From: J. Hughes (jhughes@changesurfer.com)
Date: Tue Apr 22 2003 - 18:17:44 MDT
On the Rights of Those Not Yet Designed
Supertots And Frankenkids
by Erik Baard
April 23 - 29, 2003
(illustration: Glynis Sweeny)
he complete accounting of the human genome, a de facto guide for
building a person, met with predictable fanfare last week. Its
celebration marked 50 years since Francis Crick and James Watson
published their Nobel Prize-winning description of that iconic spiral
staircase, the double helix of DNA.
"After three billion years of evolution, we have before us the
instruction set that carries each of us from the one-cell egg through
adulthood to the grave," Dr. Robert Waterston, of the International
Human Genome Sequencing Consortium, told a crowd at the National
Institutes of Health.
With this new knowledge comes new power, the ability to shape our
fundamental form—and, one day, to better it. Within our lifetime,
scientists say, we will see the advent of genetically enhanced human
beings, babies who might look like all the others in the nursery but
will grow up to jump higher, learn faster, live longer. Powerful and
privileged, they could also become a vulnerable minority, as much
subject to prejudice as primed for success.
On January 3, during the final, furious effort to sequence those 3.1
billion units of DNA, a federal court in Lower Manhattan handed down a
ruling that by some bizarre twist could serve as precedent for a
third-millennium Dred Scott decision. Judge Judith Barzilay of the U.S.
Court of International Trade decreed that intelligent characters with
"extraordinary and unnatural powers," beings with "tentacles, claws,
wings, or robotic limbs," "highly exaggerated muscle tone," or
"exaggerated troll-like features," are "nonhuman creatures." Really.
That ruling, regarding a tax on comic-book toys, revealed a mindset that
doesn't bode well for the souped-up variants of human who could be
living shoulder-to-shoulder with your grandkids, or could be your
grandkids. They could very well be augmented with better genes and
robotic prosthetics or implanted chips, by choice or necessity. Will
they face an angry mob of normals when they start filling the roster at
Harvard? When they go to vote, will they be recognized as citizens? The
law has gone a lot further in banning their birth than in protecting
their rights.
Months before that court decision, Olympic officials and scientists
meeting in New York City resolved to bar genetically engineered athletes
from future competitions. And preferring phrasing that sounds
protective, the Council of Europe stated as far back as 1982 that "Human
Rights imply the right to inherit a genetic pattern which has not been
artificially changed."
Watson, founding director of the National Center for Human Genome
Research, isn't part of that consensus. "It's strange to say we've come
to a point where we don't want to improve things," he told the Voice.
"It's against the main thrust of civilization's work."
Before we swallow an overweening sense of preciousness about the human
being, we should be mindful that our Constitution never defined what one
was. Rather than narrowing our sense of perfection to Leonardo da
Vinci's precisely proportioned Vitruvian Man, we might define ourselves,
for ourselves, according to values and qualities like intelligence,
empathy, compassion—regardless of outward form or inner tinkering.
The grand-père terrible of genetic research, Watson argues that "nature
knows best" is a delusional quagmire. Evolution, after all, is a messy
set of continual compromises designed to make do for the moment. There's
the wondrous human hand and the horrible human knee. In his new book,
DNA: The Secret of Life, Watson advocates genetic modification not just
to protect us from disease, but to make us smarter, too.
Other scientists foresee new, superior offshoots of our species spawned
by genetic blending with various flora and fauna. Leading lights in
these fields gathered at Boston University this month to sort it all out
in a symposium called simply "The Future of Human Nature."
"Enough," says environmentalist author Bill McKibben in his new book of
that name, a jeremiad against such supposed technological sins. But
should SEE BAARD PAGE 36
fine-tuned babies and transgenic beings pop up among us anyway, he says,
"I am certain the better angels of our nature will prevail and we will
treat them as we would anybody else."
His assessment, that we can hate the sin but love the product of it,
seems glib given our planet's track record of prejudice. Even children
of U.S. soldiers and Vietnamese women, so-called Amerasians, faced
severe discrimination in the land of their birth because the
circumstances of their conception carried a stigma of colonialism. And
the organic farming movement has denounced genetically modified
"Frankenfoods." How much of a stretch is it to imagine that metaphor
coming full circle, stigmatizing people enhanced by those same
technologies?
