International concern mounts over PRC’s enabling of gene-edited babies

FORUM Staff

More than a year has passed since Chinese scientist Dr. He Jiankui claimed he helped create the world’s first gene-edited babies with a technique, known as Crispr, and researchers worldwide continue to condemn his actions as well as the Chinese government’s role in the fiasco. 

In a December 3, 2019, report, Technology Review magazine, which broke the original story, published excerpts of He’s unpublished manuscript for the first time and corresponding comments by researchers who further blasted his work for flouting ethical and scientific norms. The female twins were born in the People’s Republic of China (PRC) in October or November 2018 to a woman who had the modified embryos implanted in her womb at a PRC-backed institute, various media reported. (Pictured: Dr. He Jiankui presented his gene-editing work in babies at a November 28, 2018, conference in Hong Kong.) 

“We already know that there were profound ethical problems with He’s work in germline gene editing, which refers to genetic alterations to embryos — or to egg or sperm cells — that can be passed down through the generations. But its scientific merit, and especially its safety, have remained in question,” Dr. Kiran Musunuru, a University of Pennsylvania geneticist, wrote in an accompanying opinion piece for Technology Review.  

He, who was then admonished as “China’s Frankenstein” and “stupendously immoral,” has not been seen publicly since January 2019 on his apartment balcony at his then university in Shenzhen, China, where his residence was surrounded by armed guards, according to The Associated Press (AP). Soon thereafter a report by the PRC’s state news agency claimed: “He acted alone out of a desire for fame and would be punished for any violations of the law,” AP reported.  

Despite the PRC government’s denials of its involvement and the announcement in January 2019 of the subsequent firing of He from his research position at Southern University of Science and Technology in Guandong province, documents reveal that at least three government agencies in China may have helped fund his work, including the PRC’s ministry of science and technology, the Shenzhen Science and Technology Innovation Commission, and his then employer, according to a late February 2019 report in STAT, a Boston Globe online publication. 

“They want him to be the scapegoat, so everybody else can be vindicated,” Jing-Bao Nie, a bioethicist at the University of Otago in New Zealand, told STAT. “But this would disguise serious institutional failures.” 

How the infants are faring is also not known. A third child treated with the Crispr technology was due to be born several months ago, AP reported.  

The PRC has failed to conduct a transparent investigation into He’s work, according to an in-depth report by Science magazine, published in August 2019. 

“Because the Chinese government has revealed little and He in not talking, key questions about his actions are hard to answer,” the magazine reported.  

The PRC’s failure to provide oversight of scientific research not only in this case but in general and a lack of ethical standards remains a long-standing concern in the science community, some experts contend. 

Scientists have speculated that when He tried to deactivate a gene that makes a protein that enables HIV, the virus that causes AIDS, to infect cells, He could have also made unintentional changes elsewhere in the girls’ genomes. Also, it is likely that the alterations he made were not uniform so the changes may not extend to the twins’ entire bodies, and they could still be vulnerable to HIV, Musunuru explains in his Technology Review article. The children’s offspring could also suffer the consequences of the experiment. 

Alternatively, He might have enhanced some other brain functions such as memory and cognition, although evidence for this is shaky, according to Science. Another possibility is that the editing could have no effect at all. However, no one knows for sure, given the continued secrecy surrounding the work, Science reported. 

Critics have also charged that there are much better and safer ways to protect infants from contracting HIV from an infected parent, AP reported. 

Various groups of scientists and international authorities, including the World Health Organization; U.S. National Academies of Sciences, Engineering and Medicine; and the Royal Society are working to establish safety measures and better oversight processes to ensure similar research doesn’t proceed without proper protections. A Russian scientist told the journal Nature in June 2019 that he is interested in conducting gene-editing work in babies. 

Little progress has been made, however, in establishing international guidelines on gene-editing or on implementing a moratorium despite increasing calls for one because committees have been weighed down by questions over who should set standards and enforce them, leaving the door open to future such scandals.  

“Nothing has changed,” Musunuro told AP. 

“I think we’re farther from governing this” now than a year ago, Stanford bioethicist Dr. William Hurlbut, who disapproves of what He did, told AP in late November 2019.  

There is evidence that many researchers in China and possibly one or more in the U.S. had some inkling of what He was intending to do before he did it. “Many people knew, many people encouraged him. He did not do this in a corner,” Hurlbut told AP. 

Ryan Ferrell, a public relations expert hired by He, told Science that roughly 60 people, including well-known researchers, business executives, entrepreneurs and at least one Chinese politician “knew or suspected what He was doing before it became public.”  

“He had an awful lot of company to be called a ‘rogue,’” George Church, a Crispr pioneer at Harvard University, told Science.