1 year later, mystery surrounds China’s gene-edited babies

Chinese scientist He Jiankui shocked world by claiming he h helped make first gene-edited babies. One year later, mystery surrounds his fate as well as irs. He has t been seen publicly since January, his work has t been published and thing is kwn about health of babies. “That’s story — it’s all cloaked in secrecy, which is t productive for vance of understanding,” said Stanford bioethicist Dr. William Hurlbut.

He talked with Hurlbut many times before He revealed at a Hong Kong science conference that he h used a tool called CRISPR to alter a gene in embryos to try to help m resist infection with AIDS virus. work, which He discussed in exclusive interviews with Associated Press, was deunced as medically unnecessary and unethical because of possible harm to or genes and because DNA changes can pass to future generations. Since n, many people have called for regulations or a moratorium on similar work, but committees have bogged down over who should set standards and how to enforce m.

“thing has changed,” said Dr. Kiran Musunuru, a University of Pennsylvania geneticist who just published a book about gene editing and CRISPR babies case. “I think we’re farr from governing this” w than a year ago, said Hurlbut, who disapproves of what He did. However, so much effort has focused on demonizing He that it has distracted from how to move forward, he said.

Here’s what’s kwn about situation:

HE JIANKUI

He was last seen in early January in Shenzhen, on balcony of an apartment at his university, which fired him from its faculty after his work became kwn. Armed guards were in hall, leing to speculation he was under house arrest. A few weeks later, China’s official news ncy said an investigation h determined that He acted alone out of a desire for fame and would be punished for any violations of law. Since n, AP’s efforts to reach him have been unsuccessful. Ryan Ferrell, a media relations person He hired, declined to comment. Ferrell previously said He’s wife h started paying him, which might mean that He is longer in a position to do that himself. Hurlbut, who h been in touch with He early this year, declined to say when he last heard from him.

BABIES

Chinese investigation seemed to confirm existence of twin girls whose DNA He said he altered. report said twins and people involved in a second pregnancy using a gene-edited embryo would be monitored by government health departments. thing has been revealed about third baby, which should have been born from that second pregnancy in late summer. Chinese officials have seized remaining edited embryos and He’s lab records. “He caused unintended consequences in se twins,” Musunuru said of gene editing. “We don’t kw if it’s harming kids.”

ORS WHO WERE INVOLVED

Rice University in Houston said it is still investigating role of Michael Deem, whose name was on a paper He sent to a journal and who spoke with AP about He’s work. Deem was He’s viser when He attended Rice years ago. AP and ors have reported on ditional scientists in U.S. and China who knew or strongly suspected what He was doing. “Many people knew, many people encourd him. He did t do this in a corner,” Hurlbut said.

SCIENCE

Scientists recently have found new ways to alter genes that may be safer than CRISPR. Gene editing also is being tested against diseases in children and ults, which is t controversial because those changes don’t pass to future generations. Some scientists think gene editing will become more widely accepted if it’s proved to work in those situations. “It’s moving forward slowly because it’s being done responsibly,” Musunuru said.

PUBLIC OPINION

A forum was held in Berkeley, California, last month to get public views on gene editing — everything from modifying mosquitoes and crops to altering embryos. National Acemy of Sciences recently pulled a video it me after concern arose about how it portrayed ethically dicey science and its possible use to make designer babies. acemy has been leing some efforts to set standards for gene editing, and it gets most of its funding from government, although a private grant paid for video, a spokeswoman said. An AP/RC poll last year found that most Americans say it would be OK to use gene-editing to protect babies against disease, but t to change DNA so children are born smarter, faster or taller.

REGULATION

A moratorium is longer strong eugh, and regulation is needed, CRISPR pioneer Jennifer Doudna of University of California, Berkeley recently wrote in a commentary in journal Science. She ted that World Health Organization has asked regulators in all countries t to allow such experiments, and that a Russian scientist recently proposed one. “ temptation to tinker” with DNA of embryos, eggs or sperm “is t going away,” she wrote.