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The public understanding
of what genetic counseling involves is sometimes inaccurate, even
to the extent that some people are reluctant to attend such counseling.
However unjustified, feelings of guilt or shame are common in
families that have been afflicted with birth defects or genetic
disease. Many people at first expect that they will be told whether
or not the counselor thinks they should have children, and where
to apportion "blame".
In fact, as was shown
in an international survey of geneticist's attitudes, the truth
is quite the reverse.
The ethical
principle of autonomy has become paramount in genetic counseling,
to
an extent probably not equaled in medicine. Counseling is non-directive
and nonjudgmental: it does not tell people what they should do,
nor make value judgments about their choices. The objective of
genetic counseling is to fully educate individuals (or couples)
about the nature and extent of the genetic risks they face, together
with the possible options open to them. But the final informed
choice must be made solely by the individual, without any "recommendation"
by the counselor. It is fairly obvious why this must be so. Reproduction
is one of the most personal and spiritual human activities. A
conscious decision to have children rests on many subjective factors
including the relationship of the partners, their individual and
combined desire for children, and their economic and social well-being.
Only the individuals concerned can weigh these against the possible
genetic risks. There is never any "right" answer, only what seems
right for each individual. The code of ethics of the Canadian
College of Medical Geneticists states that supportive rather than
directive advice should be given to patients in regard to reproductive
decisions. However, one of the disturbing findings of the Royal
Commission was that counseling offered by physicians outside Genetics
Centers tended to be much more paternalistic and directive.
Charles
Siebert
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