By Daniel Allott on
10.24.12 @ 6:08AM at the American Spectator
The dystopian sci-fi thriller is fast
becoming our reality.
In a key scene in the film Gattaca, a
genetic counselor speaks with a young couple about the child they'd like to
have. The couple's first child, Vincent, was diagnosed immediately after birth
with several disabilities including a heart defect that puts his life
expectancy at just 30.2 years.
So the couple decide to genetically engineer their
second child. The counselor explains that after screening hundreds of embryos
produced via in vitro fertilization, they are left with two healthy boy embryos
and two healthy girl embryos. "All that remains is to select the most
compatible candidate," he tells them.
They decide they want another boy, a playmate for
Vincent. Reading off a report, the counselor says, "You have specified
hazel eyes, dark hair and fair skin. (The counselor, who is black, smiles a
little as he reads the last specification.)
He continues, "I have taken the liberty of
eradicating any potentially prejudicial conditions: premature baldness, myopia,
alcoholism, addictive susceptibility, propensity for violence, obesity,
etc."
The mother interjects, "We didn't want…I mean,
diseases, yes, but….
Her husband says, "Right, we were just
wondering if it's good just to leave a few things to chance."
The geneticist says, "You want to give your
child the best possible start."
Believe me we have enough imperfection built in
already. Your child doesn't need any additional burdens. Keep in mind this
child is still you, only the best of you. You could conceive a thousand times
and never get such a result.
The couple acquiesces, and their second son, Anton,
is the near genetically perfect son they had hoped for -- their
one-in-a-thousand baby.
In Gattaca's world, most parents
genetically engineer their children, and the few parents who conceive naturally
risk producing children who become members of an underclass called
"invalids."
Set in the "not too distant future," Gattaca,
which starred Ethan Hawke, Uma Thurman, and Jude Law, debuted on October 24,
1997. The dystopian sci-fi thriller is a cautionary tale of what could happen
if humanity doesn't check its eugenic impulses.
Fifteen years after the film's release, advances in
reproductive and genetic medicine are producing the type of society Gattaca warned
against.
The fields of assisted reproduction and genetics
have been transformed since 1997. The Human Genome Project was completed in
2003, which enhanced our understanding of the genetic roots of human traits.
It took ten years and more than $3 billion to
sequence the first human genome (DNA). But some scientists believe it won't be long before a person's full
genetic make-up could be decoded in hours and for less than $1,000.
Even now couples can discern a great deal about
their children before they are born. Genetic testing is being mainstreamed into
the practice of obstetrics. In 2007, the American College of Obstetricians and
Gynecologists began recommending that all women be offered prenatal
screening for genetic conditions.
Many doctors encourage pregnant women to obtain
prenatal genetic screening, and, if the test comes back positive for a genetic
condition, to abort. A recent survey found that a quarter of physicians admitted trying to
influence mothers' decisions, usually encouraging them to end the life of a
genetically disadvantaged child.
New DNA testing can screen fetuses for hundreds of genetic
traits in the first trimester of pregnancy. Such tests are becoming cheaper,
less invasive and more widely available. One test uses tiny amounts of free-floating DNA in the
mother's blood stream that can give researchers a baby's an entire genetic
code.
In June researchers at the University of
Washington announced a new technique that can map a fetus's DNA
and thus make it easier to prenatally alter the genetic makeup of a developing
child. Researchers say such a procedure may be available in clinics in as
little as five years.
Pre-implantation genetic diagnosis (PGD) continues
to grow in popularity. PGD allows parents to create designer babies. First,
embryos are created via IVF; then, after a few days of growth in a lab, the
embryos are screened, and those that are determined to have higher risk of
having certain traits, including genetic disabilities or the "wrong"
sex, are killed. (PGD is a favorite among Indian and Chinese nationals, who
travel to the U.S. for the procedure because their own countries outlaw the
practice.) Embryos who pass the screening process are transferred to the
mother's womb to continue developing.
A 2006 study by John Hopkins University found that
42 percent of fertility clinics offered PGD for sex selection. Dr. Jeffrey
Steinberg of The Fertility Institutes uses PGD and has suggested that he will
be able to screen embryos for eye and hair color within a few years.
Some experts believe this new technology is changing
parents' attitudes toward their children. President Bush's Council on Bioethics
warned in 2003, "The attitude of parents toward their child may be quietly
shifting from unconditional acceptance to critical scrutiny: the very first act
of parenting now becomes not the unreserved welcoming of an arriving child, but
the judging of his or her fitness, while still an embryo, to become their
child, all by the standards of contemporary genetic screening."
A 2009 poll reported in
the Journal of Genetic Counseling found that a majority of
respondents would elect to have prenatal genetic testing for mental retardation
(75 percent) and deafness (54 percent). Thirteen percent even said they'd
desire testing for superior intelligence. The authors concluded: "Our
study suggests that consumers desire more reproductive genetic testing than
what is currently offered; however, their selection of tests suggests
self-imposed limits on testing."
