Biomedical Engineering Reference
In-Depth Information
experts in the fi eld, s/he need not do so. The patient can choose to keep the
diagnosis to her- or himself. No matter if the patient discusses the situation
with others, the diagnosis is relevant to the patient's health status and not
the health status of others.
21
Even if s/he chooses to discuss what to do and
whether to undergo treatment with others, these others are not involved in
the same sense. Though the consequences of a patient's choice can be very
signifi cant for some others, such as partner and/or children, these others
will not necessarily undergo treatment themselves. If the patient chooses
to undergo surgery, the person treated for a disease is also the one who
has the disease. All of these aspects of medicine in general are either not
as straightforward or different in the new reproductive medicine. In the
latter, when IVF and PGD are used, the 'patient' is not one person, but at
least two persons who cannot or dare not conceive a child together without
technical and medical means. Neither of the so-called patients needs to have
a manifest disease, but one or both of them need to be carriers of a disease.
22
Also, if one or both of the patients have a manifest disease, and even though
the disease is the reason why they approach the hospital, their disease will
not be treated, nor necessarily will consequences of that disease be treated.
Furthermore, both patients/partners need to be involved in the discussion of
whether and to undergo treatment, and if so which.
23
In addition, the genetic
knowledge that is obtained is of relevance not only for the patients but for
also siblings and other relatives. In situations in which PGD is offered and
used, there is as yet no treatment of the disease for the future child. There
is no treatment or alleviation from disease, only selection of embryos on the
basis of genetic information.
Whereas some of these conditions are common for the prenatal diagnosis
situation as well, the choice in the PGD context has one obvious and special
feature: when the discussion of whether to use PGD takes place there is no
embryo, no pregnancy, no foetus, no child. Conception,
in vitro
, has not yet
taken place. Though choice in general and autonomous choice in traditional
medicine have their complexities, some of these complexities are sharpened
in the PGD context. Here, choices typically involve at least two persons and
these persons are engaged in the shared decision-making in a way that is
different from that which is most often found in medicine in general.
PGD is not a matter of treatment, nor is a pregnancy underway. It is
offered as a possibility to select embryos, if one so wants. This can be one
key to understand interviewees' ambivalence in how to evaluate PGD as
well as their emphasis on the value of providing choice. Whereas they could
have described PGD as positive since genetic diseases could be avoided,
disease avoidance through PGD and selective transfer of embryos (as well as
through prenatal diagnosis and abortion) has been criticised by networks for
people with genetic disease/disability. These methods, it has been held, make
women and men with a genetic disease/disability feel undesired and unequal
and this is ethically problematic (DHR 1998, 2001). Providing choice has
not
been criticised in this way.
