“With genetic engineering, we will be able to . . . improve the human race.”
Stephen Hawking
Today, genetic engineers hacking the human body in unprecedented ways claim their efforts will ultimately improve the species. But will they, really?
I’m reminded of the Twilight Zone episode, in which a team of doctors has repeatedly tried improving the looks of Janet Tyler, a young woman whose bandaged face we’re told is hideously disfigured. After giving it one last go, the surgeon, anesthetist, and nurses gather expectantly around Janet’s bed, as the bandages slowly come off.914
“All right, Miss Tyler,” the surgeon says kindly. “Now here comes the last of it. I wish you every good luck.”
A moment later, the nurses gasp.
The doctor, dropping the scissors, recoils in horror. “No change!” he exclaims. “No change at all!”
Instantly—in a classic Twilight Zone twist—we see Janet Tyler’s beautiful face and the frantic, grotesque visages of the surgeon, anesthetist, and nurses. They look like mutant pigs, large snouts and all.
Today, biohacking—the use of genetic engineering to “improve” not just our external appearance, but the entire human design—is raising some important ethical questions. What is biohacking’s ultimate vision of perfection, exactly? And who decides what constitutes imperfection?
“The best time to have these conversations about a new technology is right before it becomes plausible,” says Hank Greely, a bioethicist at Stanford. “Now is the time to talk about it.”915
Iceland illustrates perfectly the frightful ethical problems with seeking human perfection. Since the start of the millennium, nearly 100% of that nation’s women have chosen to abort fetuses prenatal testing indicates have Down syndrome, a genetic condition caused by an extra chromosome.916 Today, only about two such allegedly imperfect Icelandic children slip through the cracks and are born every year.
“We don’t look at abortion as a murder,” explains Helga Sol Olafsdottir, a counselor at Reykjavik’s Landspitali University Hospital. “We look at it as a thing that we ended. We ended a possible life that may have had a huge complication . . . preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder. . . .”917
Think what you will about abortion, Olafsdottir’s rationalization doesn’t square with the facts. In a 2011 study led by Massachusetts’ famed Children’s Hospital Boston, scientists found “nearly 99% of people with Down syndrome indicated that they were happy with their lives; 97% liked who they are; and 96% liked how they look. Nearly 99% of people with Down syndrome expressed love for their families, and 97% liked their brothers and sisters.”918
Adults with Down syndrome routinely lead productive lives, even earning college degrees, becoming artists, running companies, and winning political offices.919 Karen Gaffney, a woman with Down syndrome, swam the English Channel, escaped Alcatraz sixteen times, and delivered a rousing TED talk titled, “All Lives Matter.”920
Iceland’s disdain for supposedly imperfect persons is not anything new, as illustrated by Plato’s report in the fourth century BC about a physician named Asclepius. “But when it came to people whose bodies were permeated with disease, he did not attempt to extend their useless lives . . . and have them producing children who would probably be just like them,” Plato writes in The Republic, “since treating them did no good either for the patients themselves or for the state.”921
In 1866 that same brutal worldview got an unexpected boost from Charles Darwin’s notion that nature is constantly improving itself by selecting strong heritable traits. “As natural selection works solely by and for the good of each being,” Darwin wrote in On the Origin of Species by Means of Natural Selection, “all corporeal and mental endowments will tend to progress towards perfection.”922
The eminent English scholar Francis Galton, Darwin’s half-cousin, decided civilized societies could achieve perfection in the very same way. “[A]s it is easy . . . to obtain by careful selection a permanent breed of dogs or horses gifted with peculiar powers of running,” Galton explained in his 1869 book Hereditary Genius, “so it would be quite practicable to produce a highly-gifted race of men by judicious marriages during several consecutive generations.”923
To describe his scheme for creating the perfect society, Galton coined the term eugenics, from the Greek words for “well-born” or “good race/ stock.”924 He also began an aggressive campaign for the procreation of admirable traits—as exemplified, he said, by the British aristocracy—and against the procreation of feeble traits, which he ascribed to the indigent, promiscuous, and criminal classes.925
His eugenics campaign immediately won the endorsement of his famous cousin. “Though I see so much difficulty [actually implementing such a plan], the object seems a grand one,” Darwin wrote to Galton, “and you have pointed out the sole feasible, yet I fear utopian, plan of procedure in improving the human race.”926
Very quickly, many other intellectuals of the day hailed Galton’s plan for perfecting the human race—including George Bernard Shaw, H. G. Wells, and Bertrand Russell. “The way of nature has always been to slay the hindmost,” observed Wells. “It is in the sterilization of failures . . . that the possibility of an improvement of the human stock lies.”927
With the approach of the twentieth century, Galton’s eugenics movement soared across the Atlantic and promptly won the enthusiastic support of America’s intellectuals. They included faculty members from universities nationwide, and even Harvard University’s fabled presidents Charles Elliot and A. Lawrence Lowell.
