Biomedical Engineering Reference
In-Depth Information
Within narratives of progress, the thread of normality entered the narratives in
the form of comments as in phrases 'the baby being born, that they'd aborted, was
probably normal'. When this was done, normality was used in order to indicate that
the child had not had the particular disease that parents wanted to avoid. However,
if normality is linked to health as was sometimes done by the interviewees, this
can result in images of 'normal' women and men (without 'genetic problems')
as well as of 'normal patients' (families with a genetic problem) (Ettorre 1999:
544). This being the case, it is the 'normal patients' who are described as needing
PGD.
Finally, narratives of concern implied a questioning of the logic derived from
the other narratives - did PGD really mean progress, was life with genetic disease
tragic, had these patients a need that medical professionals could meet in a desirable
and positive way - and the questioning, they said, made them ambivalent in terms
of how to describe and evaluate use of PGD. As seen, narratives of concern resulted
in a number of concerns on behalf of the medical professionals and many of these
concerns were related to choice. If, as I have said, PGD cannot be seen as a matter
of treatment but only as a matter of provision of choice (one more alternative, a
psychologically and morally better alternative for some), it is understandable that
choice is given a crucial function in many of the narratives.
Choice was described as important in narratives in which interviewees said
they wondered if couples 'really' could choose (there were hampering infl uences,
which made choice diffi cult and lack of real choice was considered as a problem).
A certain choice had also become non-optional when couples could no longer
choose not to choose and this was seen as problematic and as a reason for
hesitance.
Within some of the narratives of concern, genetic disease was a main thread.
This was the case when interviewees told stories that made them question their own
ability to understand and evaluate life with genetic disease. These narratives also
made them question the very possibility for non-subjective defi nitions of genetic
disease - and in the long run - whether defi nitions of genetic diseases could and/
or should guide the decision of what diseases to test for and which embryos to sort
out. Interestingly, these concerns were, again, related to choice. Which embryos
should be allowed to be sorted out - i.e. not chosen for implantation - and who
should decide which embryos were allowed to be sorted out, for which genetic
conditions? Who should decide if not those who were able to understand the
situation for those women, men and children who lived with a particular genetic
disease, i.e. these people themselves? At the same time, some interviewees were
concerned that 'people' would like to use PGD for genetic conditions that they, as
professionals, did not think was desirable.
Some narratives of concern also contained normality as a thread. This was the
case in stories of future undesirable scenarios which interviewees described as
worrying and as reasons for their concern and ambivalence. Normality was also
present in some narratives of concern, in a different and not so explicit sense than
the ones discussed so far. As seen, some of the narratives of concern focused on
risks of different kinds, there were physical and psychological risks for women
