Biomedical Engineering Reference
In-Depth Information
expected to confront in their lives, and they're faced with ethical
questions that in many ways they're really unprepared to be able to face.
I think they become swamped by it sometimes. Suddenly they have to
think within a very short time-scale as well.
In this interviewee's view, PGD evoked more moral questions than most
people met during a lifetime and this during a restricted period. The risk of
information overload was present, in the sense that too much information was
given and that information also meant that a number of complex moral issues
had to be addressed. Furthermore (as seen in the beginning of the excerpt),
being informed about PGD was not a choice. This was problematic, couples
could no longer choose not to choose, even though they might wish to. This
idea was articulated in a particularly clear way by another interviewee, Alva.
Information forced couples into a situation of choice in which they had to
face questions such as should they listen to the information, how should
they judge the information and should they base their decisions on it? In
Alva's view, 'the problem' of choosing PGD was 'that you do not choose
information'. 'It sounds as if we inform very innocently and most people
ask for information', she refl ected, 'but there are people who wished that
they had not needed to choose'. Information given precluded the possibility
of choosing not to know and not to choose and in this sense it conveyed
restrictions on what couples could and would choose.
Finally, there were narratives that highlighted interviewees' own
uncertainty concerning how to interpret others' experiences of life with
genetic disease. This fi rst uncertainty was often related to a second one: the
uncertainty of whether there were any non-subjective defi nitions of genetic
disease that could be used in the discussion of what diseases to search for
with PGD. These stories highlighted actual, complicating aspects of the offer
of PGD. How should it be described and for which genetic diseases should
it be offered?
Simonetta was one of the interviewees who told a story that highlighted
both of the above-described uncertainties. She told the life story of Michel
Petrucciani, a jazz musician with a rare genetic disease that made his bones
break continually, with resulting malformations. Petrucciani, Simonetta said,
was not more than one metre tall and he had serious health problems. He
died because of a respiration crisis. Still, she said, 'he had chosen to give
birth to a male child, affected as he was. […] I don't want a child with his
disease, I don't, but he existed and he has done great things'.
Throughout this narrative, Simonetta clarifi ed diffi culties in assessing life
with genetic disease. In the narrative's evaluation, she explained that she
would not like to have a child with the disease, but that Petrucciani, who had
that experience, did. She also explained that the story of Petrucciani made
her question the possibility to elaborate an objective defi nition of disease;
the reason she gave was that the severity of a disease could not be assessed
by anyone except the person who had the disease.
