ABLEnews

                        Designing Children

     In the Wonderland of Lewis Carroll's Through the Looking
Glass, Alice ate a magic mushroom and grew taller. In the
Wonderland of our nation's capital, government scientists are
experimenting on healthy children to increase their height.

     The children are healthy, that is, unless like the scientists
at the National Institutes of Health, you find "being too short a
problem for which medicine is the solution."

     One who most definitely does not is Jeremey Rifkin, of the
Foundation on Economic Trends.  The Washington watchdog has
announced its intention to sue NIH if it persists in injecting
human growth hormone (HGH) with unknown side effects into short
children throughout their teens. 

     How short is "short"?  Experimental subjects must be between 9
and 15 years of age and a least 2.5 standard deviations below the
average height for their age when they enter the study.  At age 12
and a half, for example, this means all girls under 4 feet, 6
inches and all boys below 4 feet 4.

     Half the subjects are injected with HGH.  The other half
receive a harmless placebo.  Did I say "harmless"?  Not to many
parents recruited by the experimenters (nor, as we shall see, to
the Physicians Committee for Responsible Medicine).

     Only one in five families whose children are found eligible
for the study enroll them.  Many decline because they do not want
to run the risk of their child being dumped without their knowledge
or consent, in fact, against their wishes, into the nontreated
control group.  According to Dr. Susan Rose, who designed the NIH
experiment's protocol, one in four families refusing to participate
in the study find pediatricians willing to prescribe HGH, whose
only approved uses in the United States involve the treatment of
genetic disorders and disease. 

     With a year's treatment for each of the 20,000 children with
hormone deficiency from pituitary damage or unknown cause costing
up to $20,000, the annual sales of HGH's manufacturers, Genetech,
Inc. and Eli Lilly and Co., exceed $200 million.  This would be a
paltry downpayment, however, should HGH prove effective in boosting
the final height of healthy children with adequate HGH levels in
their bloodstreams who are nevertheless short.

     The government experiment's outcome is far from certain.  The
Physicians Committee for Responsible Medicine accuses NIH of
violating regulations of the United States Department of Health and
Human Services designed to protect human subjects by requiring that
experiments subjecting children to risky procedures offer them the
prospect of direct, personal benefit. 

     Previous experiments with African Pygmies found they did not
grow taller when given extra HGH.  Most experiments on healthy
children have lasted less than two years, with preliminary results
indicating HGH supplements merely shorten the time children take to
reach their adult height.  The treatments may even be harmful. 
Still 36 children presently participate in the four-year-old
experiment, with 80 targeted to do so.  The study is designed to
continue for a decade when all participating children will have had
the growth plates of their bones close, a sign of skeletal
maturity.

As David Brown, of the Washington Post, reports:

     The HGH experiment debate had focused in one place some
     of modern medicine's thorniest issues: What constitutes
     a "disease" and a "successful" treatment; which experiments
     involving children are permissible; how much attention
     should scientists pay to consumer and commercial
     pressures for research...

     These questions are likely to come up again in other    
     contexts as medicine and biology gain the ability to    
     manipulate physical, and possibly mental, traits that are
     not obviously linked to disease.

     "This is the big fear that we've always had about genetic
engineering-- that it would be used for social purposes and not
medical purposes," warns Rifkin, who has sounded the alarm on
recombinant DNA technology for more than a decade.  "What about fat
people?  What about people with different skin pigmentation?  [Like
the African Pygmies?]  What about young girls whose breasts won't
grow to the size that society desires?  [Who may subject themselves
to dangerous silicone breast implants?]  This experiment moves us
on a very, very dangerous journey that starts with 'enhancement' and
ends up with eugenics."

     Short children "underrate themselves, and people around them
expect less of them, because they look younger than their age. They
grow up working below their capacity," Rose charges.  Arthur
Levine, scientific director of the National Institute of Child
Health and Human Development, which runs the NIH experiment, adds,
"In our society, height is generally seen as a positive
characteristic, and extremely short stature is seen as negative
characteristic.  If a child becomes so disabled by anxiety and
worry about his short stature it becomes tantamount to a disease."

     For Rifkin, and for CURE, the real disease--bigotry lies
elsewhere.  "There is nothing wrong with these children.  What is
wrong is society, the biases, the discrimination.  But don't
address the diseases of society by changing the physiology of the
individual."

     Let's make our hearts so big that we love every child no
matter how small his or her size!

...For further information, contact CURE, 812 Stephen Street, Berkeley
Springs, West Virginia 254511 (304-258-LIFE/5433).

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