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?"
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