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?”
