[Paleopsych] MSNBC: Would you have allowed Bill Gates to be born?
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Thu Jun 2 15:25:05 UTC 2005
Would you have allowed Bill Gates to be born?
http://www.msnbc.msn.com/id/7899821/
Advances in prenatal genetic testing pose tough questions
By Arthur Caplan, Ph.D.
MSNBC contributor
Updated: 12:33 p.m. ET May 31, 2005
Who needs Bill Gates? No, I dont mean who needs a gazillionaire corporate
titan, a man whose company, Microsoft, took in billions of dollars last year by
controlling nearly all the software used to run nearly every computer on the
planet.
No, I mean, literally, who needs him? If you could go back in time and stop
the birth of the worlds most famous nerd, would you?
You probably answered my question with a "no." Whatever Gates sins may be, he
is the father of a computer revolution that has brought much good to many
people throughout the world. Add to that achievement his current generous
philanthropic activities supporting some very worthy causes, such as vaccine
research and a center for autism research in Seattle, and the case for having
Bill with us becomes pretty persuasive.
But what if I told you its possible that Gates has a medical condition that
accounts, in part, for both his tremendous achievements and for his
"nerdiness?" Gates is widely reported to display many personality traits
characteristic of a condition known as Aspergers syndrome. Aspergers is a
mild version of autism, a more serious condition that renders many children
unable to talk, be touched, communicate or socialize. While I certainly do not
know if Gates has Aspergers, his difficulties in social settings are nearly as
legendary as his genius, so it's possible.
The perils of genetic testing
That said, if you had been Gates' potential mom or dad 50 years ago, what would
you have done if you knew about his abilities and flaws before he was born?
Would you have wanted a child that would go on to do great things but would
have a hyper-nerdy personality? What if the decision about whether to have a
child like him also carried a risk that he might be born with far more serious
disabilities? Would you have decided to carry the baby to term?
The reason I ask these questions is that there is a good chance we will soon
have a genetic test for detecting the risk of autism in an embryo or fetus. The
development of such a screening tool raises the possibility that parents might
one day have the option of preventing the birth of a child with even a mild
case of the disorder.
The thought is very upsetting to many in the autism community, including Aspies
For Freedom, an advocacy group for people with Asperger's that is pushing to
make June 18 "Autistic Pride Day." In their view, those with autism are no more
suffering from a disease than are people who are short or have lighter or
darker shades of skin. They want autism treated as merely a difference not a
disease. And they are aghast at the thought that anyone would abort a child
because they might have any degree of autism.
An advantageous disorder?
In the past decade, there has been an explosion in the number of U.S. children
diagnosed with autism. Less well known is that there has been a parallel autism
epidemic in other countries, such as Ireland and Britain. Whatever the reasons
for the increase in the number of cases, it is highly likely that autism has a
genetic component. Scientists and doctors have not yet nailed down what the
genetic contribution to autism is, but the fact that males are far more likely
to be affected than females and that autism appears in certain ethnic groups
more than others are strong indicators.
Like many genetic diseases, there is a broad range of severity associated with
autism. And like some genetic diseases, such as sickle cell trait, there can
be, in the right environment, an advantage to having a mild form.
Aspergers is the least disabling form of autism and research is beginning to
show that it may also account for the presence of some special capabilities in
areas like mathematics, computer science and engineering. But the same genes
may also create a person who is socially awkward, easily distracted, very
introspective and in many ways withdrawn and solitary.
Gates was born on Oct. 28, 1955. When he arrived in the world the science of
human genetics was truly in its infancy. Newborn babies were only tested for a
few rare genetic conditions. Fifty years later, the field of human genetics is
thriving. Tests have been established for detecting Tay-Sachs disease,
Huntingtons disease, some forms of breast cancer and Alzheimers disease, and
hundreds of other fatal or disabling conditions.
The drive for more genetic tests continues unabated. Undoubtedly the genes for
autism and Aspergers will soon be found. When they are, my question would
you have stopped Bill Gates from existing? will take on a very real meaning.
Fewer geniuses?
There are many in the autism and Aspergers community, like the newly formed
Aspies for Freedom, who worry that the minute a genetic test appears, it will
spell the end for a lot of future geniuses, like Gates. Maybe there will be
fewer Thomas Jeffersons or Lewis Carrolls remarkable thinkers who also fit
the profile for Aspergers.
As genetic testing moves into the world of mental health, we are going to face
some very tough questions. Will medicine suggest that any and every variation
from absolute normalcy is pathological? How can we draw lines between disabling
diseases such as severe autism and more mild differences such as Aspergers,
which may give society some of its greatest achievers? Will parents have
complete say over the kind of children they want to bear? And what sorts of
messages will doctors and genetic counselors convey when talking about risks,
probabilities and choices that involve not life and death but personality and
sociability, genius and geekiness?
All I can tell you is that neither medicine nor the general public are at all
ready to deal with the emerging genetic knowledge about autism, Aspergers or
other aspects of mental health. But the future of our society may well hinge on
how we answer these questions.
Arthur Caplan is director of the Center for Bioethics at the University of
Pennsylvania.
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