation for deafness is not found) or preimplantation genetic diagnosis (PGD). Consequently I will not review these arguments here.

The paper then turns to its main thrust; the views of CODAs regarding the use of PGD to make selective reproductive choices regarding deafness. Using exploratory interviews with 4 CODAs the researchers then developed a survey. Participants were users of the CODA International listserves. The remainder of the paper focuses on the responses to the questionnaire.

At this point one has to query the use of semi structured interviews and the role they played. Little is mentioned about the content of these, or the way in which they informed the questionnaire. Indeed the use of open questions within the survey itself suggests that the authors are unclear as to their goals: to generate quantitative data on trends or pervasiveness of attitudes, or to develop a qualitative analysis of the issues that CODAs raise when talking about PGD. The use of open questions, without the ability to probe responses appears to serve neither purpose well. Furthermore, the sample population of a specific organization limits the generalisability of the results for, as the authors themselves state, “It is likely that those who access these listserves identify, at least to some extent, with the deaf community.” (p723). Other methodological features are problematic. There is no accurate response rate as the invite email was sent to”Approximately 300” individuals, although there is no suggestion of how close to this figure the actual number was. In addition, with a response rate of 22% and some potentially skewed demographics one would expect a comparison with the population from which the sample was drawn in order to establish an idea of it’s representativeness. Yet none is forthcoming. This could be particularly pertinent given that none of the respondents had a preference for deaf children.

The finding that none of the respondents had a preference for deaf children, and that 72% had no preference is reflected in the finding that over 77% of respondents did not think either PGD or PND were appropriate interventions to select a deaf child. Again the bluntness of the survey method is revealed when parents are asked whether PGD or PND should be made available to the wider public. The inclusion of both aspects removes the opportunity to agree with one and not the other and is unclear. Indeed most responded (60.6%) that the technologies should not be available, yet the quotations provided seem to relate more to the selection against deafness and views that deafness is not a defect.

Finally the paper considers responses relating the individuals’ experience of growing up as a CODA. These responses are coded by the authors into Four broad themes:

(1) a negative experience either (a) because of identity confusion or (b) because of increased responsibility of acting as an interpreter for parents, with an associated loss of childhood; (2) a positive experience; (3) mixed feelings surrounding personal experience and (4) a neutral experience.” (p725)

The authors conclude that the views of CODAs are similar to those of deaf adults in that:

(1) the views of CODAs about deafness are similar to those of deaf adults; (2) CODAs have a similar (lack of) preference regarding the hearing status of their children as deaf adults; (3) CODAs have a high level of disapproval of genetic technologies to select for or against deafness; and (4) CODAs attach significance to the match between the hearing status of parent and child.” (p725)

It is the view of this author that the data presented belies much of what was collected (interested readers can find the full questionnaire at http://www.mcri.edu.au/CODA/). Thus for example there was no consideration of the responses by sex, age, country of origin or education level. All of which would be standard analyses. One could certainly imagine that sex could be an important determinant in perspectives on PND followed by selective termination. Other examples include the fact that data was collected regarding the respondents familiarity with the technologies and level with which they engaged with the D/deaf community. Again, one could suggest that these could be important determinants of attitudes, yet neither are considered.

As already pointed out, the questions would appear more suited to analysis by qualitative methods yet one feels that the method was selected for its ability to gather participants. For whilst the researchers were based in Victoria, Australia, only 9 (13.6%) of respondents resided here, the vast majority (65.2%) being in the USA. Consequently the electronic questionnaire appears to have been a means to an end, when perhaps an alternative sample frame may have been better.

Despite these criticisms the paper sheds light on an under researched area that would benefit from further, perhaps qualitative, analysis. Furthermore, the consistency with previous research with deaf adults is also of interest and suggests that the purposive selection of deaf children is perhaps a minority perspective.

Comments and thoughts welcome as always.

Stuart

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