Biomedical Engineering Reference
In-Depth Information
made the work 'really diffi cult'. In the narrative's evaluation, this interviewee
concluded that 'at least for some of them, now there's something to offer'. In
Andrew's view, this was positive - even if PGD did not always help. Technical
progression was positive even if it did not result in the birth of a healthy,
biological child. It provided certain couples with more or better alternatives
to choose between. In a similar focus on choice as the positive consequence
of the availability of PGD, Joyce explained that PGD was valuable if couples
received a healthy child but that it was 'more important' that couples were
given a choice. She explained that 'usually most people's desired outcome is
the birth of a healthy child but what's more important to me, I think, is the
fact that people are given a choice'.
Narratives of concern
The logic derived from narratives of life with genetic disease and narratives
of progress - that life with genetic disease could be tragic, that some couples
had a medical problem that needed to be met, that PGD meant progress and
that it was a means to meet the medical need - was questioned in narratives of
concern. Within this category of narratives, interviewees told stories of risks
related to the offer or use of IVF/PGD, such as the risk of physical pain and
psychological distress due to the treatments, risk of misdiagnosis or risks that
couples were not given accurate information of the treatments. Interviewees
also told stories of actual, complicating circumstances (that was not a matter
of risks) such as in the story of a woman and man who used IVF and PGD
in order to test for and avoid a particular genetic disease in their offspring,
but the child born had another disease which had not been tested for and
the woman and man had not realised that this could be the case. Finally,
interviewees told stories of exaggerated uses and misuses of the technology,
present and future, such as the story in which professionals offered PGD for
what they later considered conditions for which PGD should not have been
used, typically expressed by one interviewee who said that 'we got caught up
in the enthusiasm of PGD actually working, it seemed fi ne at that time. But
it isn't fi ne, really'.
These narratives resulted in interviewees' concern of how to describe and
evaluate use of the technology. As a fi rst example of a narrative of concern,
concern was the result of the perceived risk that women and men did not get
accurate information about PGD or about alternatives to PGD.
Joyce was one of the interviewees who told her personal story of IVF
experiences. She also described her frustration with how IVF and PGD were
presented in British media and she told stories of risks that couples were
given inaccurate information. In her view, what had happened was that
people have been sold the good news stories. It's been a lot of television
programs on this, and it's often been wrongly portrayed as the only way
that a couple can have a healthy baby when faced with a genetic risk.
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