Soon, scholarly publications were rife with pro-eugenics scientific studies maligning any and all allegedly inferior groups of humans. Typical of them was a 1906 scientific article in the American Journal of Anatomy titled, “Some Racial Peculiarities of the Negro Brain.”928
Between 1907 and 1931—the height of the American eugenics movement—thirty states passed laws to do what H. G. Wells declared was needed: force the sterilization of people considered undesirable. Many of the laws were successfully struck down in court. But in 1927— in a landmark case involving Virginia’s proposed sterilization of Carrie Buck, an unwed mother with a moron-level IQ—the US Supreme Court decided in favor of the state, eight to one.
“It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility,” wrote Supreme Court Justice Oliver Wendell Holmes Jr., “society can prevent those who are manifestly unfit from continuing their kind.” Referencing Virginia’s determination that Carrie’s mom and Carrie’s infant daughter were also feebleminded, Holmes concluded by saying, “three generations of imbeciles are enough.”929
During those heady days of eugenics, a young activist named Margaret Sanger founded the American Birth Control League—a precursor of today’s Planned Parenthood Federation of America— and the Birth Control Clinical Research Bureau (BCCRB). Situated in New York City, the BCCRB offered women information about and prescriptions for various kinds of contraceptives, including diaphragms and jelly, condoms, and the rhythm method.930
Sanger couched her activism in feminist terms, for which today’s political progressives celebrate her. Yet in 1934 Sanger authored the American Baby Code, in which she proposed giving the government enormous sway over women. “No woman shall have the legal right to bear a child . . .,” she wrote in Article 4 of the code, “without a permit for parenthood.”931
Sanger advocated such Draconian edicts because she was an unblinking eugenicist. Indeed, she was a more blunt-speaking eugenicist than even H. G. Wells, with whom she had a well-publicized affair.932
“Every . . . malformed child, every congenitally tainted human being brought into this world is of infinite importance to that poor individual; but it is of scarcely less importance to the rest of us and to all of our children who must pay in one way or another for these biological and racial mistakes,” she wrote in her 1922 best-seller The Pivot of Civilization. “We are paying for and even submitting to the dictates of an ever increasing, unceasingly spawning class of human beings who never should have been born at all . . .”933
Contrary to the assertions of her modern-day apologists, Sanger did not see eugenics and birth control as separate social campaigns. “[T]he campaign for Birth Control is not merely of eugenic value,” she wrote in The Eugenic Value of Birth Control Propaganda, “but is practically identical in ideal, with the final aims of Eugenics.”934
If there was still any doubt in anyone’s mind about Sanger’s final intentions concerning birth control, she made them perfectly clear in the book Woman and the New Race. “Birth control itself, often denounced as a violation of natural law, is nothing more or less than the facilitation of the process of weeding out the unfit, of preventing the birth of defectives or of those who will become defectives,” she said.935 “Birth control must lead ultimately to a cleaner race.”936
Outspoken, public support for the eugenics movement plummeted in the 1940s, after the Nazis took it to an extreme, by exterminating more than six million Jews, Romanies, Jehovah’s Witnesses, criminals, disabled persons, and other supposed undesirables.937
“Darwinism by itself did not produce the Holocaust,” observes historian Richard Weikart at California State University, Stanislaus, “but without Darwinism . . . neither Hitler nor his Nazi followers would have had the necessary scientific underpinnings to convince themselves and their collaborators that one of the world’s greatest atrocities was really morally praiseworthy.”938
According to Hitler’s economist and confidant Otto Wagener, the Führer drew inspiration for the unspeakable atrocity from American eugenicists. “I have studied with great interest,” Hitler reportedly said, “the laws of several American states concerning prevention of reproduction by people whose progeny, in all probability, be of no value or be injurious to the racial stock.”939
Despite this sordid history, the basic philosophy behind eugenics— that some people don’t deserve to live and should be prevented from existing—is still very much alive today, as we see in Iceland. In fact, thanks to genetic engineering, eugenics (though it is not called that) is now more popular than ever.