In an interview, Arthur Caplan, head of the Division
of Bioethics at New York University Langone Medical Center, predicted that
within a decade, prenatal genetic screening will be available not only for
physical and mental traits but also for behavioral conditions such as
schizophrenia, depression, proneness to addiction, and even sexual orientation.
"We may all think that parents and society are
very interested in diseases," he told me, "but I'm here to say that
they're also very interested in personality and behavior."
Many parents feel they have a right to genetically
perfect children, and courts are increasingly willing to recognize that right.
At least 28 states recognize "wrongful birth" lawsuits, in which parents
of disabled children are granted compensation when doctors fail to inform them
that their unborn child may be at higher risk of a genetic disorder.
Caplan believes American culture reinforces parents'
desire for genetic perfection. He said:
There's going to be demand in a society oriented
toward doing well, toward perfection, toward the value of the best you can be,
even a society that says, "I want a better life for my child than I had
for myself." That's an ethical principle that you can hear in every
religion, you can hear it in secular society -- it's just around. So somebody's
going to say "Why won't I test my kids, to [give] them a better life than
I had?
Given all these changes, how long will it be before
mothers feel obligated either to abort "imperfect" babies or to
manipulate the genes of their embryo-children?
How long until those who do not get tested will be
regarded as immoral? As Robert Edwards -- test tube baby pioneer and Nobel
Prize winner -- has said, "Soon it will be a sin for parents to have a
child that carries the heavy burden of genetic disease."
Caplan explained where this view might lead:
Down the road, disability is likely to have more
stigma, because people will ask this question: "Why did you choose to have
a kid with a disability if you could have tested and avoided that? It's your
fault." At some point the government might come along and say "It's
so expensive to have disability, here's our policy: You can't make a baby
unless you have genetic testing. That is to say, we think it's a cost
containment feature in the year 2030 for everyone to have genetic
testing."
If you don't think that's going to happen here,
start looking at what genetic testing looks like in Singapore, start thinking
about what genetic testing looks like in China. Start thinking about cultures
where people are saying, "Hey, we'd like to build better babies. It'll
make us more competitive. We've had a one-baby rule. Now we're going to have a
mandatory genetic testing rule."
Philosopher Jeremy Rifkin predicts the formation of
an "informal genetic caste system," which harkens to Gattaca, a world
where "a minute drop of blood determines where you can work, who you
should marry, what you're capable of achieving." Indeed as an
"invalid," Vincent must work as a janitor and can only fantasize
about becoming an astronaut.
Some bioethicists make the moral case for genetic
enhancements. Ethicists like Peter Singer have called for government subsidies
to parents to "genetically improve their offspring." In his 2010 book Enhancing
Evolution: The Ethical Case for Making Better People, John Harris argues
that genetic enhancement is not only morally defensible but morally obligatory.
Bioethicist Julian Savulescu agrees and has
developed a philosophy called "procreative beneficence." He argues
that "Parents should use technology to manipulate their children's memory,
temperament, patience, empathy, sense of humor, optimism and other
characteristics in order to give them the best opportunity of the best
life."
The use of genetic technology raises many questions.
Most of us are troubled by the idea of "playing God." Many people
believe that children are gifts to be appreciated as they come to us, not as
instruments of our ambition or as objects to be manufactured and commoditized.
A fundamental misconception at the root of the Gattaca mindset
is that persons with disabilities inevitably lead unhappy lives and overburden
their families and society.
But that's demonstrably untrue. To take just one
example, a 2011 survey found that 99 percent of adults with Down
syndrome report being happy with their lives. Another study found that 79
percent of parents of people with Down syndrome reported their outlook on life
was more positive because of their child. Also, 97 percent of siblings of
people with DS expressed feelings of pride and 88 percent were convinced they
were better people because of their sibling with DS.
In Gattaca, Vincent assumes the identity
of Jerome, a former swimming star with a near perfect genetic profile who was
injured in a car accident that left him paralyzed from the waist down. Vincent
pays Jerome for his identity, using his valid DNA in blood, hair, tissue, and
urine samples to pass the constant screenings as he attempts to become an
astronaut (which he ultimately does).
But Jerome feels marginalized in a society obsessed
with perfection. He becomes an alcoholic and ends up killing himself by
climbing inside his home incinerator and lighting a fire.
The eugenic mentality behind Gattaca fails
to appreciate the value of human difference. Gattaca tries to
eradicate human weakness but can't because weakness and disability are natural
and essential parts of the human experience. They are part of what it means to
be human.
Whenever I re-watch Gattaca, and as I
observe the quickly developing culture of genetic perfection around me, I think
about questions posed by Melinda Tankard Reist in her book Defiant
Birth. Her simple questions get to the heart of what's wrong with
the Gattaca mentality.
She asks: "Who is disabled? The person who
through no fault of his own lives a more difficult life? Or is it the society
which cannot tolerate or accept this person among them?"
About the Author
Daniel Allott is
senior writer at American Values, a Washington, D.C. area public policy
organization.
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