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How the genome-edited babies revelation will affect research

Some scientists worry the startling claim will lead to knee-jerk regulations and damage the public’s trust in gene editing.

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Coloured light micrograph of a human embryo

Credit: Zephyr/Science Photo Library

A day after news broke of a Chinese scientist who claims to have helped make the world’s first genome-edited babies, researchers fear the startling announcement will hinder their efforts to safely translate gene-editing technology into treatments.

As scientists gathered for the Second International Summit on Human Genome Editing in Hong Kong on Tuesday, conversation constantly turned to He Jiankui’s claim — which is yet to be independently verified — that he had impregnated a woman with embryos that had been modified to make them resistant to HIV infection. The woman gave birth to healthy twin girls this month, said He, a genome-editing researcher at the Southern University of Science and Technology of China in Shenzhen, in a video posted to YouTube.

The claim prompted shock and outrage from scientists, who questioned He’s justification for carrying out a preliminary and potentially risky procedure in people, without an international scientific consensus about whether and how such an experiment should be conducted. Even He’s own university distanced itself from the results. Now, scientists are also raising the prospect of a chilling effect on gene editing.

“I'm worried about a knee-jerk reaction that might cause countries still working on regulations to make it unnecessarily hard to do this research,” says Robin Lovell-Badge, a developmental biologist at the Francis Crick Institute in London, who is attending the summit that runs from 27 to 29 November.

Jin-Soo Kim, a molecular biologist at Seoul National University and meeting attendee, has been trying to persuade the South Korean government to relax its strict regulations on embryo research. The country does not allow research on embryos, including the use of gene-editing tools such as CRISPR–Cas9 to alter them. Now Kim is worried that He’s claims will lead to more restrictions in South Korea.

Chinese concerns

Such concerns are particularly acute in China, where scientists are sensitive to the country’s reputation as the Wild West of biomedical research. The Genetics Society of China and the Chinese Society for Stem Cell Research issued a joint statement on 27 November saying: “We strongly condemn it for the extreme irresponsibility, both scientifically and ethically.”

The groups’ statement also distanced He’s work from mainstream science in China. “The experiment conducted by He’s group is an individual behavior,” it said. They also call for government investigations.

On 26 November, the Chinese national health commission ordered the Guangdong health commission, where He’s university is located, to investigate. The government of Shenzhen has also announced an investigation into the ethics approval that is claimed in the trial notification posted online.

Rosario Isasi, a legal scholar at the University of Miami in Florida, says that scientists in China fear the country has picked up an unfair reputation for being lax with its regulation of scientific research. This latest announcement won’t help, says Isasi, who has been working with the Chinese Academy of Sciences as an international fellow. “For the Chinese this is hurtful and they are tired,” she says. In 2015, a research group in China fired up debate around using gene editing in human embryos by publishing the first such use of the technology, although in that case the embryos were not implanted.

Paula Cannon, who studies HIV at the University of Southern California in Los Angeles, says the news could also worsen the stigma of having HIV. He’s procedure, in her opinion, casts being HIV positive as a condition that is so awful that people need to be genetically modified to overcome merely being susceptible to infection, she says. “The damage he’s done to the field of gene editing, to HIV-positive individuals and their allies, to Chinese scientists. It’s just horrible,” she says.

Evidence needed

Other researchers think it is too early to say whether a backlash will affect support for genome-editing research and are eager to hear what He has to say at the genome-editing meeting, where he is scheduled to give a talk on the 28 November.

“The researchers here will be circumspect. They will watch reaction — there’s been a lot of negative reaction. A lot will depend on what we learn from He Jiankui,” says meeting attendee Dana Carroll, a biochemist at the University of Utah in Salt Lake City.

Scientists at the meeting have many questions for He. Above all they want to see evidence of his claims, including sequencing data from the parents and the twins to show that genome edits were made. They also want evidence that there were no dangerous off-target mutations and information to determine whether either of the girls is genetically mosaic — a condition in which populations of cells within an individual have different genomes.

He will also have to explain whether he had proper ethical approval for the work. The fact that He has made little data available so far, with his announcement confined to YouTube videos, has frustrated scientists.

When asked what data she hopes to see presented, Jennifer Doudna, a biochemist at the University of California, Berkeley, and pioneer of CRISPR–Cas9, says: “Anything!”

Damaging claims

Doudna worries that CRISPR could become associated with He’s claims, which could be damaging if the babies turn out not to be healthy.

But she thinks that there will remain public support for gene editing of embryos for reproductive purposes. Surveys have shown there are a lot of people open to human germline editing, she says.

The revelations about gene-edited babies have forced Doudna and other scientists to contemplate the need for a detailed set of criteria for responsible germline editing, which involves embryos, sperm and eggs. Those criteria need to include what level of uncertainty in the editing process is permissible for continuing with a procedure, she says. “There’s a potentially positive outcome,” she says.

The meeting, which is sponsored by the Academy of Sciences of Hong Kong, the Royal Society in London, the US National Academy of Sciences and the US National Academy of Medicine, released a non-committal statement on He’s work on 26 November. “We hope that the dialogue at our summit further advances the world’s understanding of the issues surrounding human genome editing,” says the statement. “Our goal is to help ensure that humangenome editing research be pursued responsibly, for the benefit of all society.” The statement also notes He’s talk on 28 November.

doi: 10.1038/d41586-018-07559-8
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