The Chinese scientist who claims to be the world's first to edit the genetic code of a pair of recently born twin baby girls, to make them resistant to HIV, the AIDS virus, has defended his work and says there is another potential pregnancy.
But assurances he has given that the experiment will be reviewed by a scientific journal have done little to set aside growing questions. He Jiankui’s research, which was suddenly revealed shortly before an international gene editing summit in Hong Kong, has sparked a wide range of questions about the safety and ethics of the experiment, as well as the funding of the research.
A group of more than 120 Chinese scientists, who spoke out earlier in the week has grown. In a statement released Thursday, which has now been signed by more than 300 scientists both in China and overseas, the petition asks 10 pointed questions, including what is the real point of the experiment? Where did the funding come from and who will guarantee the rights of the two baby girls – known as Lulu and Nana – are looked after?
“We not only need to ask was the experiment really carried out to help the couples involved? Or was it just use them as innocent lab rats to fulfill his (He Jiankui’s) own personal ambition or potentially huge business interests?” the statement asked.
During a question and answer session in Hong Kong on Wednesday at the Second International Summit on Human Genome Editing, He said the interests of the families and the babies were his first concern.
He also said the research was largely self-funded, a claim other Chinese scientists find hard to believe.
“All the patients medical care expenses was paid by myself and a small amount of (gene) sequencing costs was covered by staff funding at the university (Southern University of Science and Technology),” He said.
He’s university said he has been on leave from his position since February.
In their statement, scientists estimated that such an experiment with staffing and in vitro fertilization costs, as well as monkey test subjects, could cost millions of dollars.
Scientists also expressed concern the research would not only set a dangerous precedence, but went against Chinese law and an international consensus regarding gene editing.
“We demand that these questions receive a swift, rigorous and comprehensive investigation and response,” the statement said. “If there is no punishment, it will send the wrong message that anyone with ambition and funding, much like He can carry out experiments in the dark.”
Participants at the Human Genome Editing Summit in Hong Kong issued a strong statement on Thursday, blasting their colleague’s experiment, calling it “deeply disturbing” and “irresponsible.”
In its response, the organizing committee of the summit said: “Even if the modifications are verified, the procedure was irresponsible and failed to conform with international norms.”
In comments on Wednesday, Nobel Prize-winning biologist David Baltimore also shared his concern. Baltimore is the chair of the conference.
“I don’t think it has been a transparent process, we’ve only found out about it after it has happened and after the children are born,” he said, speaking before the question and answer session for He Jiankui. “I think there has been a failure of self-regulation by the scientific community because of a lack of transparency.”
The big question that comes next is how Chinese authorities will handle the incident and He Jiankui. China’s National Health Commission and Ministry of Science and Technology have made it clear that punishment must be handed down in accordance with the law.
Lawyers in China, however, have already begun to point out the legal loopholes that exist and could frustrate efforts to take legal action. In an online blog, Guangzhou-based lawyer Zhou Xiaoyun noted that while there are administrative regulations for gene modifications, such clauses could not be found in criminal law.
Zhou suggests that a national level investigation should be launched into the case and that a probe into all of those involved, not at the local level.
“A criminal law should be quickly established banning the human experimentation of gene editing,” he said. “However, given that Pandora’s box has already been opened, such measures to remedy the problem will only slightly delay its impact.”
So far, the Guangdong Province’s Health Commission and Shenzhen City have set up an investigation into his case as has the Southern University of Science and Technology, where He is an assistant professor.
A clinical database shows that He did receive an ethical review for his research from a hospital in Shenzhen, but that facility denies ever meeting to discuss his work.
Chen Hsin-fu, a gynecologist at National Taiwan University Hospital in Taipei, said that while it is hard to say how authorities in China will ultimately handle the case, he expects some punishment to be handed down.
“Clearly the case has exposed both moral and scientific flaws,” Chen said. “And if his claims are true, the long term care of these two babies will be a big concern and problem because some unexpected problems could come up.”