Tuesday , May 18 2021

Can one stop functioning babies that are arranged with a gene?

Marilyn Marcione and Christina Larson, Associated Press

Posted on Sunday, December 2, 2018 1:37 PM EST

Hong Kong – Early last year, a little-known Chinese researcher appeared at the elite meeting in Berkeley, California, where scientists and ethics discussed technology shaking the area to its core – a new tool for "editing" the genes, DNA strings which form the plan of life.

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

On a visit to the United States, he searched for CRISPR pioneers like Jennifer Dudna of the University of California, Berkeley, and Dr. Matthew Porteus of Stanford University, as well as great thinkers on his use, such as Stanford's ethic Dr. William Hurlbut.

Last week, these shocked researchers saw hijacking an international conference to help them organize incredible claims: He said he helped create the world's first babies that were edited in the world, despite a clear scientific consensus that genetic changes that would could be transferred to future generations should you not try at this time.

The director of the National Institute of Public Health of the United States, Francis Collins, called for an experiment "an accident of a great kind" – a starring "scientist who obviously believed he was a hero. In fact, he crossed every line, scientifically and ethically."

But no one stopped him. How can that be?

To be fair, scientists say there is no specific way to prevent an intention to be mounted with DNA, regardless of which laws or standards are in place. CRISPR is cheap and easy to use – causing scientists to take care almost as soon as technology was invented that something like this would happen.

And there is a long history in the science and medicine of researchers who started experiments prematurely, which were filled with contempt or horror – some of which led to what are now common practices, such as in vitro fertilization.

Editing a gene for reproductive purposes is effectively banned in the United States and most of Europe. In China, ministerial guidelines prohibit research on embryos that "break ethical or moral principles".

It's coming out. He was not quite narrow in his goals. He led international experts at Stanford and Rice Universities, where he worked at postgraduate studies elsewhere, seeking advice before and during the experiment.

Did the scientists who knew about his plans talk? Could they repel him?

The answers are not clear.

"It does not fall into the category of legal responsibility, but ethical responsibility," Collins said. He said he did not say "it does not look like a scientist to take responsibility".

ChinaThe National Commission of Health of China, the Chinese Academy of Sciences and his university said they were in the dark and since then have condemned him.

But three scientists from Stanford-Herblabbut, Porus, and former counselor Stephen Cuke-have had extensive contacts with him in recent years. They and other scientists knew or strongly doubted that He intended to try to make genetically modified babies.

Some confidential people do not think that He will follow him; others expressed concerns that were never obeyed.

Stanford did not respond to a request for an interview.

The earthquake, a professor of bioengineering, was one of the first to know about the ambitions of He. Quake said he met him over the years whenever his former student was in the city, and that He entrusted his interest several years ago to arranging embryos for live births in order to try to make them resistant to the virus AIDS.

Quake said he gave only general advice and encouraged him to talk to the main scientists, to choose situations where there is a consensus that the risks are justified, to meet the highest ethical standards, and to publish their results in peer-reviewed journals.

"My advice was very wide," said Kyuke.

Hurlbut thought he first met him in early 2017, when he and Dona, co-inventor of CRISPR, held the first of the three meetings with leading scientists and ethics to discuss technology.

"Somehow, he ended up at our meeting," Hurlbut said.

Since then, he has returned to Stanford several times, and Hurlbut stated that he "spent many hours" to talk to him about situations where the arrangement of a gene may be appropriate.

Four or five weeks ago, Hurlbut said he came back to him and discussed the arrangement of an embryonic gene to try to prevent HIV. Hurlbut said he suspected he had tried to insert a modified embryo into a woman's womb.

"I warned him," he said. "I did not green his work, I challenged him, I did not approve of what he was doing."

Porteus said he knew that he had spoken to Hurlbut and assumed that Hurlbut discouraged the Chinese scientist. In February, he asked to meet Porteus and told him that he received approval from the hospital board of ethics to go ahead.

"I think he expected me to be more acceptable, and I was very negative," Porteus said. "I was angry at his naivety, I was angry at his inattention."

Porteus said he called "to talk to your senior Chinese counterparts".

After that meeting, "I have not heard from him and I guess he will not continue," Porteus said. "In retrospect, I could raise the nuance and cry."

In the draft text for the female twins, which he planned to submit to the magazines, he thanked the biochemist at UC Berkeley, Mark Devit, for "editing the manuscript." Devitt said he had tried to turn him back and challenged that he had edited the paper. He said he saw the newspaper, but the feedback he provided was "pretty general".

He argues, including that his work resulted in a second pregnancy, can not be independently confirmed and his work has not been published.

In contrast, another American scientist said he not only encouraged him but also played a major role in the project.

Michael Deem, a bioengineering professor at Rice University and a doctoral degree advisor, said he worked with him after scientists returned to China around 2012, and that he is sitting in the advisory boards and has a "small stake" in his two genetic companies in Shenzhen. Deem defended his actions, saying that the research team had done experiments on animals.

"We have more generations of animals that have been genetically modified and produced live offspring," and many studies have unintended effects on other genes, Deem said. Deem also said that he was present at China when some participants in the study agreed to try to edit the embryonic gene.

Rice said he had no knowledge of Deem's involvement and is now investigating.

So far the bulk of attention has focused on regulatory gaps in China.

But that's not the whole story, said Rosario Isasy, an expert on the law of genetics in the US and the United States China at the University of Miami.

"Let's focus on how it happened and why it happened, and the way it happened," said Isabi. "How can we establish a system that has better transparency?"

There is no international governing body for the implementation of bioethical rules, but scientific bodies and universities can use other tools.

"If anyone violates these rules, scientists can destroy them, magazines can refuse to publish, employers can refuse to employ, financiers can refuse to finance," said Henk Greeley, a law and genetics professor at Stanford.

Grayl expects his experiment to have a wave of effects in the academy, whether regulators act or not. "Universities will take a more difficult understanding of what's happening. This incident will alert everyone to any related research."

Of course, sometimes bad beginnings can be turned into better ends.

In 1980, the University of California, Los Angeles, Professor Martin Klein was sanctioned for performing the first genetic therapy of two women in Israel and Italy because he did not receive the approval to try it at UCLA.

Klein published her work instead of publishing it in a scientific journal, and faced criticism of the "genetic engineering" attempt of people when her safety and efficacy had not yet been established in animals. Now genetic therapy is established, although still quite novel, treatment method.

Two years earlier, in 1978, Dr. Robert Edwards was also convicted when he published the first "baby tube tester", Louis Brown. Work later earned the Nobel Prize, and the IFV helped millions to have a child.

And this year, Louise Brown – the mother of two sons, conceived in an old-fashioned way – turned 40 years old.

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