The transgenic revolution is already here—fish genes have been spliced
into tomatoes to make them frost resistant, and jellyfish genes have
been used to make a fluorescent rabbit. Now imagine if the problem of
world hunger were eased by creating an even hybrid of human and plant,
people who could feed off sunshine. We'd all benefit from the reduced
demand for food, but "would those individuals be protected by the
Constitution?" asks Lori Andrews, director of the Institute for Science,
Law, and Technology at the Chicago-Kent College of Law and author of
Future Perfect: Confronting Decisions About Genetics.
"These issues are already on the table. We're going to have to expand
the definition of man," she says. The pithiest conclusion to the dilemma
she cites came from an exchange between her students: "If it walks like
a man, quacks like a man, and photosynthesizes like a man, then it's a
man."
It may sound like science fiction, but biotech's progress continues to
defy prediction. The HIV genome took years to sequence; SARS was done in
weeks. Human genetic enhancement is drawing closer—we've already
identified more than a thousand genetic markers for outcomes like Down's
syndrome.
The day is approaching when wealthy parents can pay to have markers
tweaked or added to bolster qualities like intelligence and athleticism.
But the rights of such unusual progeny are being curtailed before the
people even exist. The situation is one the X-Men, conceived as a
comic-book response to the civil rights movement in 1963 and returning
to movie theaters on May 2 with a plot centered on a repressive Mutant
Registration Act, could easily appreciate. "Born with strange powers,
the mutants known as the X-Men use their awesome abilities to protect a
world that hates and fears them!" reads their Marvel Comics tagline. In
the end, the X-Men were sold out by that very company. It was Marvel
subsidiary Toy Biz that persuaded Judge Barzilay of the heroes' "other
than human" status so it could reap reimbursements on taxes paid to
import action figures from China—the levy was higher on dolls, which
depict humans, than on other toys.
That might seem a trivial and unlikely basis for the question of what
makes us human, but as Andrews notes, "Science looks forward, law looks
backward. Computer cases rest on what happened with books, and space
shuttle cases will look back to what was decided for horses and
buggies."
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The personal decisions that would accompany genetic enhancement are
frightening. How would you feel about your first child when the second
one comes bundled with upgrades? Could the younger sibling ever enjoy a
sense of real achievement, or would the kid forever wonder if that
three-minute mile had been written in before birth? "I suppose if I were
the only one enhanced, I'd feel a bit of a cheat," Watson admits. Where
do you draw the line between risks and rewards? Changing the germ
line—those genes that will be passed onto future generations—must be
done ahead of the fetus's development, and so carries tremendous
potential for cascades of disaster. Somatic therapies—delivering genes
to a living person—have loosed cancers in test subjects.
Even in best-case scenarios, the questions are endless. Will genetically
enhanced people be held back by society, just as gifted students are now
woefully underserved? Should you have to pay insurance premiums inflated
by others whose parents lacked the foresight to eliminate disease genes?
How much privacy protection should such people have? Pity the
presidential candidate who must reveal that she's been enhanced by a lab
instead of a blue-blood pedigree.
Why should the DNA-boosted have to follow our usual strictures at all?
"The minimum time you must invest to do a Ph.D. these days is something
like three years," says Princeton philosopher Peter Singer. "But why
force someone to do it in three years when it can be done in three
months?" Need a person with faster reaction times be stuck driving 55
miles per hour?
Social pressure may end up curbing wild-eyed genetic hubris, says
Princeton molecular biology professor Lee Silver. "Parents want kids
like themselves, except maybe a little smarter," he says. "Not beyond
the curve, but on the leading edge of the curve. I think this is all
going to happen very slowly, step by step. That's much more insidious,
of course."
The means to achieve GM babies are spreading, and if the practice ever
catches on, it'll be because parents are trying to keep up with the
Joneses.
Douglas Osheroff, a Nobelist for physics, opposes genetic enhancement on
principle. Instead of molecular manipulation, he favors providing a
stimulating environment, which as a Stanford professor, he could provide
in spades. But even he concedes, "If it appeared that [my children]
would not be competitive unless they were engineered, I suppose I would
seriously consider this process."
So once created, what kind of reception would those kids get? Most
visions of genetic engineering—Gattaca, Brave New World—focus on the
danger of having a genetic über-class. These dystopian renderings
overlook one crucial fact: Time and again, mob rule has eliminated
elites, real or perceived. "This could be another way privilege is
concentrated and the underclass will be angry," Watson says. "The
underclass has always been angry, sometimes with good reason."
