The gene-editing scientist saves a lot of his undisclosed work



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SHENZHEN, China – Chinese scientists who say that he helped make the first babies edited genes outside the traditional career path, keeping most of the secrets of his research in pursuit of a history of making greater goals.

He Jiankui's big aspirations began to form in 2016, the year after another Chinese research team sparked a global debate with the statement that they had changed human embryo DNA in the laboratory. He immediately decided to push the boundaries of medical ethics even further.

Scientists born in the United States, who have been trained in the United States, once told Stanford University's former advisor about his interest in gene-edited babies. He told The Associated Press last month that he had worked on the experiment for more than two years – a period in which, with his own account, he hid information from several medical staff involved in the research, and apparently from his own. boss.

He took advantage of loosely and irregularly enforced regulations and generous funds currently available in China, in some cases even passing local protocols and possibly laws.

"The big ambition in China, the desire to be first, collided with the desire to create and enforce standards," said Jing-Bao Nie, a Chinese bioethics expert at Otago University in New Zealand.

On the night of the international gene editing meeting in Hong Kong this week, the 34-year-old scientist surprised the world by claiming that he had used a powerful CRISPR gene editing tool to change the DNA of twin girls born earlier this month. His claim cannot be confirmed independently, and it has not been published in the journal, but it has provoked rapid anger from both researchers and regulators.

Mainstream scientists in China and globally say the experiment should never have been tried.

"They chose to shorten the whole process. They become naughty, "said Dr. Kiran Musunuru, University of Pennsylvania gene editing expert.

China's state broadcaster CCTV reported Tuesday that it might be investigated by the Ministry of Science and Technology if its birth was confirmed.

The career path does not follow the expected script. He did not publish most of the previous research on modifying mice and monkey DNA, as most scientists would do. And the way he advances his latest research includes questionable decisions regarding confidentiality and medical ethics.

"If you are going to do something controversial and as early as possible, and you want to be the leader of this movement, you want to do it in an exemplary way," Dr. Eric Topol, who heads the Scripps Research Translational Institute. in California.

He, who said his parents were farmers, was born in 1984 in southern China. At that time, the country had just begun to emerge from the isolation of the Mao era, and the average annual income was only $ 300. Telephone was rare. Many villages have not been connected with paved roads.

Initially, he followed the general path for scientists of his generation. After graduating from China's University of Science and Technology, he moved to the United States for postgraduate studies.

There he received his Ph.D. in biophysics from Rice University in 2010, then spent a year as a postdoctoral researcher at Stanford. His Stanford adviser, Stephen Quake, described it as "super bright" and "on the cutting edge trying to apply new technology to biology."

In 2012, he returned to China to take a position at the Southern University of Science and Technology – an institution that was opened only a year earlier and partly funded by the Shenzhen government, a city in southern China known as its technology company.

"He was really interested in the idea of ‚Äč‚Äčediting the human genome," and what situation was right, Quake said, recalling one of He's visits. The earthquake gave feedback, but did not supervise the research.

His research is not possible legally in the US or in most parts of Europe.

China has banned human cloning for reproduction. In 2003, the Ministry of Health issued guidelines for in-vitro clinics that prohibit "clinical experiments that violate ethical or moral principles."

Young scientists see this ambiguity as an opportunity. Sometimes researchers – Chinese or foreign – who cannot obtain funding or permission for unconventional projects in the US or Europe find financial support and opportunities in China.

Ren Xiaoping, a surgeon who aims to do the first human head transplant, worked for years at a US hospital but returned to China because the medical institute in his hometown in Shenyang agreed to support his research.

Guoping Feng, a neurologist at the Massachusetts Institute of Technology, worked with research facilities in Guangdong province where his colleagues genetically engineered monkeys with brain disorders to study the development of symptoms similar to autism. China has fewer restrictions on the use of experimental animals.

In 2016, he reached out to the AIDS advocacy group in Beijing to help him recruit prospective study participants – couples who tried to have children where the man was HIV positive. There are already proven ways to prevent transmission of the AIDS virus in IVF. Instead, the goal is to rewrite DNA before birth to make children less likely to contract HIV after they are born.

Other scientists have tested editing techniques for similar genes in cells on laboratory plates to prevent inherited diseases, but do not lead to live births.

For the CRISPR work, he did not seek prior approval from the federal regulator. He enrolled his studies in the Chinese clinical trial online registry on November 8 – long after it began.

His lab revolves around the norms that many of his Chinese colleagues uphold.

For example, the lab does not notify all medical staff who directly help the expected partner that the research involves editing genes. They believe they are helping in standard IVF efforts, with additional steps to map the genome, not manipulating the embryo, according to one embryologist involved in the study, Qin Jinzhou.

The patient consent form refers to this study indirectly as an "AIDS vaccine development" program.

He also requested consultation from an ethics committee outside the hospital involved in the study. Lin Zhitong, founder of the Shenzhen Harmonicare Women's & Children's Hospital, told AP in October that his hospital ethics committee notified Mr. He, but did not have any other involvement.

Cutting information from medical staff about gene editing is acceptable because some fertility doctors may not agree to help HIV positive partners, said Lin, who also said he did not work as a doctor or scientist, but came from a family of hospital property developers.

Deceiving or working around study participants is not standard practice in China, "and it violates the broad spirit of informed consent," said Nie, a bioethics expert. "In some cases, the ethics committee is just a rubber stamp."

After his claim, Harmonicare released a statement condemning the editing of human genes and announced an investigation into any relationship with He's laboratory.

Shenzhen scientists released several findings in a YouTube video. He announces achievements in English, not Chinese.

"He wants to attract attention in the international community. Now he gets what he really wants, "Nie said.

His university is kept in the dark. The South University of Science and Technology said in a statement that they were not notified of Mr. He's work, and that "seriously violated academic ethics and standards."

His research team includes former Rice adviser, physics professor Michael Deem, who sits on the scientific advisory board of two genetic companies He. Rice said she had launched an investigation into Deem's involvement.

In an interview last month in his laboratory in Shenzhen, He said babies who were edited by genes could not be avoided. He wants to be the first.

"There will be someone, somewhere, who will do this," he said. "If it's not me, it's someone else."

Follow Christina Larson on Twitter at https://twitter.com/larsonchristina .

AP Chief Medical Writer Marilynnione in Hong Kong, researcher Fu Ting and video journalist Emily Wang in Beijing contributed to this report.

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

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