Biomedical Engineering Reference
In-Depth Information
diagnosis and selective termination of pregnancy. It was described as
technically better than technologies for genetic diagnosis of foetuses. It was
also described as positive since it meant that some couples were given choice
and the possibility of (some) reproductive control, independently of whether
PGD resulted in the birth of a healthy child. There was something to offer to
patients and this was described as positive also for the interviewees themselves
as professionals. When taken together, narratives of life with genetic disease
and narratives of progress resulted in a certain logic. There were couples
who faced tragic situations (couples who had a 'genuine need' for PGD as
one of the British interviewees phrased it) and medical professionals could
help some of those in need through the provision of a new, important and
helpful diagnostic method.
Interviewees described the difference between (different) previous and
present situations in detail. As a general tendency, previous situations, situations
where there was no diagnostic method available or the early prenatal diagnosis
situation, were depicted as diffi cult, terrible and in different senses undesirable
whereas the present situation, the PGD-situation, was better (though not
unproblematic). When this contrast was given, focus was directed at the
technical progress and the positive consequences of this progress.
In the early prenatal diagnosis situation, in the 1950s, some interviewees
explained, there were no choices. 7 Others said that there were choices but
that these were painful. These situations were 'horrifi c' in Joyce's vocabulary.
Joyce explained that some women did not dare to become pregnant since they
suspected that they were carriers of a genetic disease. Others, who expected
either themselves or their partners to be carriers of a severe x-bound genetic
disease, would terminate any male pregnancy in order to escape the risk of
giving birth to a severely sick son. Daughters were born, this interviewee
recalled, since they would either be non-affected or be carriers. Joyce also
told the story of some of the women she met in counselling, who had only 10
per cent or 20 per cent risk of being carriers of a particular genetic disease.
'You knew,' she said, 'and they knew, that the baby that they'd aborted was
probably normal. They just couldn't take that chance and that was awful, I
mean, it was so tragic for them'. In the narrative's evaluation, Ann concluded
that 'sometimes' she 'wanted to scream at them, take your chances, it might
be all right. But of course, you cannot say such things'.
Different kinds of prenatal diagnoses represented the fi rst steps in the stair
of progression; more and more accurate kinds of methods were described
as being developed, which allowed the women concerned to plan future
pregnancies to an extent that had not been possible before. As narratives of
progress unfolded, further progress was described as expected.
Joyce's narrative of progress did not encompass PGD as a clear matter of
progress, but other interviewees did. The availability of PGD was described
as having positive consequences for women and men at high risk for genetic
diseases. There was a technology that could meet the needs of those couples.
It was also, sometimes, described as having positive consequences for
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