Gene
Ethics
APn 23.09.98 06:10
Copyright 1998 The Associated Press. All rights reserved.
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distributed without the prior written authority of the Associated Press.
By LAURAN NEERGAARD
AP Medical Writer
WASHINGTON (AP) -- A genetics pioneer wants to try gene therapy on fetuses in hopes of
curing them of deadly diseases before they're ever born. But first he's asking scientists
and ethicists to debate the experiment -- because it could for the first time alter a
person's genes in a way that the changes are passed on to future generations.
"We're talking about something that is a radical departure from anything that's ever
happened before in medicine," said Dr. W. French Anderson, who performed the first
gene therapy in 1990 and now hopes to try it on fetuses. "This is something with
profound ethical implications."
A federal panel of genetics experts begins reviewing Anderson's research plans this week.
He's still two to three years away from the first experiment on human fetuses. But
Anderson requested the unusual early review to force a national debate on whether
society's ready.
The debate likely will be hot.
"Society needs to face these problems," said Abbey Meyers of the National
Organization for Rare Disorders, who praises Anderson for tackling the issue. "No one
has talked about it -- what are the long-term implications of changing genes unalterably
for future generations?"
Anderson wants to inject a healthy gene directly into fetuses during the second trimester
of pregnancy to try curing two rare diseases: ADA, which renders the body unable to fight
even mild infections and is best known as the "bubble-boy disease"; and alpha
thalassemia, a type of anemia that in severe cases kills the baby inside the womb. Both
diseases are caused by flaws in a single gene.
Anderson, now with the University of Southern California, in 1990 used gene therapy on two
girls with ADA. It did not cure them but did improve their condition, and today, with
additional drug therapy, they're healthy.
Anderson says gene therapy should work better in fetuses because the healthy genes can
slip into more of the tiny patients' cells than they can after birth.
But there are some risks, Anderson said. The new gene could accidentally get into the
fetus' reproductive cells, the so-called germline, meaning the genetic alteration would be
passed on to that person's future children. That's never happened with gene therapy before
-- all genetic changes have affected only the person being operated on.
If the experiment works and the new gene prevents disease, then being passed to future
generations would be good for that particular family, Anderson said. But "you open up
the whole field of genetic engineering of future generations," he said.
In addition, if somehow the gene messes up, his patients' descendants could face even more
risk.
Or the gene therapy could work only partially, meaning a fetus with alpha thalassemia that
would otherwise have died in the womb instead could survive a few sickly years before
dying, Anderson said.
There are two main ethical camps, said bioethicist Ruth Macklin of New York's Albert
Einstein College of Medicine, who is on the National Institutes of Health committee that
will debate Anderson's plans Thursday and Friday.
Some people are unalterably opposed to germline alterations, arguing they mess with Mother
Nature. "So is absolutely everything else that biomedicine does," Macklin notes.
The most powerful argument is that if the experiment goes wrong, "is one going to do
more harm than good not just to a single individual but on and on and on into the
future?" she said. "Even there, however, one has to sound a note of caution. If
it's possible to do something that has a bad effect, it may very well be possible to undo
that effect."
She stressed that even if Anderson does affect the germline, it's in an attempt to fight a
lethal disease, not to create "designer children."
"There is a view within the ethics community that this is a Rubicon that in principle
should be crossed when the circumstances are right," added Georgetown University
bioethicist LeRoy Walters.
Anderson's animal experiments have shown for five years that the therapy is possible, but
he hesitated to plunge into the controversy. After all, back in 1990, "I got death
threats" over the first gene therapy. "It'll happen again."
"This will be a stressful time, but nobody else is going to do it, it needs to be
done, the time is right," Anderson concluded.