Researchers from the University of Science and Technology of the South, in Shenzhen (China), have claimed to have created the first genetically modified babies, thanks to the CRISPR editing technique, getting them to be free of the CCR5 gene of the HIV immune gene in human embryos.
The research, which was collected by the magazine 'MIT Technology Review' and whose goal was to get babies to be resistant to HIV, smallpox and cholera, He obtained approval from an ethical committee last year, however the Chinese institution has just opened an investigation by stating that he did not know what happened.
The leader of the investigation, Dr. He Jiankui, confirmed, after hearing the news, having edited the genes of the twins Lulu and Nana, born at the beginning of this month, as explained by the geneticist in five videos published on YouTube, where he defends the ethics of his work. "I understand that my work will be controversial, but I believe that families need this technology and I am willing to accept criticism for them," he says in one of them.
The editing process, which he calls genetic surgery, "worked as safely as planned" and the girls are "as healthy as any other baby", says in another of the videos. The truth is that until now this technique has only been used, and already with enough controversy, to edit the genes of non-viable human embryos.
In a previous email to Reuters, Jiankui planned to share data about the trial in a scientific forum this week. His intention was for this study to go through "the process of peer review, and soon through a pre-print." A preprint is a publication of the results made before the research is published in a peer-reviewed journal.
For their approval, the researchers defended that "HIV is an important medical problem that threatens all human beings in today's world., affecting the safety and health of all human beings"After recalling that, to date, there is no effective treatment or clinical technique to completely cure AIDS, and that it is far from reaching the HIV prevention objectives of the World Health Organization (WHO), defend the use of new tools for its eradication.
The clinical trial was initially based on preclinical research of cell lines, animal models and human waste embryos. He recruited patients HIV positive with infertility and informed the volunteers – who were at least 20 – about the risks and benefits through a sufficient informed consent. The study design was presented to the hospital ethics committee for discussion and approval.
The recruited patients were married couples of the People's Republic of China with HIV seropositivity, from 22 to 38 years of age; in the case of men they should be stable and not detect a viral load of less than 75 copies / ml and CD4 counts greater than 250, at least in the last 12 months with a history of continuous antiretroviral therapy.
As reported by 'MIT Technology Review', He Jiankuise's research was unknown pending its presentation at the international conference on gene editing that begins this Tuesday, also remember that it is impossible to verify the claims as it did not provide any written documentation of your investigation.
In a previous telephone interview and emails with Reuters, the researcher claimed that his goal was to give the edited babies the "protection for life" against HIV. He said he began his work in the second half of 2017 and enrolled eight couples. All potential parents involved were HIV-positive. Five chose to implant embryos, including the parents of the twins, identified only by the pseudonyms of Mark and Grace.
CRISPR-Cas9 is a technology that allows cutting and pasting DNA, generating genetic solutions to fight the disease. However, there is great concern in the scientific world about its safety and ethics.
"If it's true, this experiment is monstrous", said Julian Savulescu, director of the Oxford Uehiro Practice Ethics Center at the University of Oxford. "These healthy babies are being used as genetic guinea pigs, this is Russian genetic roulette," he added.
An investigation has been opened
A Chinese university has reported that will launch an "immediate" investigation. The University of Science and Technology of the South in the city of Shenzhen, in the south of China, said that it had not had knowledge of the research project and that the academic was without salary from February.
The work is a "Serious violation of ethics and academic standards", they have indicated, while they have notified that an independent committee of experts will be formed to investigate.
"The University of Science and Technology of the South strictly requires that scientific research conform to national laws and regulations and that it respects and complies with international academic standards and ethics," they said.