SHENZHEN, China (AP) – The Chinese scientist who helped create the world's first genetically modified babies left much of his research secret, leaving much of his research secret for the purpose 'history.
He Jiankui's heightened aspirations began to materialize in 2016, a year after another team of Chinese researchers sparked a global debate with the revelation that they had altered the DNA of the world. human embryos in the laboratory. He quickly decided to push the limits of medical ethics even further.
The Chinese-born, US-trained scientist told his former advisor at Stanford University about his interest in gene-modified babies. Last month, he told the Associated Press that he had been working on the experiment for over two years – a period during which, on his own, he concealed information at some of the medical staff involved in the research, as well as on their own. bosses.
It took advantage of the poorly formulated and irregularly enforced regulations and generous funding available today in China, bypassing in some cases even local protocols and possibly laws.
"The huge ambition in China, the desire to be the first, comes up against the desire to create and apply standards," said Jing-Bao Nie, an expert in Chinese bioethics at the University of China. 39, University of Otago, New Zealand.
On the eve of an international summit on gene editing in Hong Kong this week, the 34-year-old scientist has amazed the world by claiming that he had used the powerful tool to "get it right." CRISPR gene editing to change the DNA of binoculars born earlier this month. His request could not be independently confirmed and was not published in a newspaper, but it quickly aroused the indignation of researchers and regulators.
Chinese and international scientists said the experiment should never have been attempted.
"They chose to bypass the whole process. They became thugs, "said Dr. Kiran Musunuru, an expert in gene editing from the University of Pennsylvania.
On Monday, China's National Health Commission ordered local authorities in Guangdong province – including Shenzhen's He laboratory – to investigate its actions. It was not clear he could face criminal charges.
His career did not follow the expected scenario. He has not published much of his previous research on modifying the DNA of mice and monkeys, as most scientists would have done. And the way he advanced his latest study included questionable decisions about secrecy and medical ethics.
"If you want to do something so controversial and so early, and want to be the leader of this movement, you want to do it in an exemplary way," said Eric Topol, director of the Scripps Research Translational Institute. in California.
He, who says his parents were farmers, was born in 1984 in southern China. At the time, the country was just emerging from the isolation of the Mao era and the average annual income was only $ 300. The phones were rare. Many villages were not yet connected by paved roads.
Initially, he followed a common path for scientists of his generation. After graduating from the University of Science and Technology of China, he moved to the United States for graduate studies.
There, he earned a Ph.D. in Biophysics from Rice University in 2010, then spent a year as a postdoctoral researcher at Stanford. His Stanford consultant, Stephen Quake, described him as "very brilliant" and "at the forefront of the desire to apply new technologies to biology".
In 2012, he returned to China to take up a position at Southern University of Science and Technology, an institution only one year old, funded in part by the government of Shenzhen, a city in southern China known for technology.
"He was really interested in the concept of editing the human genome," and what a situation would be appropriate, Quake said, recalling one of his visits. Quake gave his opinion, but did not supervise the study.
His research could not have been conducted legally in the United States or in most European countries.
China has banned human cloning for reproductive purposes. In 2003, its Ministry of Health issued a guideline for in vitro clinics, banning "clinical experiments contrary to ethical or moral principles".
The young scientist saw this ambiguity as an opportunity. Sometimes researchers – Chinese or foreign – who can not get financing or authorization for unconventional projects in the United States or Europe find financial support and opportunities in China.
Ren Xiaoping, a surgeon aiming to perform the first human head transplant, worked for many years in US hospitals, but returned to China because a medical institute in his hometown of Shenyang had agreed to support his research.
Guoping Feng, a neuroscientist at the Massachusetts Institute of Technology, is working in a research center in Guangdong Province where his associates are generating genetically brain-damaged monkeys to study the development of symptoms similar to those of men. autism. China imposes fewer restrictions on the use of laboratory animals.
In 2016, he contacted an AIDS advocacy group in Beijing to help recruit potential study participants, couples trying to have children where the man was HIV-positive . There are already proven ways to guard against transmission of the AIDS virus during IVF. Instead, his goal was to rewrite DNA before birth to reduce the risk of contracting HIV after birth.
Other scientists have tested similar gene editing techniques on laboratory antenna cells to prevent hereditary diseases, but not leading to live births.
For his CRISPR work, he did not seek the prior approval of the federal regulators. He listed his study in an online register of Chinese clinical trials on November 8 – long after the start of his work.
His laboratory has circumvented the standards that many of his Chinese peers respect.
For example, the laboratory did not inform all the medical staff who directly assisted future couples that the study involved gene editing. According to one of the embryologists involved in the research, Qin Jinzhou, they thought they would participate in standard IVF attempts, with an additional step of mapping the genomes without handling the embryo.
Patient consent forms were vaguely referring to the study as an "AIDS vaccine development" program.
He also sought the consultation of an ethics committee outside the hospitals involved in the research. In October, Lin Zhitong, founder of the Harmonicare Hospital for Women and Children in Shenzhen, told the AP that the ethics committee of his hospital had advised He, but that he had no other involvement.
Retention of information by medical staff on gene editing was acceptable as some fertility doctors might not agree to help HIV-positive couples, said Lin, who also said that He had not worked as a doctor or scientist, but that he belonged to a family of real estate developers.
Deceiving or circumventing study participants is not a common practice in China, and "this violates the general spirit of informed consent," said Nie, an expert in bioethics. "In some cases, ethics committees are just rubber stamps."
After his claim, Harmonicare issued a statement condemning gene editing by humans and announced an investigation into his links with He's lab.
The Shenzhen scientist has published results in YouTube videos. He announced his feat in English, not in Chinese.
"He wanted to attract the attention of the international community. Now he got what he really wanted, "said Nie.
His own university remained in the dark. South University of Science and Technology said in a statement that it was unaware of its work and that it "seriously violates ethics and academic standards."
His research team included Michael Deem, his former rice consultant, a physics professor, who serves on the scientific advisory board of his two genetics companies. Rice said she opened an investigation into Deem's involvement.
In an interview with his Shenzhen lab last month, he said that genetically modified babies are inevitable. He wanted to be the first.
"There will be someone, somewhere, who will do it," he said. "If it's not me, it's someone else."
Follow Christina Larson on Twitter at https://twitter.com/larsonchristina .
AP Chief Medical Editor Marilynn Marchione in Hong Kong, researcher Fu Ting and video reporter Emily Wang in Beijing contributed to this report.
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.