Why genetically edited babies have aroused a worldwide fury

It was after the Chinese researcher He Jiankui revealed that he had used the technique to alter human embryos. Infobae spoke with international experts who object to this type of experimentation. Some propose that the UN should ban the technique, but others believe that regulation would be more effective

A serious researcher knows that he must follow guidelines for experimentation with human beings. You must report truthfully to volunteers who participate in clinical trials, and then you must submit your findings to the review of other scientists. The scientist He Jiankui, born in the south of China in 1984 and the son of peasants, ignored these steps, and if that was not enough, he says that he had altered embryos and produced the first babies by genetic editing. Instead of publishing in refereed journals, Dr. He posted videos on YouTube to claim that Lulu and Nana are “cute little twins” and “as healthy as any baby.”

His announcement sparked a worldwide fury, and now there are experts – who spoke with Infobae – who advise that the use of genetic editing be regulated, and others that directly demand its prohibition on the United Nations.

He Jiankui, the Chinese doctor of controversy

The genetic edition allows to “cut and paste” the DNA without adding genes from other species. One of the techniques of genetic editing is called CRISPR and since 2013 it is developed to benefit patients, pets, agricultural producers. Another purpose has been the design of babies free of a disease , a goal that has been questioned by the scientific community because of the possibility that the modification of the embryos produces undesirable effects that could cause health problems even in descendants.

In December 2015, during the first world summit on the subject in Washington DC, the United States, the risks of the embryo application were analyzed and it was concluded that it would be “irresponsible” to proceed to use the genetic edition until it was shown to be safe and effective. However, He Jiankui would have done it, and says he was “proud” of having collaborated with the birth of the first babies by genetic editing.

After publishing the videos on YouTube, the Chinese scientist spoke at the second world summit of genetic editing, which took place between 27 and 29 November last in Hong Kong, organized by the Hong Kong Academy of Sciences, the academies of Science and Medicine of the United States and the Royal Society of England. He -who returned to his native country in 2012 as part of the Mil talents program, and founded two startups related to genetic testing- justified his questioned experiment by saying that he had used genetic editing to prevent infection with the AIDS virus.

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In his experimentation, seven heterosexual couples would have participated. In each case, men are people living with HIV. One of those couples would have had the twins Lulu and Nana, and there would be a pregnancy on the way to another of the couples, according to what he told during his presentation at the summit in Hong Kong.

Last Thursday, China’s Ministry of Science and Technology announced that it had suspended Dr. He for “blatantly violating” norms. Although the country does not have a specific law for genetic publishing, since 2003 a rule that only allows the use of viable embryos until the 14th day in scientific experiments has been in force . The decision was made after 122 Chinese scientists pronounced themselves in a joint statement against what Dr. He would have done, and after a hail of criticism at the global level.

Interviewed at a distance by Infobae , one of the members of the organizing committee of the second world summit, R. Alta Charo , professor of law at the University of Wisconsin, United States, and specialist in reproductive health and bioethics, told: “I heard the doctor I can and I can conclude that the use of genetic editing in embryos was wrong, premature, and largely useless. ”

And he developed: “The babies were practically not at risk of acquiring the AIDS virus, because it was their father – and not the mother – who was infected.” The participants were given a consent form that falsely stated that it was a vaccine trial. for AIDS, and that research was merged with therapy because it would have a likely benefit. Indeed, not only is there little chance that those babies need a benefit because of their low risk, but there is no way to evaluate whether the experiment conferred any If they continue HIV-negative, there is no way to show that it had to do with genetic editing. ” In addition, Dr. Charo commented that He said there are more embryos from other couples, all frozen, and that he stopped working. ”

“What the researcher He Jiankui did is an atrocity,” said Federico Pereyra Bonnet, who leads a group of the Conicet that studies the genetic edition as a way to treat patients with diabetes in the University Institute of the Italian Hospital of Buenos Aires. “We were progressing with the genetic edition step by step, the scientific community understood that the technique has the potential to have a positive impact on human health, but we still need to understand how it works, whether it is safe and effective. He did, experiments were conducted directly on humans and the controls were skipped. Nobody knows the consequences of experimentation, since its effects have never been tested in animal models, they could trigger an autoimmune reaction today or within a few years. ”

Attempts to modify genes or cells in embryos have already aroused controversy in the past. In the nineties, they had begun to develop genetic therapies, through different techniques, and there was a consensus that should not be applied in the germ line to avoid unexpected consequences not only in the individuals who received them but in the human species. “Germline cell gene editing produces changes in DNA that can be inherited by later generations, which is why the therapeutic use of the germline modification has not been approved in any country,” he told Infobae. Fabiana Arzuaga, coordinator of the Inter-ministerial Commission of Advanced Therapies, of the Government Secretariat of Science, Technology and Productive Innovation and member of the Association for Responsible Research and Innovation in Genetic Editing.

Dr. He revived the debate about what the world should do from now on. For Jaydee Janson of the International Center for Technology Assessment in Washington, DC, the United States, who was attending the summit in Hong Kong, we should not let the scientific community decide on its own and the international ban is imposed .

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Asked by Infobae , Janson recalled: “In 2015, from the coalition that we formed with other organizations, we strongly believed the scientists’ promise that self-regulation would prevent the use of genetic engineering in embryos and germline cells. This week’s conference made it clear that the purpose was to lay the foundation for embryo genetic engineering. The failure of the Summit leadership to categorically denounce He’s work is tragic. Only the Chinese government has said that this should not happen ” .

Janson emphasized: “We are calling for a mandatory and international moratorium, since we believe that if it is not done in this way, there will be countries that will allow babies to be born by genetic editing.” If a global agreement is not made, an edited baby tourism will be generated. genetically, as it happened with embryonic stem cell laboratories that were a bait for people, Dr. He does not understand that he has a lifelong obligation to make the babies he produced stay healthy, we do not want a proliferation of those charlatan doctors. The leaders of the summit in Hong Kong called for an independent review of Dr. He’s work, but it is not said who and how it should be done, and these questions must be answered through an international treaty.

In contrast, Dr. Charo opined differently. He fears that the announcement of twins produced by genetic editing will affect the rigorous work of many scientists. ” It is important that the unfortunate work of the scientist He does not become an obstacle to the ongoing development responsible for genetic editing , which is already in clinical trials with somatic cells.” The genetic edition of heritable germline is far from ready For human trials, a translational pathway would include standards for prediction, identification, and evaluation of unwanted effects as well as desired effects. After all, this is done, the use of genetic editing should be limited to situations in which Reasonable alternatives were not available. ”

Regarding the claim to ban the genetic edition, Charo said: ” I am afraid that the facts in China will lead to many calls for complete prohibitions, but they are neither necessary nor wise. Governance is an ecosystem, and there is a role for funders (who should insist on compliance with the local norm, on the submission to the protocol by peer review and on the transparency of the data), of the insurers (who should condition the coverage of institutions to a commitment to education and supervision of their teaching staff), for professional accreditation bodies (which should move quickly to discipline those who violate legal or ethical requirements). If that were coupled with strict regulatory controls at the governmental level, the development and possible uses of the germline edition can be managed. ”

Charo explained why he does not want the total restriction. “Prohibitions simply deprive government authorities and the public of the opportunity to direct the development and ethical use of technology.” No system can absolutely guarantee that there will never again be a rogue scientist who attempts genetic germline editing without a job. clinically appropriate and supervised, but that is more likely to happen with the prohibition than with regulations. “