In 2016, JK visited Wenlou—the “AIDS village” four hundred miles south of Beijing.31 Hundreds of villagers—almost one in two blood donors—contracted the disease. By the end of 2015, more than two hundred residents had died. Similar tragedies played out in dozens of villages across the province. Aside from the gravestones, JK saw few signs of a national scandal. There are no longer emaciated patients walking in the streets. Many of the orphaned children have left or been sent far away to start a new life, sometimes under a false identity to escape discrimination. In the elderly villagers’ faces, he might have seen flashbacks to his own family and childhood.
Much like China’s initial response to the coronavirus outbreak twenty-five years later, the government’s response to the AIDS crisis was denial or inept. But more recently, the cause of HIV awareness received a high-profile champion—China’s First Lady, Peng Liyuan. In 2017, she received the UNAIDS award for her work fighting HIV discrimination. Surely success in developing a bold new strategy to combat HIV would have support in the highest echelon of the Chinese government.
With Chinese scientists launching the first gene-editing experiments on human embryos, JK saw an opportunity to make an even bigger name for himself. His biggest inspiration was an Englishman almost sixty years his senior—Nobel laureate Robert “Bob” Edwards, the father of IVF. After Edwards died in 2013 at eighty-eight, Nature wrote: “Several scientists have made discoveries that have saved millions of lives. Robert Edwards helped to create them.”32
Edwards met Patrick Steptoe, an obstetrician who worked at Oldham General Hospital, near Manchester, at a conference in 1968 in London. The same year, using oocytes recovered from a woman at Edgware General HospitalII in north London, Edwards performed IVF for the first time. Edwards and Steptoe published their initial results in Nature in 1969, prefaced by one of those classic understatements for which Brits (and Nature) are famous:
Human oocytes have been matured and fertilized by spermatozoa in vitro. There may be certain clinical and scientific uses for human eggs fertilized by this procedure.33
The study didn’t mention “test tube babies.” But Nature’s savvy editor, John Maddox, played up the study in a piece for the Times that appeared on Valentine’s Day. Subsequent newspaper headlines fretted about a “human time bomb,” a “test tube baby factory,” and “the end of human beings as a wild breeding race.” Third World nations could improve their influence and wealth by breeding “a race of intellectual giants.” All this was, I suspect, much to Maddox’s journalistic amusement. It ensured that Edwards and Steptoe’s future work was carried out under the intense glare of the media, not to mention the church and the government.
In 1971, Edwards reported his first success in culturing human blastocysts. “There should be no criticism in giving these [infertile] couples their own children: comments about overpopulation seem to be highly unjust to such an underprivileged minority,” he wrote.34 Despite having their funding proposal rejected, Edwards and Steptoe persevered. Their first attempt at re-implanting an IVF embryo in 1976 resulted in an ectopic pregnancy. But on July 25, 1978, Steptoe delivered Louise Brown, weighing in at 5 pounds, 12 ounces, by cesarean section. Edwards and Steptoe suggested Louise’s middle name be “Joy,” for what she would bring to so many couples. Among the worldwide well-wishers was the Queen’s gynecologist.35 Only two more IVF babies were born in the first couple of years after Brown’s birth, the first in the United States not until 1983. IVF wasn’t legalized in the UK until 1990. But from such small beginnings, the technology blossomed. In the first forty years since Louise Brown’s birth, an estimated eight million IVF babies were born.36
Edwards was finally awarded the Nobel Prize in physiology or medicine in 2010. The honor came too late for Steptoe, who was deceased, and almost too late for Edwards who, suffering from dementia, was unable to travel to Stockholm. His Nobel Prize was roundly criticized by the Vatican but his friends said the honor delighted Edwards—and many grateful fans. One comment left on the Nobel website said: “Dr. Edwards, thank you for my life.”37
JK listed Edwards among his medical role models, along with the time it had taken for them to be duly recognized, in a PowerPoint presentation that he showed to his lab:38
Christiaan Barnard: Domestic, 3 weeks, International, 1 Year
Robert Edwards: 7 years
Edward Jenner: 1 year.
Drawing encouragement from these examples of scientific trailblazers, JK imagined his own future reflected in their image: initially controversial perhaps, but ultimately celebrated as having been in the vanguard. It was all about having the courage to take a controversial first step—breaking the glass—and thereby pushing science and humanity forward.
I. Shuping Wang, a naturalized American citizen, died in 2019 after suffering a heart attack while hiking outside Salt Lake City. Her whistleblower experience inspired a play, The King of Hell’s Palace, which premiered in London. Wang publicly called out the pressure placed on her family in China from authorities to call off the production. Twenty-five years later, China again showed its disdain to the medical whistleblowers of the coronavirus pandemic.
II. Also my birthplace, it should be noted.
CHAPTER 16 BREAKING THE GLASS
In March 2016, Michael Deem visited Shenzhen to speak at a small symposium on “Biodynamical Systems.” In the official group photo, Deem stands tall in the center of the group. His smiling protegé, He Jiankui, is easily recognizable. Deem’s lecture was on CRISPR, the same topic on which JK and Deem had once published together. How far CRISPR had progressed since then: it was now a universal genome editing tool, spawning several biotech companies hoping to cure cancer and genetic disorders.
Six months later, SUSTech announced that Deem, listed as a member of the university’s Department of Biology, and He Jiankui had won a $5.7 million grant as part of Shenzhen’s Peacock Plan for further development of their sequencing system. The thrill of building a company like Direct Genomics with the prize of cracking China’s clinical market would have satisfied the ambitions of most biotech entrepreneurs. But although he did not have any hands-on experience using CRISPR, JK was contemplating an even more daring venture.
JK first discussed his idea to edit human embryos privately with Quake, his former Stanford supervisor, in 2016. The response wasn’t what he was expecting. “That’s a terrible idea. Why would you do that?” Quake told him.1 JK reluctantly agreed with Quake’s advice that, at a minimum, he should obtain the appropriate ethical approval and patients’ informed consent. JK promised to do so, emailing later: “I will take your suggestion that we will get a local ethic approve [sic] before we move on to the first genetic edited human baby. Please keep it in [sic] confidential.” Quake thus became the first of a small but not insignificant “circle of trust”—scientists and ethicists in whom JK confided and sought advice. Their reactions varied upon learning of JK’s intentions, but no one broke a confidence or blew the whistle.
That summer, JK traveled to New York to attend the biggest conference on CRISPR and genome editing, held at Cold Spring Harbor Laboratory on Long Island. During one of the breaks, JK introduced himself to Doudna, one of the meeting co-organizers, and posed for a selfie with her sitting in the front row of the Grace auditorium, which he posted on WeChat.2 Doudna took such requests in stride: she is about as popular as Taylor Swift, graciously allowing photographs from admiring students and scientists at every event.