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Macmillan Childrens Publishing Group

The Mutant Project

Inside the Global Race to Genetically Modify Humans

Eben Kirksey

St. Martin's Press




Imagine that the story of the world’s first CRISPR babies began with a different opening scene. On a flight from London to Hong Kong a thirty-three-year-old Irish geneticist, Helen O’Neill, struck up a conversation with a fellow traveler in the seat beside her. He asked her: “If there is one thing that you want to be remembered for, what is it?” She said that she wanted to go down in history as the first scientist to usher an edited baby into the world. Like Dr. He, who was just a few months older than her, Dr. O’Neill had been hoping to make a breakthrough use of this technology. After the news from the summit, her traveling companion found her on LinkedIn and wrote: “I bet you are glad that you weren’t first.”

We met for brunch in Hong Kong on a Sunday, just a week after this flight, right after the summit concluded. I was feeling groggy, almost hung over. Helen O’Neill told me that she had a laboratory set up at University College London with all of the equipment needed to genetically engineer human embryos, but she was actively reevaluating her ambitions and life goals. “I’m quite glad that I wasn’t first,” she said. “I would still like to do it and do it properly. But I don’t want to be under scrutiny, with people constantly wondering: What are you doing?

O’Neill was frustrated by the haste and sloppy nature of Jiankui He’s research. “It’s scientists like this who ruin it for the rest of us,” she said. At the same time, she recognized that nationalistic sentiments, a mistrust of China, and even racism might have influenced how people responded to his research. She said: “If this was done in America or Europe it may have been an entirely different narrative.”

A few days earlier, when she delivered a lecture at the summit, O’Neill had talked about two British scientists who were familiar to most of the experts in the audience. When Patrick Steptoe and Robert Edwards created the world’s first “test-tube baby” in 1978, a firestorm of controversy erupted, with the press, the pope, and prominent scientists criticizing their research. Their clinic was shut down for two years. Eventually Steptoe and Edwards secured private funding and continued with their experiments, developing the first in vitro fertilization (IVF) techniques, even as society was clearly telling them to cease and desist. Their work was recognized with a Nobel Prize—but only in 2010, after thirty years had passed and IVF had become commonplace.1

O’Neill also had talked about another researcher whose name was all but unknown among the summit delegates. Subhas Mukerji, an Indian physician, independently discovered in vitro fertilization. The world’s second IVF baby was born in Calcutta just sixty-seven days after the first was announced in England. Dr. Mukerji pioneered cryogenic techniques—freezing and thawing human embryos. But the Indian government reprimanded the maverick scientist. After being ostracized by society, Mukerji committed suicide.2 “Something can be catastrophic to someone’s career, and sometimes—in another cultural setting—it can be accepted and very much celebrated,” O’Neill said.

Helen O’Neill still wanted to conduct genetic surgery experiments in embryos—to take out unwanted mutations and “fix disease-causing genes.” A fertility clinic in London was running out of storage space and was preparing to discard part of their embryo collection. She hoped to acquire a liquid nitrogen tank from the clinic with hundreds of frozen embryos. All the embryos had been donated to research by prospective parents, who had been trying to have a baby with in vitro fertilization. Genetic tests revealed that each of these embryos was idiosyncratic, with different undesirable traits—everything from cystic fibrosis to a blood disease called beta thalassemia. O’Neill wanted to conduct experiments with CRISPR, and other tools for tinkering with DNA, to see if she could fix these genetic diseases.

O’Neill argued that CRISPR could be used to eliminate genetic diseases in cases where effective alternatives do not yet exist. The bold call from the summit leadership to proceed with new experiments, she explained, was driven by a technical fact: genetic engineering technologies will probably be most effective in freshly fertilized eggs, where there is just one or two cells to target. Gene therapy clinical trials in adults had met with limited success because it is very difficult to effectively deliver genetic changes to the whole body. The average adult has around 37 trillion cells, each of which has its own DNA bundled up in chromosomes, and it would be extremely difficult, if not impossible, to hit them all with CRISPR.

Most of the embryos that O’Neill was trying to get from the London fertility clinic had been frozen between three to five days after fertilization, so they had from eight to two hundred cells. Even so, CRISPR is far from 100 percent accurate, so she knew that it would be hard to “correct” the faulty genetic code in each embryonic cell. Nevertheless, O’Neill believed that CRISPR could give families with genetic diseases the opportunity to have healthy children.

