Chinese scientist behind world’s first gene-edited babies shares children’s status

Chinese scientist behind world’s first gene-edited babies shares children’s statusChinese scientist behind world’s first gene-edited babies shares children’s status
via The He Lab
Carl Samson
February 10, 2023
He Jiankui, the Chinese scientist behind the world’s first genetically modified human babies, has provided an update on the children’s lives.
The researcher first announced the controversial babies — a pair of twins — in 2018, drawing massive condemnation from the international community. Many accused him of “playing god” as he harnessed the power of CRISPR-Cas9, a tool that alters DNA sequences and modifies gene functions.
He also sparked outrage in his native China, where he was jailed for three years for deliberately violating national biomedical regulations in pursuit of “personal fame and gain.” He was released in April 2022.
Nearly a year after his release, the scientist spoke with South China Morning Post and provided an update on the children’s status. 
The twins are now aged 4, while a third child — born in 2019 — would be a year younger.
“They have a normal, peaceful and undisturbed life,” He told SCMP. “This is their wish and we should respect them.”
The scientist said he did not want the children to be disturbed for scientific research. “The happiness of the children and their families should come first,” he added.

In an apparent admission of his errors, He also told SCMP that “I did it too quickly.” He confessed to having a feeling of “huge unease” and vowed to be ready to provide medical follow-ups for the rest of the children’s lives.
The twins, named Lulu and Nana, were born with altered copies of a rare gene called CCR5, which supposedly made them immune to HIV. 
He sought to equip them with a version of the gene that is naturally present in about 1% of Northern Europeans.
However, editing errors resulted in the siblings having an entirely new version of the genes. Each was supposed to have a pair of the modified CCR5 from each parent.
One of Lulu’s copies had 15 base pairs deleted, while the other remained unaltered. Meanwhile, Nana has an extra pair in one copy, while four were deleted from the other.
Critics of He’s study argue that the new genes are not the intended mutation at all.
“The team didn’t actually reproduce the known mutation,” an MIT Technology Review from December 2019 read. “Rather, they created new mutations, which might lead to HIV resistance but might not.”
He has since been fired from his job as an associate professor of biology at the Southern University of Science and Technology in Shenzhen. This year, he is slated to visit several universities and conferences for a series of talks, including Oxford next month.
When asked if he would use a different approach if given the same chance to experiment, He said he does not have an answer yet.
However, he told The Guardian does not view the controversy as a barrier to running clinical trials in the future:

According to Chinese law, when a person has served the prison [sentence], after that they begin again with full rights. Compared to the past experience, it’s more important what we’re doing today that determines whether I move on or not.

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