Last November, huge news broke that the world's first gene-edited babies had been born in China. This massive milestone seemed to come out of nowhere, because the scientist behind the breakthrough, He Jiankui, worked in secret. The Chinese government launched an investigation into the questionable ethics and methods behind the work, and the preliminary results have now been released. They condemn the actions of He and confirm some of the questions previously raised about this strange case.
Gene-editing technologies such as CRISPR-Cas9 have enormous potential to help treat a wide range of illnesses, like cancer, muscular dystrophy, and hereditary diseases. But the method has attracted its share of controversy as well, and more work is needed to determine just how safe it is for use in humans.
But He skirted around the ongoing ethics debates by conducting experiments in secret, only revealing his work after the birth of the gene-edited twin girls. According to He himself, his team edited embryos to delete a gene called CCR5, which should let the babies develop a natural immunity to HIV. But bringing those embryos to term has been explicitly banned, and immediately after the announcement, the Chinese government launched an investigation into these shady practices.
According to the preliminary results of the investigation made public by China's state-run news agency Xinhua, He deliberately avoided any supervision, raising his own funds and assembling his team outside of the proper channels. Worse still, he reportedly faked an ethical review certificate to make it look like he had the all-clear to proceed.
Another ethical allegation says that He manipulated the results of blood tests to get around safety regulations. HIV-positive people are not allowed to use assisted reproductive techniques, but because He's work centered on a genetic "fix" for the virus, he fudged the documents so his patients could participate. Apparently, He asked other people to take blood tests and pass them off as samples from the HIV-positive patients.
The investigation also confirmed another rumor that came out a few days after the initial reveal in November – a second participant is pregnant. Of the eight couples that volunteered for the experiment, that means two have now fallen pregnant, while one left partway through the study and the remaining five didn't manage to conceive.
The investigation says that He's primary motivation for the experiments was personal fame and monetary gain. The international backlash against the initial report of the birth of the gene-edited babies was fierce, and many scientists welcome legal action against He.
"The use of gene editing to alter the human germline without a clear medical need or careful weighing of the significant risks involved was a deeply disturbing application of powerful and promising technology, and apparently done largely for fame and fortune of the scientist(s) involved," says Darren Saunders, a gene technology specialist at the University of New South Wales. "They have not only placed the health of these babies at risk without a clear medical need, but also placed a cloud over this technology that will likely hinder its justifiable, ethical and responsible use in many other areas of real need, where it holds significant promise.
"The preliminary findings reported here indicate that the scientists were deliberately operating outside ethical and regulatory boundaries, which most responsible scientists will find deeply troubling. It is really encouraging to see swift action by Chinese authorities and sends a clear statement of zero tolerance for this reckless and dangerous behavior."
With the investigation ongoing and another gene-edited baby on the way, this story is obviously far from over. The babies and the pregnant volunteer will be monitored closely by medical professionals.
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