For Johnjoe McFadden, a molecular geneticist at the University of Surrey, the possibilities of using genetic engineering to improve the human lot are endless and exciting. “Genetic editing is like playing God,” he declares, “and what’s wrong with that?”940
Here are two prime examples of what’s in store for us. Decide for yourself how to reply to McFadden’s question.
Customized Offspring
On August 2, 2017, a medical research team led by the Oregon Health & Science University (OHSU) in Portland announced it had done something historic: it successfully biohacked dozens of human embryos plagued with a defective MYBPC3 gene that causes hypertrophic cardiomyopathy, a congenital heart condition that afflicts about one in 500 people. Using the popular gene-editing tool CRISPR-Cas9 [see FRANKENSTEIN: MEMORY LANE], the scientists snipped off the defective MYBPC3 gene and replaced it with a normal one.941
All told, the scientists hacked fifty-eight defective embryos, of which forty-two were successfully corrected—an impressive 72.4% success rate. That bests by far previous attempts at hacking human embryos by other groups in China,942 Sweden,943 and the United Kingdom.944
The scientists behind this remarkable achievement say their technique could one day let us “fix defective” human embryos, instead of aborting them. “Discarding half the embryos is morally wrong,” says Shoukhrat Mitalipov, a Kazakhstani-born biologist and the director of OHSU’s Center for Embryonic Cell and Gene Therapy. “We need to be more proactive.”945
Beyond such inevitable, utopian hype, many scientists and bioethicists are deeply worried that tinkering with the DNA of a human embryo to fix one disease could inadvertently create other genetic diseases. Such unimaginable mutant afflictions could forever infect the human gene pool.
“When you’re editing the genes of human embryos, that means you’re changing the genes of every cell in the bodies of every offspring, every future generation of that human being,” notes Marcy Darnovsky, director of the Center for Genetics and Society in Berkeley, California. “So these are permanent and probably irreversible changes that we just don’t know what they would mean.”946
There’s also a great concern embryo-hacking research will inexorably lead to a booming business in designer babies. “In a world dominated by competition, parents understandably want to give their kids every advantage,” says the eminent NYU bioethicist Arthur Caplan. “The most likely way for eugenics to enter into our lives is through the front door, as nervous parents . . . will fall over one another to be first to give Junior a better set of genes.”947
Being able to create designer babies, says Darnovsky, raises the specter of a grim future indeed. “If we’re going to be producing genetically modified babies, we are all too likely to find ourselves in a world where those babies are perceived to be biologically superior,” she warns. “And then we’re in a world of genetic haves and have-nots. That could lead to all sorts of social disasters. It’s not a world I want to live in.”948
Yet, thanks to the prospects of a new, profit-making industry, such a world is fast approaching. Today, laying the groundwork for it, commercial startups all over the world are investing hundreds of millions of dollars in CRISPR technology.949
“When we spliced the profit gene into academic culture, we created a new organism: the recombinant university,” laments the American Nobel Prize-winning biochemist Paul Berg. “The rule in academe used to be ‘publish or perish.’ Now bioscientists have an alternative: ‘patent and profit.’”950
In February 2017, twenty-two bioscientific leaders commissioned by the National Academies of Sciences, Engineering, and Medicine (NASEM) concurred with all the above-stated concerns. But it didn’t stop them from blessing further human embryo-hacking research, albeit subject to a long list of toothless caveats. “Heritable germline genome-editing trials must be approached with caution,” the NASEM report concluded, “but caution does not mean they must be prohibited.”
