Biomedical Engineering Reference
In-Depth Information
Gynaecologists and geneticists as storytellers
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10 It has also been suggested that this model should be called the '“harmed
condition” model of disability' (Harris 2000: 99).
As regards attitudes to genetic
diseases, a 36-nation survey of 2,901 geneticists and genetic counsellors showed
that, as a global tendency, many of the interviewees said they would emphasise
negative aspects of genetic diseases, such as Down's syndrome or cystic fi brosis,
so that couples 'will favour termination of pregnancy without suggesting it
directly' (Wertz and Fletcher 1998: 499). Fifty-eight per cent of the 12 geneticist
respondents in Sweden said they would 'emphasize negative aspects so they will
favour termination of pregnancy without suggesting it directly' in the case of
Down's syndrome and cystic fi brosis. Such would be the case for 50 per cent
of the 22 Italian geneticist respondents with regard to Down's syndrome and
for 38 per cent of them with regard to cystic fi brosis. Such was also the case
for 15 per cent of the 102 British geneticist respondents with regard to Down's
syndrome and for 10 per cent of them with regard to cystic fi brosis (Wertz and
Fletcher 1998: 499). For another study of attitudes to genetic diseases, within
four European countries, see also Marteau
et al
. (1994a, 1994b).
11 In scientifi c language, these authors claim, disease is either associated with the
structure and function of the body or parts of the body or it is discussed in terms
of multi-factorial contributive causes. Such a language was also present in the
interviews, but not in relation to discussions of normality.
12 For further exploration of these narratives, see Zeiler (2005).
13 As seen, one interviewee did question this view but he framed it as a questioning
by patients who had used PGD to women and men who had a high risk for a
particular genetic disease, but who did not use PGD: 'I suspect they probably
think that those couples have no right to have an affected child'. The reasoning
of normality can also be further complicated, such as was done when some
interviewees described PGD as a natural technology. If so, there were natural
means to normal children and it was normal to want to use these natural
technologies.
14 When interviewees' described the value of choice, they also often explicitly
distanced themselves from the eugenics of the early twentieth century. At that
time, interviewees commented, the heart of the matter was disease avoidance as
such. Obligatory sterilisations were done in order to avoid the birth of children
with certain diseases or with characteristics that was assumed to be non-desirable
and possible to inherit. Women and (to a lesser extent) men were sterilised and
they had no choice.
15 Koch and Nordahl-Svendsen (2005: 824) also argue that the knowledge
created in genetic counselling situations and 'solutions' encompassed become
the framework in which 'the problems' of being at risk for a genetic condition
are created. Autonomous actors - patients - are created who consent 'to act
responsibly with [disease] prevention as the almost inevitable result'.
16 It can also be noted that, according to the sociologist Tom Shakespeare (1998:
669), it is 'increasingly common' that clinicians use the term 'genetic disease' to
refer to genetic conditions varying from cystic fi brosis to achondroplasia. The
disability movement, Shakespeare says, contests this general labelling.
17 This number varies with different clinics.
18 One interviewee did hold that selection based on the knowledge of the genome
of the particular embryo was ethically problematic and that it was a matter of
going against Nature. Another interviewee did question pre-implantation genetic
screening
on the basis that it may become normal to search for embryos. For an
exploration of this view, see Zeiler (2005).
19 I concur with those who hold that it is becoming more and more important to
help couples discern and analyse their own experiences, values, assumptions and
