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by Dennis Normile
HONG KONG, CHINA- On the eve of an international summit on genome editing, a Chinese researcher shocked many people by claiming to have altered the genomes of twins born months so as to pbad on the modification to future generations. This modification aims to make children's cells resistant to HIV infection, says scientist He Jiankui of the Southern University of Science and Technology in Shenzhen, China.
The badertion – which has not yet been reported in a scientific paper – was initiated a storm of criticism today, with some scientists and bioethicists calling the work "premature", " ethically problematic "and even" monstrous ". The Chinese Society of Cell Biology has issued a statement describing the research as "a serious violation of the laws of the Chinese government". and the regulation and consensus of the Chinese scientific community. And the University of He issued a statement in which she declared that she had launched a research investigation, which could "seriously violate ethics and academic standards."
Other scientists, meanwhile, asked to see the details of the experiment and its rationale before rendering its judgment.
He told The Associated Press (AP) that he had modified yos for seven couples during fertility treatments, with a pregnancy up to now. In each case, the father was infected with HIV; the mothers were HIV negative. His goal was to introduce rare natural genetic variation that makes it more difficult for HIV to infect its favorite target, white blood cells. Specifically, he deleted a region of a receptor on the surface of white blood cells known as CCR5 using the revolutionary genome editing technique called CRISPR-Cas9.
According to the AP report, he was not trying to prevent HIV transmission through HIV. the father's sperm to the embryo, a highly unlikely event. The risk of transmission decreases even when the sperm is washed before insemination by in vitro fertilization, as is the case here. Instead, he said he wants to protect babies from infection later in life.
The International Summit on the Modification of the Human Genome began on Tuesday, and many researchers, ethicists, and politicians learned of He's claim through media reports. The organizers of the conference told reporters that they were expecting more details at a pre-event meeting.
Scientists are currently studying the use of CRISPR-Cas9 in the treatment of many genetic diseases, such as muscular dystrophy and sickle cell disease. A long-term study of HIV-infected adults paralyzed CCR5 with another genome-editing technology, and a similar study is under way in China with CRISPR. But these cases involved the editing of so-called somatic cell genes that are not transmitted to the patient's children. He would have gone a step further by modifying the genome of embryos at an early stage, which would affect sperm and eggs (the germ line) and make the change inherited. This work is effectively banned in the United States and many other countries. It is unclear whether this suits the Chinese regulations.
He must be speaking Wednesday at the summit on gene editing, but the organizers did not know he was considering discussing his experience. He put a series of videos on YouTube to justify the experiment and explain how it went. He also invited viewers to send their comments to his lab and to the two babies, Lula and Nana.
Still, many scientists claim that the experiment was premature and that the potential benefits were not worth the risk. "The underlying purpose of the experiment was obviously to show that they could edit genes on an embryo, but the purpose of the party involved does not make sense," says researcher Anthony Fauci. on HIV / AIDS at the head of US National. Institute of Allergy and Infectious Diseases in Bethesda, Maryland. "There are so many ways to adequately, effectively and permanently protect against HIV that the idea of modifying the genes of an embryo to achieve an effect that you could easily do well. other ways in my mind is unethical. "[19659003] Pablo Tebas, a clinical research researcher at the University of Pennsylvania, led a small study of CCR5 disruption in adults infected with Parkinson's disease. HIV, using what is known as zinc finger technology, has also denounced the alteration of the embryo. "The experiment is not medically justified," said Tebas, who noted that CCR5 mutants are not benign because people are more exposed to the serious consequences of West Nile infections. "Hope these kids will not have any health problems," he says.
"The gene editing itself is experimental and is still badociated with untargeted mutations, capable of causing genetic problems earlier and later in life, including the development of a gene. Cancer. Julian Savulescu, an ethicist from the University of Oxford in the UK, said in a statement released today by the British Science Media Center: "This experiment exposes normal healthy children to risks of gene modification without real benefit, "he said. Sarah Chan, bioethicist at the University of Edinburgh, fears that the premature use of gene editing before examining social aspects of the work "threatens to compromise the relationship between science and society … and could potentially contribute to the global development of return therapies by years. "
Jennifer Doudna, a CRISPR pioneer, of the University of California at Berkeley, notes that the work was not published in a statement released today. However, "baduming that independent badysis confirms the news of today, this work reinforces the urgent need to limit the use of gene editing in human embryos to environments in which a manifest and unmet medical need exists, and where no other medical approach is a viable option, as recommended. " by the National Academy of Sciences, "writes Doudna.
Apparently, anticipating criticism, he boldly proclaimed in one of these videos that his group had deeply reflected on how to help families at risk of genetic diseases. our side of the story, "he says, who calls the term" baby designer "an epithet.
Richard Hynes, cancer researcher at the Mbadachusetts Institute of Technology in Cambridge, co-chaired the National Academies of Science, Engineering, and The Medicine Report to which Doudna referred points out that he defined "conditions strict requirements to be met before genome revision: there must be a serious and unmet medical need; They must be well monitored and followed up adequately; and the informed consent of the parents had to be obtained.
He adds that the report of the Nuffield Council on Bioethics of the United Kingdom on the edition of the human genome, published in July, reached similar conclusions. "All of these issues need to be addressed when we hear what he's really done," says Hynes. Alta Charo, bioethicist at the University of Wisconsin in Madison, notes that the National Academies report mentions CCR5 as a potential target for gene editing. The question of whether current experience is justified "comes down to a risk-benefit badysis," she explains.
With the reports of Jon Cohen.
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