So much for science policing itself, says George Annas, the distinguished Boston University bioethicist. “The scientists are saying this is all a question of risk-benefit analysis, versus saying, ‘No, it’s just wrong to do,’” he says. “It’s like torture: some people think we should never do it, other people say, ‘No, no, if it works, then it’s okay.’ Designer babies is a lot like that.”951
Presently, in the United States and the European Union, there are laws limiting or outright prohibiting tampering with the DNA of human embryos.952 But let’s be honest, nothing can possibly stop renegade scientists from doing whatever they want. As Nicholas Rescher, American philosopher at the University of Pittsburgh, observes, “Any attempt to set ‘limits’ to science . . . is destined to come to grief.”953
The aforesaid team of OHSU-led, embryo-hacking scientists, for example, got around stiff US regulations by using institutional and private monies, not government funding.954 Moreover, its leader, Shoukhrat Mitalipov, is a well-known maverick.
In 2007 he cloned monkey embryos955 and in 2013 produced stem cells by cloning human embryos.956 Now, despite professing opposition to designer babies, Mitalipov is making it clear no one and nothing will keep him from his goal of producing full-term, genetically engineered human babies—even if it means relocating to a country where it is allowed. “We’ll push the boundaries,” he vows.957
And he’s not alone in jumping for joy over the possibility of creating genetically engineered human babies.
“This is exciting,” avers physiologist Sakthivel Sadayappan of the University of Cincinnati. “This is the future.”958
“The scientists are out of control,” warns bioethicist George Annas. “They want to control nature, but they can’t control themselves.”959
Customized Parents
John Zhang, founder of the New Hope Fertility Clinic in New York City, exemplifies what Annas fears most.
In 2003—when Zhang was at Sun Yat-Sen University of Medical Science in Guangzhou, China—he and some colleagues there announced the invention of novel techniques for creating what the media dubbed three-parent babies.960 The procedure was widely slammed as unethical, but Zhang’s motivation seemed reasonable: give women with defective mitochondrial DNA the chance to have healthy offspring.
Mitochondrial DNA—mtDNA—is made of the same stuff as ordinary nuclear DNA, nDNA. But whereas nDNA is linear and dwells within a cell’s nucleus, mtDNA comes in small loops and lives in tiny islands called mitochondria outside the nucleus.961
Moreover, nDNA controls our entire being, with about 20,000 to 25,000 genes [see FRANKENSTEIN: MEMORY LANE].962 By contrast, mtDNA controls only the machinery within our cells that converts food into energy, using just thirty-seven genes.963
If a woman’s eggs have normal nDNA but defective mtDNA, her offspring can inherit certain terrible diseases. A man’s mtDNA is never passed on to the next generation, because it is obliterated during the fertilization process, so it is of no concern here.964
In 2016 Zhang announced he used one of his three-parent-baby techniques on a thirty-six-year-old Jordanian woman whose defective mtDNA is known to cause Leigh Syndrome. It’s a rare fatal disorder that attacks the central nervous system, usually starting at a very young age.965
Zhang conducted the headline-making experiment in Mexico, because it is not allowed in the United States. Here’s how it worked.
Zhang collected eggs from both the Jordanian patient and a female donor. Next, he removed the nDNA from the donor eggs and replaced it with nDNA from the patient’s eggs. Finally, he fertilized the engineered eggs with sperm from the Jordanian patient’s husband. The resulting fertilized eggs, therefore, had DNA from three different people: healthy nDNA from the patient, healthy mtDNA from the female donor, and healthy nDNA from the patient’s husband.
All told, the controversial procedure netted five three-parent fertilized eggs. One of them was viable enough to be implanted in the Jordanian woman’s womb.
