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PREDICTIVE
TESTING
(also available in
.pdf format)
The array of predictive
testing available to pregnant women has expanded exponentially
over the 35 years since ultrasound was first made available to
"high-risk" pregnant women. The most severe and fatal
disabilities were not the first objects of prenatal testing. Rather,
the availability of condition-associated tests and economic considerations
were significant influences on the development of such methods.
Currently, no bright
line guides individuals who use predictive testing to attempt
to select against any specific characteristic (disability, medical
condition, tendency or trait). Routinized predictive testing opens
the door to the termination of embryos or fetuses with a broad
range of characteristics. Variability among humans is due partly
to genetic differences, but the developmental processes that form
us, our life experiences, the environment, and chance all play
a significant role in determining who we are. The joy that comes
from the breadth of experience that such variation and diversity
provide, could become much less vibrant in a few generations if
we selectively target some characteristics for elimination. We
would be likely to see lessening of peoples acceptance of
unusual characteristics, leading to the unquestioned assumption
that certain ordinary variations should be "cured" or
prevented, including all forms of "disability," and
even gender, leading to a further devaluation of various "non-mainstream"
characteristics.
In western countries,
there is already considerable selection against inherited disabilities.
Additionally, in some countries baby boys are selected over baby
girls. The notion that disabilities or other undesired conditions
can be eliminated by means of predictive testing is based on the
faulty assumption that such conditions are usually genetic. The
majority of disabling conditions, however, are acquired during
a persons lifetime.
Sadly, the increased
demand for prenatal genetic testing is, at least partially, reflective
of society's continuing failure to support those who choose to
raise children with different abilities. Without adequate economic
and social support systems, pregnant women (and expectant fathers)
may feel pressured to forego bearing children with characteristics
that fall outside the norm.
Women should retain
authority over their childbearing decisions without being expected
to become quality control agents for the fulfillment of societal
expectations. Society can do much to provide an environment in
which women are better equipped to raise disabled children; without
social supports, a woman's freedom to bear children with certain
conditions is illusory. Pressures by the medical profession, insurance
providers or society at large for women to undergo and act on
predictive testing should be opposed. Most importantly, society
should be educated regarding the benefits of diversity and variability
among us. Fundamentally, we must stop equating "different"
with "less worthy" or "less good."
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