At an international gene-editing conference on Wednesday, the Chinese scientist who claims to have produced the world’s first HIV-resistant gene-edited babies said that his research is aimed at helping millions of children who are at risk of contracting the virus.

Speaking at the Second International Summit on Human Genome Editing in Hong Kong, He Jiankui described the theory and methodology behind an experiment that produced babies with the ability to resist HIV infection thanks to a disabled CCR5 gene — the genetic locus that enables the virus to take hold. He claims to have used the cut-and-paste gene-editing technology CRISPR to get rid of the CCR5 gene.

“For this specific case, I feel proud. I feel proudest, because [the baby girls’ parents] had lost hope for life,” he said. “But with this protection, [the father] sent a message saying he will work hard, earn money, and take care of his two daughters and his wife for this life.”

He’s remarks come two days after The Associated Press reported on his experiment, which has since drawn both support and condemnation from the international scientific community. Many experts who attended Wednesday’s panel discussion grilled He about the ethical issues inherent in creating genetically engineered humans.

Ethical Concerns

David Baltimore, the chair of the summit’s organizing committee, said He’s research has not been a “transparent process,” given that the scientific community had been left in the dark and didn’t find out about the experiment until Monday’s news reports. “I personally don’t think it was medically necessary,” said Baltimore, a Nobel laureate. “I think there has been a failure of self-regulation by the scientific community because of the lack of transparency.”

But He maintains that he had been engaging with the scientific community and consulting with experts — including scientists and ethicists from Harvard and Stanford universities — before and during the clinical trials. He also said that the seven couples, each with one HIV-positive partner, who provided eggs and sperm for the experiment were thoroughly informed about the scientific process, including the risks involved. The embryo that produced the twin girls, Lulu and Nana, is the project’s only successful pregnancy so far, and according to He, all other clinical trials have been put on hold amid the wave of controversy. While the couples received free medical care, they were not paid for participating in the experiment, He said.

Some scientists, including Harvard’s George Church, have supported He’s experiment. The renowned geneticist told The Associated Press that the experiment was “justifiable.” And in a separate interview with STAT, an American media outlet focused on health and science, Church said that considering the data he’s seen from He’s team, their claim of having produced the first HIV-resistant offspring through genetic engineering seems “pretty accurate.”

“Is the genie really out of the bottle? Yes,” Church told STAT.

Approval and Funding

According to He’s remarks during Wednesday’s panel discussion, the Southern University of Science and Technology in Shenzhen, where he works as an associate professor of biology, has been paying his salary since he conceived the experiment three years ago. A 23-page consent document on the website of He’s laboratory, which falls under the university’s remit, indicates that the school agreed to allocate 280,000 yuan ($40,000) in funding for each couple that signed up for the experiment.

However, the university distanced itself from He’s research on Monday, claiming it had not been aware of the project — a position He confirmed during his talk on Wednesday. The day before, the university had closed his laboratory, pending the result of an investigation. The school had not responded to Sixth Tone’s request for comment by time of publication.

“Medical care and expense for the patients was paid by myself,” He said, without elaborating on how much the project had cost him altogether. He admitted, though, that some costs had been covered by “startup funding” from the university.

Concerns Over Care

During a high-level meeting on Tuesday, Xu Nanping, the vice minister of China’s Ministry of Science and Technology, said that if He’s claims are confirmed, the babies will be handled according to Chinese law. A 2016 guideline from the National Population and Family Planning Commission states that any biomedical research on human diseases must first be reviewed and approved by ethics authorities.

On Tuesday, 140 Chinese AIDS researchers released a joint statement saying the experiment had “ignored a scientific and ethical boundary.” They also said that eliminating the CCR5 gene — the crux of He’s experiment — cannot completely rule out the possibility of the babies contracting HIV. A day earlier, 122 Chinese scientists working at top national and international academic institutions called the experiment “crazy.”

HarMoniCare Shenzhen Women’s and Children’s Hospital, a private hospital in Shenzhen that has been linked to He’s experiment, has denied any association with He or his research project. According to The Beijing News, the hospital’s president said on Monday that He’s project had not been conducted on its premises, and that the babies had not been born there. Shenzhen’s top health authority is nonetheless investigating the hospital’s possible involvement.

Despite the ongoing backlash, the man at the center of the storm says he stands by his experiment, which he argues is only intended to help people. As for where the science goes from here, He says, that’s entirely “up to society.”

Contributions: Fan Liya; editor: Bibek Bhandari.

(Header image: He Jiankui gives a talk at the Second International Summit on Human Genome Editing in Hong Kong, Nov. 28, 2018. VCG)