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14  The Disaster of Idiocy
    The Washington Post, October 23, 1966

     The Predictability of Mongolism Imposes
       A New Burden on Our Moral Attitudes

     Of all the species on earth, man is in many ways the least well
understood as a biological object.  One of the more scandalous errors
was the one generally accepted for several decades that normal human
cells contain 24 pairs of chromosomes.  It was just ten years ago that
J. H. Tjio and A. Levan, working at Lund, Sweden, looked more
perceptively through their microscope to find that the correct number
was 23 pairs, or 46.

     Forty six or 48; what could be a more academic hairsplitting by
basic researchers?  Certainly, few biologists dared to predict how
quickly and dramatically the exact knowledge of the human chromosomes
would illuminate a major mystery of medicine, though the chromosomes
were well known to be the seat of hereditary information.

     By 1959, however, a Parisian pediatrician, J. Lejeune, showed
that in "Mongolian idiocy" -- a misnomer, as it has nothing to do
with the Mongolian peoples -- the afflicted children have 47
chromosomes.  The change from the expected 46 is usually an aftermath
of some obscure accident in the separation of chromosome pair No. 21
while the egg matures in the ovary.  This disease, now properly
called 21-trisomy disease, is one of the most severe forms of mental
retardation.

     It occurs at an over-all rate of about 1500 per million births
but very much more often in births to older mothers.  The risk rises
over 20-fold to 3 per cent or more of the births, happily fewer in
total numbers, to women 45 and over.  This was noticed by a British
geneticist, Lionel Penrose, over 30 years ago.  Since then, no
intelligent woman could avoid some rational anxiety about the outcome
of a pregnancy in her later years.

     It is frustrating to know this much about the disease yet have
no clear picture how to forfend it and even less how to remedy it
for the child.  In fact, it is not so much the child who suffers,
barring neglect, but the family and the community into which he is
born.  We simply do not know just how to deal with such parahuman
beings.  

     By nurturing the frail 21-trisomics through the crises of birth
and early infancy, medicine imposes an enormous emotional and economic
burden on a luckless family.  We do not even have an insurance system
that could help even out this burden, especially for the first four
or five years before the child might be institutionalized.

     It is also just ten years ago that several workers, in Israel,
Denmark and the United States reported that studies on the cells of
unborn infants make it possible to predict their sex.  Obtaining
these cells, by sampling the amniotic fluid, is a procedure that
took some time to certify as reasonably safe.  Its possible hazards
are probably still too poorly known to justify it for routine sex
prediction merely to satisfy parental curiosity.

     However, it has gradually been shown, mainly by American and
British researchers, that studies on the chromosomes of these cells
could also detect 21-trisomy disease perhaps as early as the 15th
week of pregnancy, a time when interruption (therapeutic abortion)
is still medically feasible.

     It is too soon to advocate the routine use of the amniotic fluid
test except for research purposes.  But it is virtually certain that
it will be available within a few years and even now we cannot evade
thinking about a responsible policy on the law of therapeutic abortion
based on this information.

     Knowledge is often uncomfortable.  Most of our moral attitudes,
and especially those about human reproduction, stem from a tradition
that was blissfully ignorant of such embarrassments as the ability
to predict a monstrous birth.  In any case, the crudeness of infant
care disposed of the least hardy of the anomalies.  For the rest,
the culture was less complex and less demanding and could find a
productive role for some poorly educable near-humans.

     In truth the occasional appearance of a parahuman organism might
help teach us something about human nature.  But our present social
system exacts too painful a charge to justify burdening a mother with
such an experiment, and certainly not against her informed wish.  If
we cannot change the system so that a trisomic birth can be a joy
to its mother, how can we humanely deny a woman the use of
scientific techniques of prediction and, beyond them, the remedy
of interrupting a pregnancy whose culmination would be a major
personal disaster?

     This policy must still be construed as an expedient while we
continue our research on fundamental aspects of human development.
Then at an even higher level we will see the use of science to human
advantage -- no doubt with further perplexities of moral decision
to take the place of our present ones.

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