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A Chinese scientist claims that he created the first gene-modified babies in the world is a "deeply disturbing" and "irresponsible" violation of international scientific standards, according to a formal conclusion issued Thursday by the organizers of the Second International Summit on HIV / AIDS. modification of the human genome in Hong Kong. Kong.
The scientist He Jiankui's surprise and unconfirmed claims earlier this week that he would have changed the twin genes born last month rocked the summit.
He, from the South Shenzhen University of Science and Technology, China, claims to have modified twins' embryos with the CRISPR gene modification technique so that they are immune to the AIDS virus . His claims remain unproven.
Nevertheless, hundreds of scientists from dozens of countries were fascinated by his statements at the three-day summit organized by the Hong Kong Academy of Sciences, the Royal Society of London, the National Academy of Sciences of the United States and the US National Academy of Medicine.
The goal was to reach a global scientific consensus on how scientists could one day use ethically new powerful gene editing techniques such as CRISPR to edit the human genetic plan.
Kin Cheung / AP
An ethical question
In the summit's closing statement issued Thursday morning, the organizers called for an investigation to verify or refute He's claims. But no matter whether it is true or not, the organizers said that the researcher's experience was premature, deeply imperfect and unethical.
"His defects include inadequate medical indication, a poorly designed study protocol, a failure to comply with ethical standards for the protection of the well-being of research subjects and a lack of transparency in the development, the review and conduct of clinical procedures, "said David Baltimore, who chaired the summit, reads the final declaration of the summit.
The organizers concluded that much more research was needed before trying to prevent diseases by altering human embryos.
"Making changes in the DNA of embryos … could allow parents with disease-causing mutations to have healthy and genetically related children," Baltimore said. "However, changing the hereditary genome of … embryos … poses risks that remain difficult to evaluate."
According to the statement, however, since the last summit in 2015, enough scientific progress has been made to begin to chart the way forward. It could be done someday.
"The progress made over the last three years and the ongoing summit discussions … suggest that it is time to define a rigorous and responsible path … towards such trials," said Baltimore, an American biologist awarded the Nobel Prize.
In doing so, the organizers rejected requests for moratorium on such research.
Baltimore said that a ban would be counterproductive and would unnecessarily hinder the advancement of science. R. Alta Charo, a bioethicist from the University of Wisconsin who helped organize the summit, argued that the fact that a scientist has violated the scientific standard does not necessarily mean that the system is defective.
Concerns and possible benefits
Changes in the DNA of human embryos have long been considered taboo because of security concerns and fears that this may lead to "baby designers" – children whose traits are chosen to become supposedly genetically superior.
But many scientists are now convinced that it might be ethical one day to alter human embryos to prevent genetic diseases such as Huntington's disease, cystic fibrosis, muscular dystrophy and hemophilia. And several scientists have already developed human embryos in their labs to try to determine the safety and effectiveness of the procedure.
Most scientists and bioethicists agree that it is way too early to try to make babies from modified human embryos, mainly because the safety protocols of the technique remain blurred.
DNA modification can inadvertently cause genetic mutations that can affect the health of any newborn babies and cause new health problems that could be passed on from generation to generation.
Some oppose all efforts to create genetically modified babies, stating that it will be extremely difficult to make a clear distinction between medical uses and attempts to create genetically improved individuals. And this could lead to a world of wealthy and disadvantaged genetics.
Although gene editing experiments on human embryos are banned in many countries, they have not been banned in many others. And scientists have long supported self-regulation to prevent new technologies from being misused.
The summit declaration was launched as governments around the world increasingly called for enforceable moratoria for all future experiments. While such experiments are prohibited in some countries, the forensic science has relied heavily on scientists to follow the guidelines.
At the opening of the summit, Feng Zhang, an MIT scientist who helped develop CRISPR, immediately called for a moratorium on such experiments.
"Given the current state of genome editing technology, I am in favor of a moratorium on the implantation of published embryos … until the end of the year." what we first established is a thoughtful set of security requirements, "Zhang wrote in a statement.
As the last day of the summit began, more than 100 activists, bioethicists, scientists and others issued a joint statement calling on the summit to call on governments and the United Nations to adopt a moratorium.
"If the organizers of this week's summit in Hong Kong want to show that science is not out of control and deserves the trust of the public, now is the time for them and the rest of the international scientific community to take action. communicated. .
He noted that when he had defended his experience at the summit, he had justified his experience in part by a 2017 report of the National Academies of Science. The report concluded that clinical trials "could be allowed" after laboratory studies have shown that the treatment would be safe and only for "compelling medical reasons, in the absence of reasonable alternatives".
This sentiment was echoed by the Center for Genetics and Society, based in Berkeley, California, who accused the organizers of the summit of "complicity" in fraudulent research, claiming that the recommendations of the National Academies and the Bioethics Council of Nuttfield had been interpreted "green light" by He.
In their closing statement, the organizers of the summit "almost flatly declared that nothing would bother them: not laws in dozens of countries or an international treaty, not widespread opposition from the public and civil society, not a deep concern of their own scientific community, and not a great researcher, "said the CGS in a statement.
David King of Human Genetics Alert, spoke about the specter of "[the] horrible history of eugenics in the twentieth century "and warned of the" dire consequences of this path ".
"He should act immediately to ban such experiments and ensure that He Jiankui is prosecuted as a warning to others," King said in a statement.