Biomedical Engineering Reference
In-Depth Information
Andrew described how he and his colleagues pushed couples in a certain
direction, but it is also interesting to note that some interviewees (Andrew
included) described situations in which
they
felt pushed by couples to offer
PGD for conditions for which they did not want to offer it. Interviewees also
told stories and described situations in which they wondered if other patient
groups did not push couples in a certain direction (and to an undesirable
extent). Again, these narratives focused on circumstances of the clinical
encounter that made things complicated. What took place in the clinical
encounter was not what interviewees wanted to take place. Furthermore,
these narratives highlighted the socio-cultural context in which the choice
to try PGD as well as the use of PGD took place. As one example, this was
the case when Andrew described support networks for couples at risk of a
certain genetic disease, where groups of people who wanted to use PGD
were described as questioning those who did not. In this refl ection, Andrew
related the issue of choice to guilt. He framed it as a question, addressed
by those who did want to use PGD. If those who do not want to use PGD
have children, he said, some of these children will be affected and die. How
do those who use PGD view these couples? Do they blame them for having
chosen to give birth to these children?
I wonder how couples who have only had unaffected children because
they've terminated the affected or only have unaffected children because
they've had a successful PGD view those families. I suspect they probably
think that those couples have no right to have an affected child.
Here, certain couples at risk for genetic diseases, who had or wanted to
use PGD, were ascribed the role of those who questioned couples who did
not want to use PGD, but Andrew also refl ected on his own view and his own
understanding of who should use PGD. In his words, 'It's very insidious, I
even fi nd myself thinking now “they don't have a right to have that”, but of
course, they have a right to have an affected child'.
As another example of stories of actual, complicating circumstances, a
few interviewees described the situation in which to decide whether to use
PGD as so complex and so fi lled with morally delicate questions, that they
wondered if it was desirable to keep to the ideal of non-advice discussions in
the genetic counselling. Again, an excerpt from the interview with Andrew
will be presented. Andrew exemplifi ed his reasoning with a story of a couple
that he had encountered:
I remember one couple very clearly. They said, you know, they never
wanted to know about this kind of thing, but it's not choice, there's not
a choice […] Couples come to see me who might have no educational
background, you know, he might be a window cleaner and she might be
a housewife. Suddenly, they have to think about numbers of embryos
[…] morphology of embryos that was way beyond what they normally
