A Chinese scientist who claims that he changed the DNA of twin girls before birth — without going through the usual scientific channels — said he was proud of his work and claimed that another woman registered in his trial was pregnant with the same modified child.
The scientist, he Jiankui, spoke to hundreds of colleagues and journalists on Wednesday at the international summit on editing the human genome at the University of Hong Kong.
He said that details about the first births from a study that used gene editing technologies, known as Crispr-Cas9, were presented in a scientific journal, which he did not name. He also did not say when the results could be published.
In a planned presentation, he, an associate professor at the Southern University of Science and Technology, in Shenzhen, described how he used Crispr-Cas9 to modify the CCR5 gene in a number of embryos created through IVF for couples with HIV-positive fathers.
The modification was designed to reflect the natural mutation found in a small percentage of people, which makes them resistant to the virus. According to him, two girls named Nana and Lulu were born with genetic changes.
The 40-minute Q & A researcher offered a charged forum for scientists to publicly ask a colleague caught in the controversy.
Nobel laureate David Baltimore, the organizer of the summit, who is an honorary professor of biology at the California Institute of Technology, called his work irresponsible. “I think that due to the lack of transparency, there was a failure of self-regulation on the part of the scientific community,” said Baltimore.
David Liu, a biologist at the Big Institute in Cambridge, Massachusetts, challenged him about how girls can benefit from DNA changes. Children were not at risk of getting HIV at birth, and he said that there are many ways to avoid HIV infection in the future. “What was the unmet medical need for these patients?” Liu asked.
He said in defense: “I truly believe that not only for this case, but also for millions of children, they need this protection, since the HIV vaccine is not available. For this occasion, I am proud. ”
Matthew Portes, a professor of pediatrics at Stanford University, said: "He already risks becoming a pariah." Scientists have talked about their research plans with many colleagues for many years in order to get feedback before they leave. “If he doesn’t get involved in the scientific process, it will get worse and worse,” Portes added.
At the summit, he presented slides to an audience of scientists who expressed concern about the fact that he could harm his subjects and put at risk research on the editing of genes.
However, the scientist said that he wanted to prevent a parent from becoming infected with HIV, because a large number of children were affected in China. Eight couples agreed to participate in the study, although one of them fell out. With each of them, the father was HIV-positive, while the woman had a clear virus.
He told the audience that he worked on 31 eggs, and implanted two altered embryos in one woman. In one of the babies, only one copy of the CCR5 gene was edited, which was not enough to ensure resistance to HIV. The health of both children will be monitored over the next 18 years.
Gene editing work began three years ago, partially paid by He, who consulted, he said, just a few colleagues about their plans.
It is illegal in the UK and many other countries to create genetically modified children, and scientists in this area have reached a broad consensus on what it would be extremely unethical to try. Genome editing is not considered safe, and any genetic modifications, whether beneficial or unintentionally harmful, affect not only the child, but also their children and future generations.
“It’s impossible to overestimate how irresponsible, unethical and dangerous it is now,” said Katie Nyakan, a scientist at the Francis Crick Institute in London, who attended the summit. “There was a lack of control or verification of his clinical plans before he began experimenting with people and full transparency throughout the process.
“I was very worried that he avoided questions about the approval of the processes, and his answers to recruiting and patient consent did not reassure me. It seems that the team did not have enough training on the proper consent processes. Providing free treatment to IVF for vulnerable patients is a clear conflict of interest. ”
On Tuesday, it was announced that his work was being investigated by Chinese officials and his university in Shenzhen.
He vague answers at the summit caused more questions from the audience. Did he know about technology so that children could be healthy or could become infected with other deadly viruses? He insisted that he knew enough.
“How do you see your responsibility to these children?” Asked Eben Kirksi, associate professor of anthropology, at Deakin University in Victoria, Australia. He replied that children's medical care would be provided, but did not provide any details.
Missing information has disappointed many in the audience. “This is the red line,” said one of the conference participants. “Why did you decide to cross it and hold it in secret?”
Robin Lovell-Znak, a geneticist at the Francis Crick Institute, in London, claimed that He was wrong. “He clearly made the wrong decisions. I am very critical of this scientific breakthrough, because it is messed up.
Lovell-Badge said that he was inclined to believe that he had changed the DNA of children, but said that the scientist must prove it. The only way to convince the world is that if an independent, qualified laboratory checks the DNA of the parents and two children, to show that the genes have been edited. “Nothing that was shown to me says that this is wrong. But the evidence that I saw is not good enough, ”he added.