Desperate parents-to-be who are actively trying to have a child are prepared to pull out all the stops. “They would give you their arm, they would do anything,” O’Neill said. However, she had not actually met any of the couples who had donated the embryos to the London clinic. She wondered if the families had already found a way to have healthy children, or if they were still holding on to hope for scientific innovation. Some of the embryos in the tank had been donated upward of ten years ago, when the possibility of modifying undesirable genes seemed remote. Some donors, well beyond their years of normal fertility, might suddenly have new options for reproduction very late in life. If CRISPR clinical trials with embryos are given the green light in England, she could imagine these parents asking: “You have my embryos? Where are they? Can they be corrected?” It could be unethical to modify the genes of these embryos and not transfer them back into their mothers’ womb, she argued.

Helen O’Neill warned me that research with CRISPR on human embryos involves unknown risks in addition to the many known risks of IVF. Taking high doses of hormones, surgically removing eggs, and implanting an embryo with standard IVF are all “quite invasive procedures for the woman,” she said. “It is a long process, but it is also quite a stressful one—on the endocrine system and on the emotional system.” Dr. O’Neill is a woman in science, a rising star in a field that has been traditionally dominated by men. She would like to see stronger ethical guidelines and better laws to protect women from frivolous experimental practices and the excesses of profit-driven medicine.

While Dr. He had been forging ahead with unbridled speed, she was working in parallel, but more slowly, with prudence and caution. Dr. O’Neill shared many of Dr. He’s basic values, ambitions, and beliefs. She was a CRISPR enthusiast and thought that it would be ridiculous to not use this powerful new tool. Before the summit she had been preparing an application to the Human Fertilisation and Embryology Authority, the part of the British government that keeps an eye on embryo research and fertility clinics. She had already meticulously filled out reams of paperwork and was ready to jump through more bureaucratic hoops. She knew that everything had to be signed and sealed before she could begin this experiment.

As we talked together in Hong Kong, she helped me wrap my head around the technical details of Dr. He’s experiment. I also helped her understand some of the core ethical issues at stake.

* * *

From a technical point of view, Dr. He’s experiment was relatively simple: he just brought established IVF clinical methods together with emergent knowledge about genetic surgery. The women who signed up for the study took hormones to stimulate their ovaries, then had an ultrasound probe inserted into their vaginas followed by a long needle that sucked eggs and fluid out of their ovaries. An embryologist fertilized the eggs by injecting them with sperm. Then the same equipment was used to inject CRISPR. After the cells were grown in culture and studied for possible genetic damage, they were inserted—or transferred—back into the women’s wombs with a long flexible tube.

Philosophically speaking, the birth of the first CRISPR babies was a profound moment for humanity. Scientists have been talking openly about altering the genes of human babies at least since the 1950s, when Watson and Crick described the DNA double helix. Hannah Arendt, the celebrated German thinker who narrowly escaped the Nazis, was one of the early critics who alerted the public about scientific enterprises aiming “to produce superior human beings.” Writing in 1958, as nuclear weapons proliferated and satellites were being launched into space, Arendt reported that scientists were striving “to create life in the test tube” and “mix germ plasm from people of demonstrated ability under the microscope.” Researchers promised to create “future man” within a hundred years. Arendt had no doubt that scientists could technically achieve this. Her definitive book on the subject, The Human Condition, also noted that “there is no reason to doubt our present ability to destroy all organic life on earth.”3

Elements of future man arrived well ahead of schedule. After the first test-tube baby was hailed as a “miracle” in 1978, more than 8 million IVF babies were born worldwide. IVF has not resulted in apocalyptic doom for the human species. With very low success rates and a long list of risks and side effects, the first generation of fertility treatments turned out to be banal rather than miraculous.

The Holocaust involved the “banality of evil,” in Hannah Arendt’s words, when bureaucrats decided to exterminate the disabled, Jewish people, homosexuals, and others who were deemed inferior to the Aryan race. Banal technology could now indirectly further the Nazi agenda if researchers continue on the quest “to produce superior human beings.”

Scientific innovation can produce new forms of inequality and discrimination. At the same time, emergent technology has proved useful in social justice movements. “The long struggle of racial equality propelled tactical ingenuity,” writes Alondra Nelson in The Social Life of DNA. Activists have already found ingenious ways of using new technologies to advance social justice goals.4 DNA tests have been used by immigrants to identify bodies of missing family members on the US–Mexico border, and also to exonerate many innocent prisoners accused of murder. Impoverished women have used fertility treatments to fight racism and classism all over the world, insisting that IVF technologies do not belong exclusively to affluent white women.5

Personal hopes about having a child and widespread faith in scientific progress have long been pushing reproductive technology into unknown territory.6 When Jiankui He stepped further into the unknown, people all over the world took notice. As decades-old scientific dreams came into contact with reality, multitudes of people outside institutions of scientific power were wondering about the same fundamental question: Should we produce future man? All the while, powerful science and technology corporations continued to work behind the scenes, quietly remaking the human condition.

