China and the Ethics of Genetically-Edited Babies!

He Jiankui


Dear Commons Community,

Earlier this week, He Jiankui, claimed to have created the world’s first genetically edited babies.  Scientists in China and elsewhere have denounced his accomplishment on ethical grounds.  It has raised questions of whether standards are needed to curb the enthusiasm for advanced scientific research especially in countries such as China that lack ethical supervision.  Below is an excerpt from a New York Times article examining this issue. It raises serious i questions that will come to dominate advanced scientific research in the years to come in areas such as genetic engineering, cloning, and artificial intelligence.



“China has set its sights on becoming a leader in science, pouring millions of dollars into research projects and luring back top Western-educated Chinese talent. The country’s scientists are accustomed to attention-grabbing headlines by their colleagues as they race to dominate their fields.

But when He Jiankui announced on Monday that he had created the world’s first genetically edited babies, Chinese scientists — like those elsewhere — denounced it as a step too far. Now many are asking whether their country’s intense focus on scientific achievement has come at the expense of ethical standards.

“He studied in the United States, why did he only do this in China?” said Wang Yifang, a medical ethics expert with the School of Medical Humanities at Peking University. “It may still be related to the fact that we have a gap in our ethical supervision — it is not very strict, and some people think it’s dispensable.”

More than 100 Chinese scientists have denounced Dr. He’s research — genetically altering embryos that he implanted in a woman who later gave birth to twin girls — as “crazy.” China’s vice minister of science and technology said Thursday that Dr. He’s scientific activities would be suspended, calling his conduct “shocking and unacceptable.”

President Xi Jinping has set a goal of turning China into “a global scientific and technology power” by 2049. Faced with a population that is growing sicker and older, the government is spending millions of dollars specifically on becoming a leader in “genetic manipulation technology.”

To strengthen its position, the government has sought to lure home successful Western-trained Chinese researchers like Dr. He. He was a beneficiary of the Thousand Talents Plan, which gives scientists tens of thousands of dollars in funding and help with housing and schooling for their children.

Ren Xiaoping, an orthopedic surgeon based in Harbin, China, was criticized after proposing what would have been the first transplant of a head to another body.CreditGilles Sabrie for The New York Times

Before he became infamous this week, those who knew of Dr. He saw him as a modern Chinese success story.

He was born to farmers in one of the poorest parts of Hunan Province in southern China. As a high school student, he built a small laboratory at home, believing he could be China’s Einstein, according to an article this week by Jiemian, a Chinese news website. He graduated from the University of Science and Technology of China with a physics degree.

But by the time he arrived in the United States on a Chinese government scholarship, Dr. He felt the golden age of physics was over, according to the article. He switched to biophysics and studied at Rice University in Houston, where he first worked with Crispr, the gene-editing technology he says he used to alter the babies’ genes.

After studying at Rice, Dr. He went on to postdoctoral research at Stanford University. In 2012, he returned to China, basing himself in the booming southern metropolis of Shenzhen, which gave him funding. Dr. He founded two genetic testing companies, Direct Genomics and Vienomics, which aimed to use gene sequencing for medical purposes.

Many scientists in China say the drive to succeed is so strong that they adopt a “do first, debate later” approach. Wang Yue, a professor at the institute of medical humanities of Peking University, said many scientists lacked awareness of medical ethics and of laws and regulations relevant to their fields.

“It is true that many scientists are very bold and think of science as their independent kingdom,” Dr. Wang said. “So they are not willing to listen to the outside world, including ethics committees and administrative agencies that want to supervise and review them.”

In China, clinical trials are vetted for ethical concerns just once, by a hospital’s ethics review committee. Dr. He said his research was approved by the ethics board of the hospital Shenzhen Harmonicare. The hospital denied that, although one of its shareholders had appeared in an Associated Press video talking about Dr. He’s project.

Adding to the confusion, the university to which Dr. He is attached, the Southern University of Science and Technology, said it had had no idea that Dr. He was conducting research on babies, even though he said he got his funding from the university. At the genome editing conference in Hong Kong, Dr. He acknowledged that he had not informed his university about his research.

Dr. He told a genome editing conference in Hong Kong on Wednesday that he was proud of what he had done, saying he intended to engineer babies who would not be vulnerable to H.I.V. infection. He recruited couples for his research in which the man had H.I.V. and the woman did not.

Many scientists have noted that there are simpler ways to protect newborn babies with an infected parent from getting H.I.V. But Chinese couples have less access to such treatments because of a law barring people with “sexual diseases,” including H.I.V., from in vitro fertilization treatment. That suggests that Dr. He would have been more likely to find willing recruits among couples living with H.I.V.

Bai Hua, the head of Baihualin, an AIDS advocacy group that helped Dr. He recruit the couples, said that he now regretted doing so and was deeply worried about the families. In a statement posted on his organization’s official WeChat account, Mr. Bai, who uses a pseudonym, said he felt “deceived, but I don’t want to shirk responsibility.”

“I hope to use this venue to launch a specific appeal,” Mr. Bai wrote. “With the occurrence of this incident, please conduct more ethics-related science and medical training for volunteers in the AIDS community as well as medical workers and staff in these related fields.”

At the conference in Hong Kong this week, Dr. He said the parents of the twins and seven other couples who participated in his research had been fully informed of the risks involved, and that they understood what was being done to their embryos.

But one H.I.V.-infected man Dr. He’s team tried to recruit said he was not told of the ethical concerns about editing human embryos, according to Sanlian Weekly, a Chinese newsmagazine. The man said a researcher had told him that the probability of his having an unhealthy baby was low and that the team had achieved a high success rate in testing with animals.

The man said the researcher left him feeling that the procedure had more potential for benefits than risks. But his wife was concerned that harvesting the eggs would be painful, and the man decided not to sign up, according to the article.

Dr. He’s announcement was a moment of reckoning for gene editing well beyond China. Jennifer Doudna, a co-inventor of Crispr and a professor at the University of California, Berkeley, said it was “an opportunity to change how we’re regulating scientific use of this technology,” possibly by making the “somewhat vague” guidelines more specific. She said severe consequences could be established for breaking those guidelines, perhaps even involving an international body like the United Nations.

In China, many say an update of the laws governing genetic research is long overdue. A former vice minister of health, Huang Jiefu, called for the establishment of a central body to supervise bioscience experiments, according to the state-run Global Times newspaper. He said the country’s 2003 regulations governing embryo experiments — which the government says Dr. He violated — were outdated.

Wang Yuedan, a professor of immunology at Peking University, said the penalties for violating those regulations were not harsh enough. They are not legally binding and do not detail any punishments.

“What happened this time was an ethics disaster for the world,” Dr. Wang said. “But perhaps it will encourage biomedical research scientists all over the world, including China, to pay more attention to the ethical guidelines regarding the human body.”


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