03 December, 2019
Chinese scientist He Jiankui shocked the world last year when he claimed to have helped make the first gene-edited babies.
Now, it is unclear what has happened to him and the babies.
The scientist has not been seen in public since January, and nothing is known about the health of the little ones.
His work has not been published.
"That's the story — it's all cloaked in secrecy," said bioethicist William Hurlbut of Stanford University in the United States. Hurlbut spoke with He Jiankui many times before He reported on his research at a Hong Kong science conference.
He claimed to have used a tool called CRISPR to change a gene in human embryos. His goal was to try to help the embryos resist infection with the virus that causes the disease AIDS.
"I feel a strong responsibility that it's not just to make a first, but also make it an example," He told The Associated Press last year. "Society will decide what to do next," he said.
Many experts denounced his work as medically unnecessary and unethical. They said it was unclear what harm the changes might have caused.
Since then, many experts have called for better rules or even a ban on similar work. But it is unclear who would set policies and who would enforce them.
"Nothing has changed," said Kiran Musunuru, a geneticist at the University of Pennsylvania in Philadelphia. Musunuru just published a book about gene editing and the case of the CRISPR babies.
Where are He Jiankui and the babies?
He Jiankui was last seen in early January at an apartment building. Armed guards were standing nearby, leading some to suspect he was under house arrest.
The university dismissed him from his position with the school after his work became known.
A few weeks later, China's official news agency said an investigation had found that He acted alone out of desire for fame. It also said he would be punished for any violations of the law.
Since then, efforts by The Associated Press to reach the scientist have been unsuccessful. Ryan Ferrell, a media relations person working for He, refused to comment.
William Hurlbut, who has been in contact with He earlier this year, refused to say when he last heard from him.
A Chinese investigation seemed to confirm the existence of the two babies, both girls. The report said they and people involved in a second pregnancy using a gene-edited embryo would be closely watched by government health agencies. Nothing has been said about the third possible baby, which should have been born in late summer.
Chinese officials have seized the remaining edited embryos and records from He's laboratory.
"He caused unintended consequences in these twins," Musunuru said of the gene editing. "We don't know if it's harming the kids."
Who Helped He?
It is unclear who else may have helped He Jiankui in his research.
Rice University in Texas said it is still investigating the actions of Michael Deem, whose name was on a paper He sent to a scientific publication. Deem served as He's adviser when he attended Rice years ago.
The AP and others have reported on other scientists in China and the United States who knew or strongly suspected what He was doing.
"Many people knew, many people encouraged him. He did not do this in a corner," Hurlbut said.
I'm Susan Shand
Marilynn Marchione reported on this story for the Associated Press. John Russell adapted it for Learning English. George Grow was the editor.
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Words in This Story
edit – v. to change and improve with the goal of making ready for a specific purpose
cloak – v. to cover (someone or something)
embryo – n. a human or animal in its early development before it can survive on its own
unethical-- adj. morally bad; not ethical
unintended - adj. not planned as a purpose or goal