The baby scandal published by a gene is a major problem F – You, members of the scientific community – Mother Jones

September 15 / iStock

Chinese researcher He Jiankui on Sunday released a video on YouTube in which he made a historic statement: The first genetically modified babies were born in China a few weeks ago, "as healthy as other babies", he said. declared. The babies, the twins named Lulu and Nana, were like any other fertilized baby in vitroexcept that their DNA had undergone genetic "surgery" while both were embryos, using a technology called CRISPR-Cas9. He added that the changes were aimed at making babies resistant to HIV.

Although gene editing technologies such as CRISPR have been used to modify DNA in adults and children with genetic disorders, this would be the first time that anyone claims to use a technology. Editing genes to modify the human DNA of a baby brought to term. Many countries, including the United States, have banned this practice, but as journalist Rowan Jacobsen pointed out in an article from Mother Jones Last year, "research continues around the world and the lack of regulation in some countries means that anyone who wants to escape the rules can do it."

"I think it will help families and their children," he told the Associated Press, a researcher at the China University of Science and Technology of China. If it is later discovered that his actions caused undesirable side effects or damage, "I would feel the same pain as they do and that is my own responsibility".

The Internet and the scientific community exploded into scandal in response to his claims. The researchers described this approach as "unconscious" and "very dangerous". China has issued ethical guidelines against the implantation of gene-modified embryos, but books are not prohibited. On Tuesday, the National Health Commission of China announced the opening of an investigation into the allegations, after the hospital in which the research was supposed to have taken place said that this was not safe. 39, was never produced. "We can ensure that the research was not conducted in our hospital and that the babies were not born here," said a hospital representative at CNN. The university said in a statement that the school was not aware of the research and that he had been on leave since early 2018.

To make sense of this busy story, I called Fyodor Urnov, genetic scientist and deputy director of the Altius Institute for Biomedical Sciences, a non-profit biomedical research organization based in Seattle. One of the first researchers to use CRISPR, Urnov is named on more than 130 patents relating to gene editing. We talked about his so-called success – and what it means for science, ethics, and evolution.

Mother Jones: Let's start with the basics. What is CRISPR?

Fyodor Urnov: CRISPR, as a technology, is very broad. It's a way to change the DNA in a cell. Human cells or mouse cells or cow cells were genetically engineered using CRISPR. Basically, it's a small set of molecular scissors that you can program to go inside a cell and find a gene of interest on demand. There have been clinical trials of genetic editing for HIV, cancer, sickle cell anemia and hemophilia. There will soon be clinical trials for blindness, for liver diseases, and so on.

MJ: He Jiankui's claims about genetically modified babies seem to have caught the scientific community and the public by surprise. What was your first reaction when you heard about it?

FU: Today is historic because we came in – I do not know what to call it. Is it a chapter? An age? Or an area? We go there, it's a zone! It is an area in which we deliberately modify our children in a way that will also affect the genetic makeup of their children. So it is historic, but also dark because the primary purpose of gene editing is to treat a disease. What has been done in China, assuming that is the case, has not been done to treat an existing disease. It was designed to protect children who are not born from a hypothetical future HIV infection. This goes directly against all existing regulatory guidelines regarding the editing of human genes, and contradicts them. And so, frankly, I'm disappointed.

More than anything, shock is why? There was no medical need. What is he trying to achieve? There are other ways to get the same result. If he was so concerned about the susceptibility to HIV of these children, well, once they are born, you can simply modify their immune system and modify their immune system so that they are protected of HIV. We know that it can be done. There was no reason to change [the embryos]but that's what he did.

The scientists who work there are, frankly, mortified. We wanted a vigorous, thoughtful and ethical deployment of gene editing and CRISPR for medical disease needs in adults and children, rather than for embryos.

MJ: What's the problem? Will these changes be passed on to the offspring of the twins?

FU: That's true, but I think the most urgent problem is that someone has adopted years of rules and regulations put forward by the medical community that has thought a lot about it, in the United States , in Europe and Asia. There is a moratorium on embryo editing in this way, basically to make sure that we have thought about how to proceed. The question is what other experiments of this type are currently at stake. And who are the laboratories? And for what purpose?

MJ: The first baby CRISPR would be a huge step forward for science. Is it something that researchers are arguing for to be the first to do it?

FU: The embryo edition is such a delicate subject. I think people would hesitate to describe themselves as engaged in an open race, but I suspect that there is probably an undercurrent of competitiveness because it's a pretty technical feat.

What he did not do, which really leaves me puzzled, is that he could have taken this very CRISPR and test it on adults and demonstrate that it was safe. And he did not do it. And the reason I raise the question in the context of your competitiveness question is that it suggests to me some rush to action that I do not understand.

MJ: Do you think gene editing is a human who "plays God", as some call it, or is it simply an extension of evolution – much like the invention of tools or medicines?

FU: Our DNA is not fixed. It changes in response to the world. (For example, people of North European or West African ancestry can drink milk in adulthood, and people of Chinese descent can not, their DNA is different. parts of the world, the cow was domesticated and people began to drink milk, their DNA basically speaking, there is nothing biologically unnatural in the change of human DNA.

I consider that the use of gene editing to treat genetic diseases is a natural continuation of the fact that human DNA has changed since the birth of our species. I do not really see any antagonism between the "natural" and the technically artificial in this case. The genetic disorder is not part of a master plan of evolution that describes how the world should work. Genetic diseases are just one mistake. If Mother Nature had emotions, she would probably be sorry, but she has no emotions. It's just an evolution. The fact that we have these remarkable tools to give us these capabilities is, in my opinion, a reason for celebration – assuming we can use the technology wisely, rather than the kind of things we are seeing in China right now.

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