Biomedical Engineering Reference
In-Depth Information
The emphasis on the perspective and the experiences of the person living
with the disease was present in most interviews, but in two slightly different
versions. Sometimes, interviewees emphasised the importance of what I
call
lived experiences
. Such experiences included personal experiences of
close relatives with a genetic disease (whom someone lived with/had lived
with) as well as personal experiences of having a particular genetic disease.
Sometimes, interviewees only referred to the latter sub-category of lived
experiences, the
embodied experiences
,
i.e. personal experiences of a genetic
disease that someone has, in her or his own physical body. A few interviewees
also told narratives that indicated that they doubted that anyone could be
able to - and should - decide what disease might be tragic and painful to live
with except the (future) person with that disease.
The narratives of concern described here resulted in six different concerns
or worries. As seen in the narratives of life with genetic disease and narratives
of progress and as will be discussed in the next section of this chapter, the
availability of informed choice was a main issue and a reason why PGD was
described as positive. Within the narratives of concern much of the concerns/
worries were related to choice - but also to genetic disease. First, within
these narratives, interviewees held choice to be important, but they worried
that choice was
not as informed and free as they thought it should be
. Second,
they worried that there
was no or little possibility to choose
. Third, they
worried that they, as professionals, were pushed in certain directions and
that
patient groups infringed their own choices
. Fourth, they worried that
patients would
ask for PGD for
what they considered as
undesirable uses
.
Fifth, they worried that the
choice was too complicated
for (some) couples
and this made them question the idea of non-advice genetic counselling with
regard to use of PGD. Sixth and fi nally, they were concerned about their
own
inability to understand
life with genetic disease and the diffi culty to fi nd
non-subjective defi nitions of genetic disease.
Underpinnings of the narratives: exploring the fabric
In what senses were disease, normality and choice the fabric of the
narratives? In narratives of life with genetic disease, life with genetic disease
was described as tragic and painful. Tragedies were described as diffi cult to
avoid and particularly so for couples with genetic diseases that could not be
tested for with PGD. Within these narratives, choice was mainly commented
upon in subordinated clauses. Couples were described as having no choice
or having few alternatives to choose between. There were also narratives in
which life with genetic disease was described as tragic and painful, but in
these narratives there was also a means to avoid the tragedies in terms of
the birth of future children with genetic disease. There was hope for those
in need and this hope was primarily framed in the language of choice. Some
couples were given choice and, if so, this was positive.
