As the world reels from the revelation that the first gene-edited humans may have been born in China this month, questions swirl around the ethics and transparency of the experiment.
It has emerged that the scientist at the center of the controversy, He Jiankui, used an AIDS support network to recruit couples experiencing fertility issues for his experiment. Under Chinese law, people with “sexual diseases,” including HIV, are banned from undergoing in vitro fertilization treatment.
According to the founder of the network, who spoke to financial news outlet Caixin, the trial was advertised as both a fertility fix and a way to prevent children with HIV-positive fathers from being born with the infection — despite the increasingly small chance of HIV being passed from father to child under normal circumstances. Twin girls Lulu and Nana were born earlier this month after a Chinese-led team experimented on their DNA in an attempt to make them resistant to HIV, according to reports. The father of the babies is HIV-positive.
Since the experiment was made public on Monday, it has been embroiled in scandal. A university and hospital linked to it have denied involvement, and near-unanimous disapproval has come from researchers around the world. This includes China, where more than 120 scientists signed an open letter condemning the experiment.
Nevertheless, Caixin revealed that the trial was able to recruit 200 families who were eager to participate through Beijing-based AIDS support network BHL China League. The director of the organization, who uses the pseudonym Bai Hua, told Caixin that He reached out to him because Bai’s organization had a specific network connecting couples with reproductive issues in which the man was HIV-positive — the exact subjects He was seeking.
“We were more concerned about whether the infected people had such needs. If they did, they directly negotiated a contract or agreement with the experimenters. We had nothing to do with that,” Bai told Caixin. But it is not clear whether the families were fully informed of the process.
Bai pointed out that most couples in a dire situation like this — both infertile, one partner infected with HIV, but still longing to have children — often have an optimistic approach to new technologies. However, Bai said that he repeatedly expressed concerns about the ethics of the experiment to He. “I said that the ethics committee would never approve it. But he told me there was no problem. He said it would be approved,” Bai told Caixin, adding that while he was unfamiliar with the review process and framework of ethics, he was sure such technologies were restricted by ethical reviews in Beijing.
Furthermore, Bai’s understanding of the experiment was that its purpose was to help HIV-positive, infertile couples undergo assisted reproduction, but that He added gene-editing technology to it. “He said it is not exactly the same as test-tube babies,” Bai said.
Bai said that after the information was released, many couples expressed interest in the project, and 200 families were recruited. Bai said he believes that after screening for other conditions, 20 couples agreed to participate, which eventually dropped to eight.
“I didn’t participate in the later stages of the project, so I don’t know anything about it,” he said. “It was only when I contacted them this year that I learned about some of the process and that one of the couples was pregnant.”
This is an original article written by Ma Danmeng, Di Ning, Ding Jie, Mao Kexin, and Ren Qiuyu of Caixin Global, and has been republished with permission. The article can be found on Caixin’s website here.
(Header image: Scientist He Jiankui participates at the Second International Summit on Human Genome Editing in Hong Kong, Wednesday, Nov. 28, 2018. Anthony Kwan/Bloomberg/VCG)