Biomedical Engineering Reference
In-Depth Information
The primary focus of these narratives was directed at the experiences of
grown-up women and men who either had a particular genetic disease, were
carriers of a genetic disease or who worried that they or their partner could
be a carrier. This focus also harmonises with the description of hope as a
matter of choice for parents. Grown-up women and men were described
as experiencing or considering life with a certain genetic disease as painful,
as being in need of medical help or as asking for medical technologies that
would help them to avoid a(nother) child with the particular disease.
In the evaluation of these narratives, some interviewees also explained
that it was understandable if certain couples wanted to avoid the birth of a
child with a particular disease. 'Naturally' we want our future child to be
healthy. Who would not want to do so, Simonetta remarked. Through such
statements, interviewees not only described their views on couples' use of
PGD, they also legitimatised couples' use of PGD. Life with genetic disease
could be tragic, it could be avoided, and who would not like a healthy child?
One interviewee also said that though one should have respect for those who
were handicapped in different ways, being handicapped 'was no merit'.
Simonetta not only explained that it was natural to want healthy
children, she also described healthy children as normal children. This was
the case when she commented on the hypothetical story of a mother with
two previous children with a genetic disease who wanted to use PGD for a
third child, wondering that though it was 'ugly' to say so, was there not a
'right to a small slice of normality'? In this context, the normal is to have
children without a certain genetic disease. Her statement that it was ugly to
say so indicated an awareness that this view may be controversial. Still, she
described the wish to have healthy/normal children as natural.
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If the story-line of narratives of life with genetic disease is to be summarised,
there were certain threads that were common to most of these stories, such
as the descriptions of tragedy and pain, of the frustration on behalf of the
interviewees if there was nothing they could do, of the wish to avoid genetic
disease in one's children if possible and, in some narratives, of hope in terms of
the possibility, for some women and men, to choose to use PGD and to implant
embryos without the particular disease. It is also to be noted that there were a
few narratives of life with genetic disease that neither focused on tragedy nor
on hope in terms of the possibility to use PGD. These narratives were told by
the interviewee who had personal, embodied
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experience of genetic disease
and this interviewee emphasised how grateful he was to live.
Narratives of progress
Narratives of progress indicated that there was an on-going technical
progression within medicine. Technologies had been or were being
developed which were, in different senses, described as better than previous
technologies. PGD was described as a psychologically and/or morally easier
means to avoid the birth of a child with a genetic disorder than prenatal