The raw meritocracy of the Olympics will segregate against GM humans,
even an athlete with a single GM grandparent, according to World
Anti-Doping Agency president Dick Pound. "They can go and compete with
people who've had genetic enhancements," he says. But the Olympics have
always been a proving ground for genetics. Jesse Owens demolished Nazi
claims of a superior race in the Berlin games of 1936. And as Silver
notes, bicyclist Lance Armstrong has a heart 33 percent larger than
average. "That's not just training," the biologist says. "That's
genetics."
Pound freely acknowledges that these people didn't earn their genes any
more than would a person whose parents had them tweaked in a lab. "No
matter what you do with a five-one Indonesian or Malaysian, you're never
going to make him a star NBA player. You're also not going to turn a
seven-two basketball player into a great badminton player," he says.
"Just like athletes from developing nations with poor nutrition, those
were the cards they were dealt by chance. I don't look to sport to
resolve all of the inequities of the world."
Those sitting at the highest echelons of intellectual life say they'll
be more welcoming. Osheroff judged the most recent round of what's
widely regarded as the junior Nobels, the Intel Science Talent Search.
"I believe that mental power is far more important than athletic talent
to humanity, and don't think that we would be likely to exclude
genetically engineered humans from such competitions as the STS," he
says, adding that he'd put his money where his mouth is. "As far as my
not getting a Nobel Prize because an engineered human won one, I think
the issue is who has done work which is more deserving. The prizes
should be considered as drawing attention to major advances in science,
not something that confers instant genius on the recipients."
But in the shorthand of our culture, getting into Harvard does. "There's
no dearth of quality, of brain power. Kids with 1600 SATs are a dime a
dozen now, thanks to prolonged coaching since eighth grade or seventh
grade," says Dwight Miller, senior admissions officer at the university.
The school looks for other intangibles to round out its classes, a
practice that could thwart a genetic pecking order. "There are plenty of
arrogant people here already. We don't try to compound it. All of this
is diametrically opposed to genetic engineering."
Yet Harvard wouldn't limit the number of GM students it accepted. "I
don't think it's written into the Constitution that one is guaranteed
the right to attend the college of one's choice. The last thing you're
ever going to hear Harvard say is there are quotas," Miller says.
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The trade-offs and ethical conundrums are enough to tie an anti-quota
Republican parent like Steve Sanford in knots. He's a successful
commercial artist and credits genetics for much of his ability, tracing
his lineage through talented artists and draftsmen directly back to
George Washington's portrait painter, Charles Willson Peale. His
daughter, Emily, recently won admission to two prestigious New York City
institutions, Stuyvesant High School and the LaGuardia High School of
Music and Art and Performing Arts. But what if she couldn't get into
Harvard because its ranks were filling with the offspring of parents who
could afford million-dollar enhancements?
"I'd say that's definitely not fair—it's like being able to buy your way
out of conscription in the Civil War," her father says. "There could be
riots, I think. Things could get out of control."
Then again, if he were having a new child in an era when designer babies
were common, he'd opt for enhancement if he knew it was safe and a
competitive necessity. But for the same reasons he wouldn't want her to
have bat wings genetically grafted on, he wouldn't want her to be so
intelligent as to be "a freak, someone who can't socially relate to
other people. Being smart has its own rewards, but if you go too far the
kid will probably be lonely and maybe ostracized."
Sanford intuitively locks onto Lee Silver's powerful brake—that need to
connect.
Society has always been cruel to the unusually gifted. When asked what
enhancement she'd give a child, Mensa's American president doesn't
answer intelligence or immunity to cancer. "Sure, I'd want my child to
have at least an average IQ, but if I had the opportunity to pick one
thing to enhance for a child I would probably pick physical
attractiveness," Jean Becker says. "It opens doors to you. People like
physically attractive people. It's one thing that has been linked to
higher wages and an easier emotional life, and I don't know of any
research like that in terms of intelligence. I'm sorry to say that and
ashamed that in our culture it's true."
And maybe that'll be the end to which the free market drives biotech:
the quest for classic beauty under a microscope instead of a knife. Hey,
at least it would spare a few slots at Harvard.
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