Researcher who edited humandisney magic location gene suspended

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He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong on Nov 28. [Photo by Parker Zheng/China Daily]

He Jiankui, the Chinese researcher who claimed to have created the world"s first gene-edited babies, has been suspended from any scientific activities amid mounting questions from government agencies and academicians about the experiment.

In a fertilized human egg cell, He sought to disable a gene that forms a protein doorway that allows the HIV virus to enter, intending to make the resulting person resistant to HIV.

"The case, as media have reported, is a blatant violation of China"s laws and regulations, and it breaks the bottom line of academic morality and ethics," Xu Nanping, vice-minister of science and technology, said on Thursday in an interview with China Central Television. "It"s shocking and unacceptable."

Xu said the ministry has ordered relevant authorities to suspend all scientific activity of people involved with the case, and will mete out punishments together with other authorities based on the results of the investigation.

Zeng Yixin, vice-minister of the National Health Commission, said on Thursday that the commission has paid close attention to the reports and has sent a working group to assist in the probe.

He Jiankui is based in Shen-zhen, whose government joined Guangdong provincial authorities in an investigative group on Tuesday.

With the rapid development of science and technology, the research and application of science must be more responsible and follow technical and ethical norms, Zeng said.

He, an associate professor at the Shenzhen-based Southern University of Science and Technology, announced on Monday that twin girls, Lulu and Nana, were born healthy earlier this month after in vitro fertilization. Gene editing technology had been used to immunize them from HIV, he said. The news shocked the world and aroused widespread criticism both for its ethics, technical flaws and the necessity of such a procedure to prevent AIDS.

"Proud" of work

Attending the Second International Summit on Human Genome Editing in Hong Kong on Wednesday, He announced that he was "proud" of his work and believed he was helping people with HIV (the twins" father is HIV positive) but declined to reveal the babies" identities, citing China"s policy regarding privacy in cases involving HIV/AIDS.

Many scholars spoke against the research, saying it violated ethical norms and was unnecessary because couples where the male is HIV-positive can have virus-free children through the application of existing medical technology.

On Thursday, the organizing committee of the summit released a statement saying that the experiment was "irresponsible and failed to conform with international norms".

"Its flaws include an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and lack of transparency in the development, review and conduct of the clinical procedures," it said.

The organizing committee concluded that because the scientific understanding and technical requirements for clinical practice are uncertain, the risks are too great at this time to permit clinical trials of germ line editing —?which can be passed down to offspring.

In an open letter, more than 300 Chinese scientists raised 10 questions for He and his team related to safety, effectiveness and purpose of the research, and whether he has concealed other related experiments from the public.

A top academic body in the country, the Chinese Academy of Engineering, in a statement late on Wednesday, called for the public to strictly guard the privacy of the twins and for the development of a detailed care plan for the babies as they grow "to guard against possible health damage resulting from the gene editing".

"We care deeply about the two babies and appeal for the research and formulation of detailed medical and ethical care plans," it said.

The academy said it hopes the babies will grow up happy and healthy, both physically and psychologically, with "the most care possible that can be provided by society".

Concern for future

Many experts attending the summit in Hong Kong also expressed concern for the babies" future. Robin Lovell-Badge, head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute in the United Kingdom, said the twins" identities should be kept secret to protect them from any social stigma involving HIV/AIDS.

"We hope we will learn from proper clinical studies as they grow up — if that is possible," Lovell-Badge said. He added that "we must not know their identity because that would be very unfair".

There was also debate about the extent of government supervision of the family. Some scientists argued that lifelong institutional study of the girls and their families should be conducted.

Qiu Renzong, a professor at the Chinese Academy of Social Sciences, said that as the twins pass down their altered genetic code, the human gene pool could be affected. Close monitoring of the twins and their offspring will therefore be necessary, Qiu said.