Biomedical Engineering Reference
In-Depth Information
described as a matter of positive progress since it meant that some couples
were given one more choice. Some couples, who had not considered previous
alternatives as realistic options for them, were given choice and choice was
described as positive if it resulted in the birth of a child without a particular genetic
disease. Choice was
also
described as positive as such (as in the excerpt 'it does
not always help but at least there's something else for them'), independently of
whether it resulted in the birth of a healthy child. As was the case in narratives of
genetic disease, avoidance of genetic disease was never explicitly described as
positive as such.
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The value of choice and disease avoidance (sometimes phrased as disease
prevention) recur in descriptions of genetic counselling in bioethical literature.
Genetic counselling, some suggest, 'does not aim to prevent couples from having
children with genetic diseases. Preventing genetic disorders, although important,
is secondary to good clinical practice, which identifi es couples at risk and by
empathic counselling allows them to make their own informed choice' (Harris
1998: 335). As remarked by Lene Koch and Mette Nordahl-Svendsen (2005), this
presentation results in a distinction between the goals of disease prevention and
informed choice; informed choice is described as primary to disease prevention.
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The results of the analysis of my empirical data concur with this emphasis on
informed choice. Within narratives of progress, provision of choice is described
as primary to disease avoidance, from the medical professionals' point of view.
Here it is also to be noted that there may be a discrepancy between what patients
consider as the important outcome of PGD, what medical professionals consider
as important and what medical professionals believed patients consider important
(such as in Joyce's remark that she thought patients' desired outcome was the
birth of a healthy child whereas she thought it was more important that patients
were given choice).
Narratives of progress showed that provision of choice was described as positive
for professionals. It made their work 'easier'. How can this be understood? In
one reading, which takes medical professional identity as a point of departure,
medical professionals are trained to treat/alleviate disease or promote health. They
fi nd themselves in a situation where people ask for help, where professionals are
unable to treat the disease, but where they can, at least, provide couples with
one more choice. Being able to provide couples with another choice can make it
psychologically easier for professionals to work than if no choices or treatments
could be provided.
In their discussion of genetic counselling, Koch and Nordahl-Svendsen (2005)
suggest that problems need not only make people look for solutions. Solutions
also provide a framework for statement and handling of certain problems. If
applied to the PGD context and situations of some genetic diseases for which
PGD is offered, there is no treatment. There is a technology that can be used to
sort out embryos with some genetic diseases, but obviously this is not treatment in
the ordinary sense. If PGD is a solution to these situations, it is a solution in terms
of choice and not treatment. This can also be a reason why some professionals
suggest that choice is more important than disease avoidance.
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