* * *

As we ate in the Hong Kong café—O’Neill enjoying eggs Benedict with salmon, while I munched an avocado on toast—she said: “It is quite strange that every food that we eat has to have the ingredients on it, and yet we can grow human embryos in a culture and we don’t know the ingredients.” She told me about “culture media,” the fluid that gives human embryos nutrients in the first moments of life when they are grown in a laboratory. Biotech companies specializing in reproductive medicine were carefully guarding their special sauce—keeping the ingredients hush-hush, even from insiders.

Medical clinics and large biotechnology companies were already making money from selling these chemical cocktails plus other unproven treatments to hopeful women who were trying to get pregnant. As a result, Helen O’Neill shared one of my core concerns: she was worried that commercial ventures would push CRISPR into fertility clinics before the science was ready. This was not just a special issue related to DNA engineering in the near future. Related problems were already impacting the field worldwide.

Profit-driven companies were already offering a host of expensive and scientifically unproven “extra” procedures, tacking them onto regular IVF. Chemical treatments like “embryo glue” and surgical procedures like “womb scratching” had been rolled out in the clinic before they were scrutinized according to rigorous scientific standards, she said. “I would call it a scandal at the moment with assisted reproductive technologies. I think that it is very strange that things were brought into the clinic without randomized control trials.”

Now it is routine to inject sperm into an egg as part of standard fertility treatments, but this procedure was discovered by mistake. “The needle went in accidentally,” said O’Neill. The resulting embryo looked healthy, so it was later transferred by a different doctor. No rigorous tests were conducted, but after this accident, sperm injection “was just taken up as a new practice.”

By injecting sperm into eggs as a routine part of IVF, she wonders, “are we breeding an entire generation of infertile men?” She added: “No long-term studies have really been done aside from the obvious—males who have been born this way tend to have a lower fertility rate overall, which makes sense given that many of their fathers were infertile.” A few decades down the road these boys may need to return to the fertility clinic. “I guess it makes for a good business plan,” Helen O’Neill continued, as reproductive clinics were creating “repeat customers.”

Freezing eggs and embryos by plunging them into liquid nitrogen was also quickly pushed into the fertility clinic with little testing. Now we know that the process of freezing an egg and then later thawing it can itself produce potentially harmful changes to DNA. Women should be given clear warnings about the limits of technology, she said, “rather than just being offered expensive ways to bend biology. With someone who is over forty-two, there is such a low chance of pregnancy that it is unfair to offer to freeze eggs and offer false hope.”

IVF clinics have a history of making money from couples who have little chance of actually getting pregnant. “What I find so corrupt is that you are talking about the most vulnerable patients there are,” she argued, “that is, somebody who wants a baby.” Since IVF has very low birth rates—ranging from 29 percent for women under thirty-five to less than 2 percent for women over forty-four—many clinics have tried to inflate their success by playing with numbers. Some doctors were reporting “chemical pregnancies,” rather than clinical pregnancies, where a fetal heartbeat is heard. These statistics have misled patients. “When clinics started to get a rap on the knuckles for doing this, they agreed to publish their live birth rates,” O’Neill continued. Despite this, many were still fudging the numbers by reporting live birth statistics that were actually the result of multiple rounds of IVF.

The United Kingdom was offering free IVF to women who qualified through the National Health System. Government-funded clinics were making British women wait for two years of actively trying to get pregnant the old-fashioned way before offering them free IVF treatments. Rather than postpone their plans to have a family, many British women were opting to pay upward of $6,500 for each round of treatment at private IVF clinics.7 Financial considerations had become an even bigger part of the equation in other countries. Clinics in the United States were charging some women more than $20,000 for each IVF round, depending on how many extra procedures were thrown into the basket.8 In the UK, patients are given a choice—do they want the free IVF basics, or do they want expensive extras?

Large profit-driven corporations were buying up IVF clinics worldwide and continuing to roll out new expensive and untested procedures. Since many countries lacked clear laws about fertility treatments, Helen O’Neill was concerned that the free market would continue pushing CRISPR into the clinic in countries with lax regulations.

As journalists started to speculate about which country might host the next controversial experiment in the global competition to create genetically modified humans, I returned to where it all had started. I wanted to better understand the uneasy relationship between free market principles and Communist values, in a country that had lifted millions from abject poverty. The spectacular rise of Jiankui He seemed to fit the story line of the “China Dream”—an official national policy that aims to displace the status quo of Western modernity and replace it with an Asian future.

Copyright © 2020 by Eben Kirksey