Biomedical Engineering Reference
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of different morals/points can also be identifi ed within a narrative (ibid.).
I focus on the overall moral of the story, articulated when the interviewee
explained how the events told shall be understood, explained and/or valued.
This overall moral was often expressed in the narrative's evaluation. In this
sense, the interviewed gynaecologists and geneticists became 'story-tellers'
(Ettorre 1999).
Three types of narratives
Narratives of life with genetic disease
Within 'narratives of life with genetic disease', interviewees told stories of
patients they had encountered, of members in their own families or, on a few
occasions, their own personal experiences of life with genetic disease. Some
of these narratives contained words such as tragedy or similar value-laden
notions. Professionally, at the PGD clinic, Andrew said, he met with tragedy.
But personally, it was different:
I wouldn't want to have affected children, I certainly wouldn't. I
wouldn't want to have a child who spends a great deal of its life, and
it might be a shortened life or [a life] in contact with hospitals, always
having uncomfortable or painful procedures, being unwell, being unable
to keep up with the others at the same age, different schooling, anything
like that. I couldn't bear to watch my own child have to struggle the
whole way through its life and then probably lose it.
Andrew had relatives who had lost their child at an early age. Losing one's
child, he said, was 'just the worst scenario'. Living with a severe genetic
disease was sometimes described as a 'suffering' and living with a child with
a severe genetic disease was sometimes described as 'distressing'; the death
of a loved one was described as devastating.
Interviewees also articulated frustration and the wish to alter the situation
for the couples concerned in a slightly different story-line within this type
of narrative. These were stories that indicated that life with a genetic disease
could be or was painful, but the stories ended with descriptions of a situation
where some diseases could be avoided or were avoided. The potential
tragedy and pain was spoken of as being able to be minimised through use
of assisted reproductive technologies and PGD, for those to whom these
technologies were available, and who wanted them. These couples could
choose to try to avoid a(nother) child with a genetic disease. Descriptions of
the possible value of disease prevention through selection of embryos were
always conditioned: emphasis was put on the value of being able to prevent
disease if the couple concerned so wished, and not disease prevention as
such.
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