His team at the Southern University of Science and Technology in Shenzhen made use of CRISPR, the versatile genetic engineering tool, to alter the girls’ DNA to make them resistant to HIV infection.
It is unclear whether He has plans to return to scientific research in China or another country. People who know him have described the biophysicist, who trained at Rice University and Stanford, as idealistic, naive and ambitious.
Before his world came crashing down around him, he believed he had created a new way to “control the HIV epidemic” that would be considered for a Nobel Prize.
MIT Technology Review discovered the existence of the CRISPR project for babies on the eve of an international genome editing summit in Hong Kong in November 2018. After our report, it immediately posted several videos on YouTube announcing the birth of the twins. whom he called Lula and Nana.
The experiment was met with fierce condemnation around the world and within China. The scientists said the use of genome editing served little medical purpose and could have introduced errors into the girls’ genomes.
His description of the experiments was never published by any scientific journal. MIT Technology Review later obtained drafts of the article from him, which one expert said were riddled with “egregious scientific and ethical lapses.”
The investigator spent around three years in China’s prison system, including a period of detention before his conviction. Since his release, he has been in contact with members of his scientific network in China and abroad.
While responsibility for the experiment fell to He and other members of the Chinese team, many other scientists were aware of the project and encouraged it. These include Michael Deem, a former Rice University professor who was involved in the experiment, and John Zhang, the director of a large IVF clinic in New York that had plans to commercialize the technology.
Deem left her position at Rice in 2020, but the university has never released any findings or explanations about her involvement in creating the babies. Deem’s LinkedIn profile now includes jobs at an energy consulting company he founded.
“It is extraordinary and unusual that [He Jiankui] and some of his colleagues were jailed for this experiment,” says Eben Kirksey, associate professor at the Alfred Deakin Institute in Australia, and author of the mutant project, a book about the He experiment that includes interviews with some of the participants. “At the same time, many of [his] international contributors, such as Michael Deem and John Zhang, were never formally sanctioned or censured for their involvement.”
“In many ways, justice hasn’t been done,” says Kirksey.
He paid a high price. He was fired from his job at university, separated from his wife and young children, and spent time in a prison far from his hometown of Shenzhen.
His punishment appears to have delayed further gene-editing experiments to make babies, certainly in China. In the US, the procedure is effectively banned through a law that prohibits the Food and Drug Administration from approving such a study.
There is also the question of justice for the three children born as a result of the experiment, whose identities are not public. Their parents agreed to join the experiment because all the children’s parents had HIV and otherwise would not have had access to IVF under Chinese standards.
In February, according to a news report in Nature, two Chinese bioethicists called on the Chinese government to create a research program to monitor the health of CRISPR children. They classified the children as a “vulnerable group” and called for genetic tests to determine if their bodies contain genetic errors that could be passed on to future generations.
Kirksey says the study participants have not been treated fairly. They were promised health insurance plans for their children, but she says that in the midst of the controversy, “the insurance plans were not issued and the medical bills were not paid.”