Everyone was completely taken by surprise when, earlier this week, a Chinese scientist announced that he had used gene-editing technology to alter the genes of twin girls. The lack of transparency and gross lack of oversight, ethical or otherwise, attracted widespread international scrutiny. Today, the Chinese government announced that it had ordered a temporary halt on research for all personnel involved with the controversial gene-editing technique.
No shame, no remorse
He Jiankui, an Associate Professor at Southern University of Science and Technology, in Shenzhen, had announced that twin baby girls born this month had their embryonic genes edited using CRISPR technology. The Chinese researchers modified the CCR5 gene in such a way as to potentially make the offspring resistant to HIV.
The major concern is that any edits will be passed onto offspring, thus making their way into the gene pool. As such, potentially troublesome mutations could become relatively widespread. On the other hand, even if the gene editing process is flawless, any beneficial gene edits — such as enhanced resistance to disease and even intelligence — could result in unfair advantages and may open the door for eugenic practices.
“If true, this experiment is monstrous,” said Julian Savulescu, a professor of practical ethics at the University of Oxford. “The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer.”
“There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it. This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit. In many other places in the world, this would be illegal punishable by imprisonment.”
Germline gene editing is banned in many countries. However, while it is not allowed per se, China does not stipulate any punishments for the practice.
Few people were aware that such work was being practiced, which certainly didn’t help calm down the scientific community. Some people hoped that He hadn’t really messed with the genomes of live human babies, since the research was not independently verified by a third party or peer-reviewed. However, all signs point to the fact that the procedure was indeed carried out. On Wednesday, He presented his work in great detail at the Second International Summit on Human Genome Editing in Hong Kong. At the end of the presentation, He stated he was proud of what he had done.
Speaking to New Scientist, Helen O’Neill, a CRISPR specialist at the University College London who attended the conference, said that the Chinese researchers really did it.
“Among the scientific community, we’re very sure. He gave quite an impressive presentation on quite extensive and thorough research that he had done both in animal and human embryos. The initial shock meant people went “Surely not – he has to prove it.” But I never had any doubt,” she said.
There are a number of very odd things about this whole affair. He has been off the radar for months, working on his research while on unpaid leave. Although the documents the Chinese researchers filed for clinical trials included a valid ethical review, the hospital involved denied that its ethics review committee ever met to discuss the work. China’s Southern University, where He and colleagues are employed, said it did not support the experiment. The university also announced that it has launched an investigation.
“The research work was carried out outside the school by Associate Professor He Jiankui. He did not report to the school and the department of biology, and the school and the biology department did not know about it,” a spokesperson from the university said in a statement.
The backlash following the most controversial (and some would say scandalous) research of the year was extremely intense. Following international outcry, the Health Ministry, Science and Technology Ministry and China Association for Science and Technology stated that “relevant bodies have been ordered to temporarily halt the scientific research activities of relevant personnel.”
The organizers of a conference where He announced the live gene editing also condemned the work, calling it “deeply disturbing” and “irresponsible.”
“Even if the modifications are verified, the procedure was irresponsible and failed to conform with international norms,” read a statement from the Second International Summit on Human Genome Editing,
These sentiments were shared by colleagues in the United States.
“The events in Hong Kong this week clearly demonstrate the need for us to develop more specific standards and principles that can be agreed upon by the international scientific community,” U.S. National Academy of Sciences (NAS) president Marcia McNutt and U.S. National Academy of Medicine (NAM) president Victor Dzau said in a joint statement.
What’s shocking is that the twin baby girls will not be alone. Very casually, He announced during a Q&A at his keynote at this week’s Hong Kong conference that another CRISPR pregnancy is underway.
No one knows what will happen next. It’s simply unprecedented to have so many written and unwritten rules broken repeatedly. One thing’s for sure, all of this shaping up to be a huge disaster. He’s career looks like it’s going down the drain — but that should be the least of anyone’s worry. The real challenge now is preventing a biological meltdown and making sure nothing so reckless is allowed to ever happen again.
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