Meet the Chinese researcher behind the "world's first baby designers" | Should know

Ruth, Tommy and Kathy are closely watched by the "guardians" of their boarding school, Hailsham, in the English countryside. Hailsham is definitely … a strange place. Throughout the book, readers have the impression that the characters and the world they live in are not quite real. One day, a tutor reveals to the students that they are clones, created for organ donations. After their gifts, the fate of the children is sealed: they will die.

Genetic publishing, subject of Kazuo Ishiguro's dystopian novel in 2005 Never let Me Go, has captured the imagination – and fear – of humans for decades. Why is this idea doubly captivating and terrifying? Perhaps because this science always seems about to be possible, but slightly out of reach.

This week, it was becoming a little more real as Chinese researcher He Jiankui claimed to have used the CRISPR gene editing tool to create the world's first genetically modified babies. He said he had modified the embryos of seven couples (men were HIV-positive) during in vitro fertilization (IVF). This led to a pregnancy and the birth of binoculars bearing the pseudonyms of Lulu and Nana.

Gene surgery is another advancement of IVF and is only intended to help a small number of families.

He jiankui

It was not trying to cure an existing disease, but rather to remove the way in which HIV enters by asking CRISPR-Cas9 to disable a gene called CCR.₅. His goal? HIV-resistant babies, a trait that less than 1% of people would have.

He is 34 years old and has two daughters. He studied at Stanford University and Rice University before returning to China, where he runs two genetics companies and a laboratory at the Southern University of Science and Technology (SUSTech). in Shenzhen. His recent work has broken with scientific protocol and ethical standards, both in terms of method and dissemination. Since the research was not published in a peer-reviewed journal, his claims that the edition was successful (and no other genes were damaged) are not verified. Unconventionally, he made the announcement at an international conference on gene editing and interviews with the Associated Press. Explaining his motives in a YouTube video, he spoke of the discrimination that HIV-positive people still face in China and many developing countries. "Gene surgery is and should remain a healing technology," he explains in the video, in English, with lab equipment tucked behind him. "I understand that my work will be controversial, but I believe that families need this technology and I am ready to accept the criticism that is made of it."

This decision provoked a wave of violent reactions and concerns in the scientific community. The use of CRISPR to modify sperm, ova or embryos is prohibited in the United States (in addition to laboratory research), but it is allowed in China. With this technology, we may change other genes that should not be modified. When CRISPR is used to treat deadly diseases in the adult, these changes are limited to the individual. But when it comes to embryos, these changes can be inherited from future generations. Even though the process is going well, people with RCC deficiency₅ are more susceptible to diseases such as West Nile virus and Japanese encephalitis. Some scientists also claimed that the writing of his book was not complete. "Changing human embryos at this stage of our understanding of biology is clearly unethical," says Christopher Anderson, professor of bioengineering at the University of Berkeley. "We do not yet understand all the biological consequences of these actions, even in small animals."

Critics such as Sandip Patel of the University of California at San Diego were legion on social media.

The analogy with the mirror would be that if you and I, doctors, develop a cold fusion reactor in a country without brownouts without having ever designed the nuclear reactor, switched the switch without a safety check or even checking if produced power, posted vid on instagram

– Sandip Patel MD (@PatelOncology) November 26, 2018

Meanwhile, Harvard University geneticist George Church has called HIV "a major and growing threat to public health," telling the Associated Press that he had changed the gene: "I think that this is justifiable ".

He took a break from teaching this year, but is still a faculty member at SUSTech and operates a lab there. The university says she was not aware of her research and was investigating it. He also announced this research in a register of Chinese clinical trials in early November. In addition, the team's informed consent document described the work as an "AIDS vaccine development project" and used technical language, asking whether participants fully understood what they were agreeing to. .

Many fear that the edition of human embryos creates a slippery slope towards eugenics. If society considers gene editing as vaccines, could all embryos be modified to prevent as many diseases as possible? Is susceptibility itself a disease? And when does this logic stop? "This is likely to create a new genetically modified elite … that can not get sick but passes it on to other people," Eben Kirksey, professor of anthropology at Deakin University, told The Guardian.

Nevertheless, human health has substantial benefits. CRISPR could slow down the aging process and help humans avoid problems such as obesity and Alzheimer's disease. And while the concept of embryo editing is wrinkling the feathers, social norms relating to fertility are constantly changing. IVF was considered controversial when it first appeared in 1978. The birth of the first "baby on probation," Louise Joy Brown, was controversial, but an estimated 8 million babies were born from in vitro fertilization or advanced fertility treatments since. "Genetic surgery is another advancement of IVF and is only intended to help a small number of families," he says in the video.

The most disturbing to his many detractors is the way he has violated the scientific guarantees accepted around the world. "I hoped that the whole research would adhere to the informal moratorium on modifying embryos for reproductive purposes and I am deeply disappointed to see a scientist claiming to have progressed anyway," wrote Rachel Haurwitz, CEO of Caribou Biosciences.

He broke these standards in pursuit of what he considers a just cause. In forty years, will he be considered a pioneer or an outcast?

Learn more about using CRISPR to modify crops and new drugs to stop age-related diseases on OZY.