Monday, 10 Dec 2018
World

Could someone have stopped the work of genetically modified babies?

HONG KONG – At the beginning of last year, a little-known Chinese researcher came to an elite meeting in Berkeley, California, where scientists and ethicists were discussing a technology that had turned the tide – a new tool for "editing" the genes, the DNA chains that form the plane of life.

The young scientist, He Jiankui, understood the power of this tool, called CRISPR, to transform not only the genes, but also his own career.

During his visits to the United States, he sought out CRISPR pioneers, such as Jennifer Doudna of the University of California, Berkeley, and Dr. Matthew Porteus of Stanford University, as well as leading thinkers on its use. , like Dr. William Hurlbut, Stanford ethicist.

Last week, these shocked researchers witnessed the hijacking of an international conference that they helped to organize with astonishing affirmation: it helped to create the first baby in the world to be endowed with modified genes, despite a clear scientific consensus that genetic modifications that can be passed on to future generations should: not be attempted at this stage.

US National Institutes of Health director Francis Collins described He's experience as a "major genre mishap," featuring "a scientist who apparently believed he was a hero." In fact, he has crossed all limits, scientifically and ethically. "

But nobody stopped him. How can this be?

To be fair, scientists say there is no sure way to prevent a person who is interested in DNA, regardless of the laws or standards in force. CRISPR is cheap and easy to use – that's why scientists began to worry as soon as the technology was invented as something like that would be the case.

And there have long been scientific and medical researchers who have experimented prematurely with scorn or horror, sometimes leading to practices that are now commonplace, such as in vitro fertilization.

Gene editing for reproductive purposes is effectively banned in the United States and most European countries. In China, ministerial directives prohibit research on embryos that "violate ethical or moral principles".

It turns out he was not very discreet about his goals. He sought out international experts at Stanford and Rice Universities, where he had done graduate studies, and elsewhere, for advice before and during the experiment.

Should scientists who knew his plans express themselves? Could they have dissuaded him?

The answers are not clear.

"This does not fall into the category of legal liability, but ethical responsibility," Collins said. He said that not speaking "does not seem to be a scientist assuming his responsibilities".

China's National Health Commission, the Chinese Academy of Sciences and its own university said they were in the dark and have since sentenced.

But three Stanford scientists – Hurlbut, Porteus and Stephen Quake, his former advisor, have had many contacts with him in recent years. They knew or strongly suspected that he intended to create genetically modified babies.

Some confidants did not think he was going to follow; others have expressed concerns that have never been heard.

Stanford has not responded to an interview request.

Quake, professor of bioengineering, was one of the first to know his ambition. Quake said that he had met her over the years, every time her former student was in town, and that he had entrusted, a few years ago, his interest for the modification of live birth embryos to make them resistant to the AIDS virus.

Quake said he only gave general advice and encouraged him to talk to scientists, to choose situations where it was generally accepted that the risks were justified, to meet the highest ethical standards and publish its results in a peer-reviewed journal.

"My advice was very broad," said Quake.

Hurlbut thinks that he met her for the first time in early 2017, while Doudna, co-inventor of CRISPR, had organized the first of three meetings with renowned scientists and ethicists to discuss the technology.

"In one way or another, he ended up at our meeting," said Hurlbut.

Since then, he has returned several times to Stanford and Hurlbut stated that he "had spent many hours" discussing with him situations in which a genetic modification might be appropriate.

Four or five weeks ago, Hurlbut said that he had come to see him again and had discussed the editing of embryo genes to try to prevent HIV. Hurlbut said he suspected he had attempted to implant a modified embryo in his wife's womb.

"I admonished him," he says. "I do not have a green light on his job. I challenged him about it. I did not approve what he was doing.

Porteus said that he knew that he had spoken with Hurlbut and assumed that Hurlbut was discouraging the Chinese scientist. In February, he asked to meet Porteus and told him that he had obtained the approval of a hospital ethics committee to go ahead. .

"I think he was expecting me to be more receptive, and I was very negative," Porteus said. "I was angry at his naivety, I was angry at his carelessness."

Porteus said he had urged him "to go talk to your most senior Chinese colleagues".

After this meeting, "I did not hear about it and I assumed it would not proceed," Porteus said. "In retrospect, I could have started crying."

In an article project on gene edited binoculars, which he planned to submit to newspapers, he thanked the Berkeley University biophysicist, Mark DeWitt, for having " edited the manuscript ". DeWitt said that he had tried to dissuade him and had disputed the fact that he had edited the document. He said he saw the newspaper, but his comments were "rather general".

He claims that his work did not result in a second pregnancy and that his work was not published.

On the other hand, another American scientist said that he had not only encouraged He, but had played an important role in the project.

Michael Deem, a professor of bioengineering at Rice University and a Ph.D. advisor, said he'd been working with He since the scientist's return to China around 2012, and that he's sitting on the advisory board and holding " a small participation "in the two companies of He Genetics. in Shenzhen. Deem defended He's actions, saying the research team had already done experiments on animals.

"We have several generations of genetically modified animals and have produced viable offspring," as well as extensive research on unintended effects on other genes, Deem said. Deem also said that he was present in China when some study participants gave their consent to try editing embryo genes.

Rice said she was not aware of Deem's involvement and is currently conducting an investigation.

Until now, attention has focused mainly on regulatory gaps in China.

But that's not all, said Rosario Isasi, a specialist in genomics law in the United States and China at the University of Miami.

"Let's see what happened and why, and how it went," Isasi said. "How can we establish a system that has better transparency?"

There is no international governing body to enforce the rules of bioethics, but scientific bodies and universities can use other tools.

"If someone breaks these rules, scientists can ostracize, journals may refuse to publish, employers may refuse to employ, funders may refuse to fund," said Hank Greely, professor of law and genetics at Stanford.

Greely expects his experience to have repercussions on the academic world, whether the regulators act or not. "Universities will take a closer look at what is going on. This incident will alert everyone about any related research. "

Of course, bad beginnings can sometimes turn into better ends.

In 1980, at the University of California at Los Angeles, Professor Martin Cline was sanctioned for performing the first gene therapy on two women in Israel and Italy because he had not obtained permission to try it at UCLA.

Cline announced his work rather than publishing it in a scientific journal and was criticized for trying "genetic engineering" on people when its safety and efficacy had not yet been established in animals. Today, gene therapy is an established treatment method, although still relatively new.

Two years earlier, in 1978, Dr. Robert Edwards was also reported when he announced the world's first "test tube baby," Louise Brown, in the press. The work then won a Nobel Prize and IFV has helped millions of people to have a child.

And this year, Louise Brown – mother of two sons, designed in the old way – was 40 years old.

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Larson reported from Washington, D.C.

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This Associated Press series was produced in partnership with the Howard Hughes Medical Institute's Department of Science Education. The AP is solely responsible for all content.

Copyright 2018 The Associated Press. All rights reserved. This material may not be published, disseminated, rewritten or redistributed.

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