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There are
many options available to deal with genetic risk: for example
accepting the risk and having children; deciding not to have children;
undergoing prenatal diagnosis and selective abortion; or sperm
or egg donation from sources which are unlikely to carry the gene.
The option
of therapeutic abortion is particularly difficult, since for some
people, deeply held religious or moral values exclude this as
a possible choice under any circumstances.
For those
who do find it acceptable, it is important to recognize that prevention
of a handicapping condition by this means in no way lessens the
care and respect that is due to individuals who are born with
the same condition; many families realize this. For example, families
who have a child with Down syndrome, who is as loved and accepted
as any other family member, may still request prenatal diagnosis
in a later pregnancy. An additional important point is that agreement
in advance to undergo therapeutic abortion in the event of an
abnormality should never be a condition of offering prenatal diagnosis.
It should be obvious that such complex and important decisions
cannot be made by anyone other than those who will have to live
out the rest of their lives with the consequences.
Although
levels of risk are easily expressed in hard mathematical terms,
what such numbers mean for the individual is highly variable,
subjective, and depends upon their situation. Probabilities that
are not 0 or 100% cannot predict certainty.
Few
people are aware that there is at least a 3% risk for significant
birth defects or genetic disorders in the general population.
Even if they were aware, it would probably not make much difference
to their decisions to have or not have children, since there is
little one can do at present to reduce that risk. On the other
hand a 3% chance of dying following a surgical procedure would
probably seem quite high, and one might ask if the operation was
really necessary, and what the alternatives were. Individuals
differ in their attitudes to risk; some are naturally conservative,
and would like to limit as many risks in their lives to as close
to zero as possible. Others are prepared to accept, or even actively
take, risks if the possible benefits seem to be enough to justify
them. Such decisions are especially difficult when the risk is
a genetic one, with potential future lifetime consequences not
only for them, but for another person - their child. Sometimes
a parent's previous experience with the disease causes it to be
seen as a greater burden than when neither parent has had prior
experience.
Rick
Weiss
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