Biomedical Engineering Reference
In-Depth Information
Choice provision can be seen as an important element of the 'work-place
ideology' in reproductive genetics (compare Bosk 1993). This leads to other
questions. If treatment or alleviation of disease cannot be seen as the goal of
PGD, should provision of choice qualify as a desirable and acceptable goal -
not only of PGD - but of reproductive genetics? What kind of choices should
be provided and why? What strategies can be developed to ensure that those
who do not wish to choose to take a stand can be given this opportunity - at
least as soon as the professionals realise the couples' wish? If this is not done,
we need also to ask if we are
obliged
to understand and to enact our lives in
terms of choice, at least in reproductive genetics?
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Obviously, choices may
or may not be positive, they may be morally complex and psychologically
painful to the extent that we do not wish to choose.
It seems as if the very existence of PGD results in a situation that, in part,
promotes something that is described as valuable, namely choice, and, in
part, does not. If so, it is understandable that the existence of PGD evokes
ambivalence.
The narratives that I have explored are only narratives told by medical
professionals. The perspective of women and men undergoing PGD
treatment has been analysed in an ethnographic study by Sarah Franklin
and Celia Roberts. When the results of these studies are compared, two
similarities emerge. First, in both projects, respondents emphasise that the
use of PGD was not easy. Roberts and Franklin concluded that many patients
were eager to distinguish the choice to use PGD from trivial '''consumer”
or narcissistic' choices. Instead, the choice to use PGD was a 'choice out of
necessity' (Roberts and Franklin 2004). In a related manner, several of my
interviewees underlined that the choice to use PGD was by no means easy
for couples. The description of assisted reproductive technologies and PGD
as a 'last straw to clutch at', as one interviewee put it, also concurs with the
description of 'last chance babies' in studies of the experiences and views of
women undergoing IVF (Modell 1989; Franklin 1997).
However, if IVF or IVF and PGD should qualify as a last straw or a last
chance, this implies either that what is discussed is only biological children
or that (if present in a general discussion about having children) adoption is
not an acceptable or possible alternative. Second, on the basis of an analysis
of the many ways in which PGD 'patients' got to PGD clinics, the reasons
why they did so, how they experienced the procedures involved in PGD
and how they moved on from PGD, Franklin and Roberts (forthcoming)
conclude that PGD seems to be a site of extreme ambivalence in terms of
how to understand, describe and value the technology.
Acknowledgements
Special thanks to the anonymous interviewees in the project. I am also grateful
to the Swedish ELSA-program who fi nanced this project as a whole, to the
Church of Sweden who fi nanced the research stay in Italy during which
