A Chinese scientist who claims that the two girls had transformed twin girls before giving birth – without the usual scientific channels – said that he was proud of his work and claimed that another woman who participated in his trial was in a condition with a similarly modified child.
Scientist He Jianquan said on Wednesday at hundreds of colleagues and journalists at the International Human Genome Editing Summit in Hong Kong.
He said that the first birth date from a trial using gene transcription technology known as Crispr-Cas9 was presented in a scientific journal, which he did not show. He also does not say that the results will be published.
In a scheduled presentation, He, associate professor at Southern Science and Technology University in Shenzhen, described how he used Crispr-Cas9 to transform a gene called CCR5 into multiple embryos created by IVF pairs with HIV positive fathers.
The modification was intended to reflect the natural mutation found in a small percentage of people and make them resistant to the virus. He said that two girls – Nana and Lulu – were born with genetic changes.
A 40-minute researcher's Q & A offered a fee forum for scientists to publicly question the colleagues involved in the dispute.
Nobel Prize winner David Baltimore, organizer of the summit, professor of biology at the California Institute of Technology, said he was irresponsible. "I think that the self-government of the scientific community was not in a position of lack of transparency," Baltimore said.
David Liu, a biologist at the Great Institute in Cambridge, Mass., Challenged him on how girls could benefit from having changed their DNA. Children had no risk of developing HIV after birth, and he said there are many ways to avoid HIV infection later in life. "What was the unmet medical need for these patients, in particular?" Liu asked.
He said in defense: "I really believe that not only in this case but also in millions of children they need this protection because there is no HIV vaccine available. In this case, I feel proud."
Matthew Porteus, Professor of Pediatrics at the University of Stanford University, said: "He already has the risk of becoming a pariah." Scientists have spoken for years before many colleagues about their research plans to get feedback before they are presented. "If he does not engage in the scientific process, it will become worse and worse," Portey added.
At a summit, he presented slides to a group of scientists who expressed concern that he might have damaged his subjects and threatened gene-tracking research.
However, the scientist said he wanted to prevent the HIV from being inherited from his parents, as the virus in China affected so many children. Eight of the couple agreed to participate in the study, although one had quit. Every father had HIV positive until the woman had a virus.
He told the audience that he had worked with 31 eggs and implanted two changed embryos in one woman. One of the children had only one copy of CCR5-edited gene that was not enough to ensure HIV resistance. The health of both children would be monitored over the next 18 years.
The genetic editing work was started three years ago, partly paid by He who advised them, he said with some colleagues about his plans.
In the United Kingdom and in many other countries genetically modified children are banned, and scientists in this area have come to a wide consensus to try to be deeply unethical. Genome editing is not considered safe, and any genetic modification that is beneficial or inadvertently harmful not only affects the child, but also their children and future generations.
"It's impossible to exaggerate how irresponsible, unethical and dangerous," said Kathy Niakan, a scientist at the Francis Crick Institute in London who attended the summit. "There were disturbing disadvantages in monitoring or checking his clinical plans before he began human experimentation and lacked transparency in the entire process.
"I found out that it was very worrying that he avoided questions about approval processes, and he was not satisfied with his responses on recruiting and agreeing to patients. It seems the team did not have enough training on the right consent process. By offering unprotected patients, free IVF treatment brings clear a conflict of interest. "
On Tuesday, it was announced that Chinese officials and his university in Chen are working on his work.
His unclear answers raised more questions from the audience at the summit. Did he know enough about technology to ensure that children are healthy, or would they be able to enter into contracts with other deadly viruses? He stressed that he knew enough.
"How do you see your responsibility for these children?" Asked by Eben Kirksey, Associate Professor of Anthropology at Deakin University, Victoria, Australia. He replied that childcare would be provided, but no information was provided.
Missing information was disturbing the audience. "This is a red line," he said in a conference. "Why did you choose to cross it and act in secret?"
Robin Lovells-Boy, a Geneticist at the Francis Crick Institute in London, claimed that he was wrong. "He clearly made the wrong decisions. I very critically appreciate this scientific breakthrough because he is upset."
Lovell-Badge said that he had been thinking that he had changed the child's DNA, but said that the scientist had to prove that it was proven. The only way to convince the world would be if an independent, qualified laboratory examines the parent and two-child DNA to prove that the genes have been edited. "Nothing I have shown is false, but the evidence I have seen is not yet good enough," he added.