A scientist who fears babies entrusts his own ethics policy

We said "do not panic," when scientists first used Crispr to modify the DNA of non-viable human embryos. When they tried embryos that could theoretically give birth to babies, we answered "Do not panic". Many years of boring science on the bench remain before anyone can even thought to place it near the womb of a woman. Well, we may have been wrong. The permission to press the panic button is granted.

In the night from Sunday to Sunday, a Chinese researcher surprised the world by claiming to have created the first human baby, a set of twins, with DNA published by Crispr. "Two beautiful little Chinese girls, Lulu and Nana, arrived screaming in the world as healthy as the other babies a few weeks ago," said scientist He Jiankui in the first of five promotional videos posted on YouTube. hours later. Review of MIT technology announced the news.

Lulu and Nana would have a genetic mutation, thanks to Crispr, which makes it more difficult for them to invade and infect their white blood cells with HIV. The statement, which has not yet been independently verified or substantiated by published data, has sparked fierce criticism, an international scandal and numerous investigations. The scientific uproar has been so rapid because its so-called secret work has gone beyond the current ethical standards for so-called "germline editing," in which modifications to the DNA of an embryo would be passed on to subsequent generations.

Perhaps the strangest thing is that it is not strange that it ignored the global recommendations on the conduct of responsible research on Crispr in humans. He also ignored his own advice to the world – published guidelines within hours of the publication of his transgression.

On Monday, he and his colleagues at Shenzhen's Southern University of Science and Technology published a set of preliminary ethical principles "to frame, guide, and limit the clinical applications that communities around the world can share and locate based on religious beliefs, culture and public health challenges. These principles included transparency and enforcement only when the risks are offset by serious medical needs.

The piece appeared in the The Crispr newspaper, a young publication devoted to research, commentaries and debates on Crispr. Rodolphe Barrangou, editor of the journal, where the peer-reviewed perspective appeared, said it was one of two recently published articles dealing with ethical issues related to the amendment from the human germ line, the other from a bioethicist from the University of North Carolina. . The authors of both articles had asked for their papers to be published before the big gene editing summit to be held this week in Hong Kong. When rumors about the secret work that he underwent reached Barrangou this weekend, his team discussed the possibility of withdrawing the document, but finally decided that it was not there. was not too strong to discredit him, based on information available at the time.

Now, Barrangou and his team are rethinking that decision. On the one hand, it revealed no conflict of interest, which is a common practice in respectable journals. It has since become clear that not only was he head of several genetics societies in China, but he was actively pursuing controversial human research well before writing a scientific and moral code to guide him. "We are currently assessing whether the omission was a matter of mismanagement or bad intent," said Barrangou, who added that the newspaper is currently conducting an audit to determine whether a retraction is warranted. "It's confusing to see the authors submit an ethical framework in which the work is to be performed, and at the same time do something that directly contravenes at least two of the five stated principles. "

One is transparency. Report by Technical Review and The Associated Press asked the question of whether he had misled trial participants and Chinese regulators in his ambition to make the first baby Crispr'd. Two is the medical necessity.

Take the gene he chose to edit: CCR5. It codes for a receptor that HIV uses to infiltrate white blood cells, as a key to a locked door. No key, no access. Other controversial early Crispr attempts to correct faulty versions of genes responsible for hereditary, often incurable disorders, by bringing them back to the healthy version. In contrast, the group of He is paralyzed Ordinary copies of CCR5 to reduce the risk of future HIV infection, a disease that is easy to prevent, treat, and control in ways that do not require perpetual DNA modification of anyone. Medications, condoms, needle exchange programs are reasonable alternatives.

"These questions raise all sorts of questions, but the most fundamental is the risk / benefit ratio for the babies that will be born," says Hank Greely, ethicist at Stanford University. "And the benefit / risk ratio on this stinks. Any institutional review committee that approved it should be dissolved if it is not jailed. "

Report by stat indicates that he may have just come forward and try to set up a self-guided ethics training in just a few months. The young scientist – his records indicate that he is only 34 years old – has a training in biophysics. He studied in the United States at Rice University and in the laboratory of bioengineer Stephen Quake at Stanford. His resume does not read as a person deeply imbued with the nuances and ethics of human research. Barrangou says that this appeared during the many rounds of changes made to He's framework. "The writing team has spent a lot of time improving language and content," he says.

It is too early to say whether his feat will bring him fame or just infamy. He is still scheduled to speak at the Human Genome Publishing Summit on Wednesday and Thursday. And the central government of China in Beijing has not yet resigned in one way or another. The conviction would make him a thug and a scientific pariah. Any other solution paves the way for the emergence of an artisanal Crispr IVF industry in China and potentially elsewhere. "It's hard to imagine that this is the only group in the world to do that," says Paul Knoepfler, UC Davis stem cell researcher, who has written a book on the future of baby creators titled GMO Sapiens. "Some might say it broke the ice. Will the others go ahead and make their results public or stop what they do and see how it goes? "

What happens next makes all the difference. The fact that two babies now exist with a modified Crispr gene in a less common form does not change the world overnight. What changes the world is the way society reacts and whether it decides to let such DNA modification procedures become routine.

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