Later that year Quake called Lombardi, who had moved to Connecticut and launched a consulting business after Helicos folded, to see if the former CEO would like to serve as JK’s business mentor. For the next two years, Lombardi helped JK manage the financial and strategic aspects of growing his company. He introduced him to some leading Wall Street analysts covering genomics. “He bought my rolodex,” Lombardi told me.23 In July 2017, JK proudly posed for photographers next to the prototype GenoCare at the instrument’s official debut in Shenzhen. The launch of the world’s first “third-generation sequencer” featured congratulatory speeches by various government dignitaries and senior Chinese scientists. By 2018, the company had raised nearly $35 million and claimed to be manufacturing 1,000 instruments a year to meet burgeoning demand.
All very impressive, as was JK’s involvement in several other business ventures, including a liquid biopsy company called Vienomics. But apparently it was not enough. Like Icarus, the son of a master craftsman, the boy from Xinhua was setting a course perilously close to the sun.
A few months after the furor surrounding the first Chinese embryo editing study in 2015, the British government granted its official seal of approval to a very specific form of germline editing called mitochondrial replacement therapy (MRT). Sometimes called “three-parent IVF,” MRT was pioneered by Douglas Turnbull at the University of Newcastle. His inspiration was meeting Sharon Bernardi, a mother from nearby Sunderland, who had buried seven children in three different cemeteries because of a mitochondrial disease called Leigh syndrome. Her fourth son Edward lived until twenty-one, but was often writhing in pain. “I don’t want my son to have just died for nothing,” Bernardi said. “We’re trying not to pass it on to children and make it better for future families.”
Mitochondria are the capsule-like power-stations inside our cells that create adenosine triphosphate, ATP, the molecule that provides energy for myriad cellular processes. Mitochondria contain a tiny circular piece of DNA, almost insignificant compared to the size of the nuclear genome, encoding just a few dozen genes—less than 0.2 percent of the human genome. But just like the 20,000 or more genes on our twenty-three pairs of nuclear chromosomes, these mitochondrial genes can suffer damaging mutations. These mutations result in a range of debilitating, sometimes hard-to-diagnose genetic diseases, including Leigh’s disease, that affect 1 in 5,000 births. Importantly, mitochondria are only inherited through the maternal line. That means if the mother has a mitochondrial disorder, she will inevitably pass it onto her children, boy or girl.
Designed to help at-risk pregnancies, MRT is a modified version of IVF. Before fertilization, the nucleus of an egg from the affected mother is swapped into an enucleated egg from a donor that has healthy mitochondria. Following IVF, the resulting embryo can claim three parents—the complete set of twenty-three chromosomes provided by both father and mother plus the smidgeon of mitochondrial DNA from the woman who donated the hollowed oocyte. (If you want to get mathematical about it, it’s not so much “three-parent” as “2.001 parent.”)
In October 2015, the British parliament became the first country to legalize MRT with the passage of the Human Fertilization and Embryology Act. With almost fifteen years of research and preparation in the balance, Turnbull was understandably stressing out in the public gallery when the House of Commons voted on the bill. As the vote totals were announced showing comfortable passage, cheers of delight burst out from Turnbull’s guests, patients, and family members, followed by tears of relief. The bill was ratified in the House of Lords, where Viscount Matt Ridley voiced his support. “Britain has been the first with most biological breakthroughs. In every case we look back and see we did more good than bad as a result,” he said. Failure to act to prevent suffering would be on their consciences, adding: “There is nothing slippery about this slope.”24
But there were still regulatory hurdles to overcome before the first clinical experiments could take place. In April 2016, the world’s first “three-parent” baby boy was born to Jordanian parents in Mexico City. The mother had lost two children and suffered four miscarriages because of Leigh’s disease. John Zhang, a Chinese-born, British-educated fertility expert based in New York, performed the spindle nuclear transfer procedure that produced five embryos. Only one developed normally, which Zhang implanted. He defended his decision to do the procedure in Mexico, saying “to save lives is the ethical thing to do.”25
Through his spin-off company, Darwin Life, Zhang attempted to offer a similar service for older women to transfer the nucleus into the egg cells of a younger woman. The FDA quickly stepped in, citing a 2015 Congressional amendment that forbids the agency from considering applications in which a human embryo is deliberately created or modified to include a heritable genetic modification. Zhang’s company complied but he still believes that germline editing will be useful in the future. Any technology that will eventually benefit humankind should be allowed, he told the Washington Post. “Look at history: People were against antibiotics, general anesthesia, vaccines.”26 Zhang has partnered with a Ukrainian physician, Valery Zukin, as reports of MRT babies in countries like Ukraine and Greece continue.27 28
Turnbull and his colleagues weren’t overly upset by Zhang’s scoop. “The translation of mitochondrial donation to a clinical procedure is not a race but a goal to be achieved with caution to ensure both safety and reproducibility,” said Alison Murdoch.29 In 2018, the British Government’s Human Fertilization & Embryology Authority (HFEA) granted permission for the first MRT procedures to take place for two women. Within twelve months, a dozen more applications were approved. We await news of the first pregnancy.
Meanwhile, using philanthropic funds, Dieter Egli at Columbia University has used MRT to create “three-parent” embryos for several women with mitochondrial disorders. Those embryos remain frozen in legal limbo until US regulations change,30 either through legislation or possibly litigation. Whether MRT is a natural extension of IVF or a crossing of the Rubicon is open to debate. But the families affected insist they’re not trying to fashion designer babies or playing God. They just want a healthy, biologically related child.
“Extend your arm. Expose a vein. Make a fist. And it’s 50 yuan.”
In the early 1990s, China’s rural Henan province was the epicenter of a devastating black-market blood drive. “Blood heads” set up stations across the province to buy blood from hapless peasants, from which plasma could be separated and sold abroad. For the farmers, the “plasma economy” was a godsend worth the princely sum of fifty to seventy yuan, enough to buy kilos of rice, save for a portable television, pay school bills, or even build a small house. Tragically and predictably, the use of unsterilized needles and the mixing of blood samples before reinfusing to volunteers led to an HIV epidemic, a “nameless fever,” to which the local authorities turned a blind eye. It took a local doctor, Shuping Wang,I to finally get the attention of authorities in Beijing, which has provided free HIV drugs since 2003.