“I understand my work will be controversial but I believe families need this technology and I am willing to take the criticism for them.”
Thus spoke the scientist He Jiankui late last month when he made the shocking claim that he had created the world’s first genetically-modified babies.
The ability to edit human DNA into embryos has been around for more than a decade. But there was a consensus that it was too early to progress with the birth of a genetically-tweaked child. There were too many ethical considerations, not least that any changes would be passed on to future generations.
But He, a professor at the Southern University of Science and Technology in Shenzhen, ignored pleas from senior figures in his field and claims to have moved ahead with the births of genetically-edited babies. On November 25 he posted a video on YouTube explaining that he had used the Crispr-Cas9 gene-editing technology (see WiC396 for more on how it was used to clone a monkey this year) to remove the CCR 5 gene from two embryos to make the pair of twins immune to HIV.
“Two beautiful Chinese girls Lulu and Nana came crying into the world as healthy as any other babies a few weeks ago,” he said.
A few days later at a gene-editing summit in Hong Kong he clarified that he had succeeded in removing all the CCR5 genetic material from one girl and half from the other – suggesting that the second child was not fully immune to the disease.
The girls’ father has HIV.
That was the last time that He was seen in public. After an angry reaction from the scientific community – both in China and overseas – Chinese officials labelled He’s actions as “shocking and unacceptable” and shut down his labs. He had “brazenly violated Chinese laws and breached the bottom line of scientific ethics,” Xinhua quoted the deputy minister of Science and Technology, Xu Nanping, as saying.
The assumption is that He has been taken into custody as the authorities conduct an investigation into his actions.
The fear among other Chinese scientists is that their country is developing a name for itself as the Wild West of experimentation, with loose rules and even laxer enforcement allowing work that would be illegal in many other countries.
In the past year scientists from China have pushed the ethical envelope in several cases including the use of stem cells to treat cancer patients and announcing their intention to carry out the world’s first human head transplant.
In protest at He’s behaviour 120 mainland Chinese scientists wrote an open latter decrying his actions as “madness”.
“It is a great blow to the reputation and development of Chinese science… It is extremely unfair to the vast majority of Chinese scholars who are diligent in scientific research and innovation and adhere to the ethical bottom line of scientists,” they argued.
What is unclear is the extent to which the state may actually have supported He’s work – albeit inadvertently.
He did his doctoral studies in the United States at Rice University and then completed his post-doctoral research at Stanford. He returned to China in 2012 as part of the government’s Thousand Talents Programme which provides funding for experts willing to come back to China from overseas.
As recently as last year He was feted as “genius” by state broadcaster CCTV and his story was particularly compelling because he had been born to poor farmers in Hunan.
Before going to the US he studied physics at Southern University of Science and Technology but switched to biophysics for his doctorate because he saw more opportunity for breakthroughs in that area.
Southern University and the Guangdong provincial department of science and technology say they were unaware of the extent of He’s ambitions. In papers submitted to those bodies he said he was working on a HIV vaccine. It is also unclear if the parents of the two girls were fully informed of the work that he was doing. He has defended himself by saying that he developed a consent document that was peer-reviewed by four other scientists and that the parents were highly educated and understood completely what they were agreeing to.
The removal of the CCR5 gene protects against HIV because it stops production of a protein that the virus latches onto so as to infect other cells. But people without the gene – a phenomenon that can also occur naturally – are more susceptible to other illnesses such as West Nile disease.
Editing genes is also very precise work. There is the risk that in removing one gene you damage adjacent genes as well.
He hasn’t published any academic papers on his work or offered any proof of his claims. As yet, no one in the scientific community has been able to assess if the girls even exist, let alone if they are healthy babies. And of course there is still the possibility that He has made it all up…
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