Biomedical Engineering Reference
In-Depth Information
It is noteworthy that it was the possibility to try to avoid genetic disease, if one
so wanted, that was described as important, not disease avoidance as such. Choice
resulted as more important than disease avoidance, even if choice was positive as
a possible means to disease avoidance. Still, the logic within these narratives was
underpinned by the idea that life with genetic disease could be tragic and painful
(compare Shakespeare 1999: 672-5; 2003).
9
These descriptions also harmonise
with certain aspects of what some call 'the medical model' in disability theory:
the tragedy of the individual was emphasised (as opposed to an emphasis on the
failure of a society that disables some people) (Reindal 2000: 89).
10
The emphasis on tragedy and pain in these narratives of life with genetic
disease also, sometimes, resulted in two different uses of normality. First, the
notion of normality was used to make a certain wish legitimate: it was nothing
strange to want to avoid genetic disease in future children. It was a normal/natural
wish that most of us would share. Second, healthy children were also, sometimes,
described as the normal ones. In the latter descriptions, some interviewees used
what some philosophers have labelled a 'naive non-scientifi c usage' of the notion
of normality in medicine: health was associated with normality, disease with
abnormality and health meant absence of disease (Hoedemaekers and ten Have
1999: 539-40).
11
Though this understanding of normality can be used in order to
indicate that normality - i.e. health - is desirable, it is important to note that it is
not necessarily so.
The normality of healthy children and the description of the normality of
wanting to have normal/healthy children begs for further refl ection. 'Lurking in
all genetic theory and practice is the disturbing question of the “normal”', says
feminist theologian Karen Lebacqz. In her view, this question is disturbing if or
when the normal is the basis for a norm of standard for what we should be like and
if those who do not fi t the norm are presumed to be 'inferior, inadequate, in need
of therapy' (1999: 89-90). So it would be particularly disturbing, others explain,
if the normal is associated with the establishment of genetic norms (Wolf 1995:
345-53). Whereas this disturbing question has been focused upon in the literature,
only three interviewees commented upon it, and they did so when they told stories
of future undesirable scenarios of 'designer babies' and alleged 'perfect' societies
in which selection had gone too far (perfection in this story-line was not an ideal
but a threat) - i.e. in narratives of concern of misuses.
12
PGD was only questioned
on the basis that it presumed an undesirable genetic norm in three interviews.
The description of the normal wish to have normal/healthy children can also
evoke the question of what is not normal, what wishes or behaviours do not qualify
as normal? If it is normal to want to have normal children, having 'non-normal'
children when it could be avoided could be regarded as 'non-normal' or 'abnormal'.
However, this view was
not
articulated by the interviewees.
13
Within narratives of
life with genetic disease, it is also noteworthy that it was not the desire to choose
that was described as normal, but the desire to avoid genetic disease.
Choice, genetic disease and normality were threads in narratives of progress
as well. PGD was described as more accurate than previous technologies, less
psychologically painful and morally easier (for some). Furthermore, PGD was