Nine months later, in April 2016, she gave birth to a seemingly healthy boy. It was a stunning achievement, given her defective mtDNA had hitherto caused four miscarriages and the death of two children, eight months old and six years old.966
“It’s exciting news,” says Bert Smeets, a biochemist at Maastricht University in the Netherlands.967 “This is great news and a huge deal,” agrees Dusko Ilic, a biologist at London’s King’s College. “It’s revolutionary.”968
This might have been the happy ending to John Zhang’s story. But there’s more.
In 2016 Zhang quietly started a for-profit company called Darwin Life, offering mitochondrial replacement therapy (MRT) to women forty-two to forty-seven years old for $80,000 to $120,000 a pop.969 According to a 2015 report, American women over forty-two who resort to IVF get pregnant only 3.2% of the time.970 Zhang’s MRT is based on unsubstantiated speculation that faulty mtDNA is what causes older women to have difficulties conceiving.
According to the US Securities and Exchange Commission, Zhang has raised $1 million in initial funding for Darwin Life. But he hasn’t said from whom.971
There are other worrying facts.
In 2016 Zhang and colleagues published a paper that contains this explicit disclaimer: “Declaration: The authors report no financial or commercial conflicts of interest.”972 There is no mention whatsoever of Darwin Life.
To skirt US regulations severely restricting the biohacking of human embryos, Zhang announced Darwin Life would create three-parent eggs in his New York facility but perform the actual surgery in his facility in Mexico, where “there are no rules.” Says he, “For now, our nuclear transfer technique is very much like an iPhone that’s designed in California and assembled in China.”973
Even scientists who hailed Zhang’s successful experiment with the Jordanian woman say his commercial venture is troubling because MRT technology is still way too untested. Despite Zhang’s efforts, for instance, the Jordanian baby is still infected with a few percent of his mother’s defective mtDNA.974 Scientists say it’s conceivable, as the boy matures, these defective seeds could overrun his normal mtDNA, ultimately resulting in his falling victim to the dreaded Leigh Syndrome.
Scientists are also worried about the vast uncertainties of mixing and matching DNAs from three parents. Genetic incompatibilities among them, they caution, could result in completely unforeseen complications as the child grows up.
We just don’t know.
“The number of issues that are still unresolved—it’s just staggering,” says David Clancy, an expert in mitochondrial biology at England’s Lancaster University.975
In a sternly worded letter dated August 4, 2017, the FDA reprimanded Zhang for his sketchy behavior and dubious motives with Darwin Life. “Please be advised that you are using MRT to form a genetically modified embryo, which is subject to FDA’s regulations,” the letter says. “The genetically modified embryo that you formed using MRT does not meet all the criteria . . . Nor is exportation [e.g., to Mexico] permitted . . .”976
Today, if you type in the URL www.darwinlife.com, you’re sent to a flashy website with this disclaimer:
“The information contained on this site is intended for informational purposes only. Please be advised that MRT and IVF using MRT-modified oocytes is not performed in the United States, and has not been reviewed by the U.S. Food and Drug Administration. Also . . . we cannot guarantee procedures will result in successful outcomes and healthy children. . . . and the company will not conduct any clinical work in USA [sic] for the foreseeable future.”977
In the meantime, others are speeding ahead with their own versions of MRT. In January 2017, Valery Zukin, director of the Nadiya Clinic of Reproductive Medicine in Kiev, announced his team used a technique similar to Zhang’s on an infertile woman. The result, he claims, is a healthy baby girl.978 And in March 2017, after years of heated debate, England’s Human Fertilisation and Embryology Authority gave doctors at Newcastle Fertility Centre the go-ahead to use three-parent MRT on patients with severely defective mtDNA.979
As for Zhang, the criticism from fellow scientists and his run-in with US authorities is unlikely to stop him. He is clearly a man on a mission, which goes well beyond aiding infertile older women and women with defective mtDNA. It’s a mission redolent of the passionate eugenics campaigns waged by the likes of Galton, Darwin, Wells, and Sanger.
Zhang says he is determined to continue expanding his technical repertoire, so one day parents can have perfect children. From the color of a child’s hair and eyes to their IQ and athleticism—everything will be on Darwin Life’s biohacking menu of the future.
“Everything we do is a step toward designer babies,” Zhang says candidly about his ultimate scientific and commercial goals. “With nuclear transfer and gene editing together, you can really do anything you want.”980
Jef Boeke, a geneticist at New York University and co-founder of GP-Write, is among those who don’t get why people are concerned about science reconfiguring the DNA of all living organisms. “Unless they subsist exclusively on fruits, nuts, and fish,” he says, “there is about a 100 percent chance they are enjoying the meddling done by our genetically oriented forebears who did selective breeding.”981
As I have stated elsewhere in this section, this nonchalance—this misguided belief that nothing has really changed and genetic engineering is essentially no different than selective breeding—poses a far greater danger to our future than the technology itself.
To be sure, since the dawn of life, we have significantly reshaped it, by systematically favoring certain traits and disfavoring others. But as I have attempted to explain in these chapters, genetic engineering is a completely different beast.
As mere breeders, we are like gamblers with clever systems for winning. We game the odds in our favor by betting in certain, calculated ways. But in the end, the laws of chance remain in control; they call the shots and determine our successes and failures.
As genetic engineers, however, we can now actually rig the decks of cards and wheels of fortune, to make them do exactly what we want. No longer at the mercy of chance, we now call the shots. We make DNA dance to our tune.
“I think DNA is going to be the most important material of the 21st century,” says Emily Leproust. She is the CEO of Twist Bioscience, a popular San Francisco-based manufacturer of customized DNA strands. “The last century was about computers, and now we are entering an era of biology.”982
This heady, unprecedented power will enable us to create a truly designer world. A vain reality that conforms perfectly with our egocentric needs and desires—just as we see happening in Iceland.
Icelanders have successfully created a world scrubbed of people with Down syndrome. But at what cost to their nation’s heart and soul? And, speaking of soul, is it a mere coincidence Iceland is fiercely atheistic?983 A magazine article recently boasted 0.0% of Icelanders under twenty-five believe in God.984
In 2009 Icelander Thordis Ingadottir inadvertently gave birth to Agusta, a Down syndrome child—one of only three born that year. Today, despite Iceland’s eugenics-like culture, Ingadottir has high hopes for her daughter’s happiness. “I will hope that she will be fully integrated on her own terms in this society,” she says. “That’s my dream.”985
But, honestly, how can Agusta ever feel at home in a nation hell-bent on eliminating her kind? Think back to the plight of young Janet Tyler in that Twilight Zone episode. After her last failed surgery, the pig-faced people ostracized Tyler to a village of other “misfits,” just like her.
“The problem with eugenics and genetic engineering,” says Michael J. Sandel, political philosopher at Harvard University, “is that they represent a one-sided triumph of willfulness over giftedness, of dominion over reverence, of molding over beholding.”986
Iceland, of course, is entitled to determine its own future. But is it reasonable to say its feticidal practices are improving civilized society or perfecting the human race? Is Iceland superior to nations that value and nurture people with special challenges and aptitudes?
“Christians need to take the lead in educating people that children are gifts,” the late Charles Colson believed, “as my autistic grandson most surely is. By going down the path we’re currently on, we might one day get rid of genetic diseases, but only at the cost of our own humanity.”987
Lured by the conceit in thinking we can improve on billions of years of natural selection—or, if you prefer, on God’s creation, or both—will we truly end up creating a better world? And if so, for whom will it be better?
Clearly, not for the Agustas of the world. That’s why her mother, Thordis, is now asking: “What kind of society do you want to live in?”988
There’s an even deeper question we must answer, says Yuval Noah Harari, an Israeli historian at Hebrew University of Jerusalem. An urgent question crying out to us, as we race to bring humans and all creatures great and small under our complete control. As we rush pell-mell to redesign life in our own selfish image.
“The real question facing us is not ‘What do we want to become?’” he says, “but ‘What do we want to want?’ Those who are not spooked by this question probably haven’t given it enough thought.”989
I completely agree—and hope this book has, at the very least, given you, my dear reader, plenty of food for thought.