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Echo Xie

The world’s first genetically edited children are living happily with their parents, according to He Jiankui, the controversial scientist who created three gene-edited babies in 2018 and 2019.
“They have a normal, peaceful and undisturbed life. This is their wish and we should respect them,” He told the South China Morning Post in an interview on Friday.
He said he did not want to see the children being disturbed too much for the purpose of scientific research, adding that “the happiness of the children and their families should come first”.
When asked if he worried about the children’s future, He said his feeling was like the anticipation and worry that every father would have for the future of his children.
“You will have high expectations of them, but you also have huge unease,” he said.
In 2018, He stunned the world when he announced that he had created two genetically modified twin girls, nicknamed Lulu and Nana. A third child, Amy, was born the following year, also in China.


He used the gene-editing tool CRISPR-Cas9 to rewrite the CCR5 gene, which is known to confer resistance to HIV because of a genetic mutation. A small percentage of people born naturally with the mutation can be immune to infection by HIV.
In an unpublished study by He and other authors on the human experiment, they claimed the twin girls’ CCR5 genes were “edited successfully” and were expected to confer either complete or partial HIV resistance.
Gene editing for human reproduction is ‘irresponsible’, says UN panel
But some scientists and experts who read the study said the researchers’ own data did not support their main claims, according to a report by the MIT Technology Review in December 2019, which released excerpts from the unpublished manuscripts.
“The team didn’t actually reproduce the known mutation. Rather, they created new mutations, which might lead to HIV resistance but might not,” the report said.
As part of the informed consent for the research, He said his team was obliged to track the health status of the children for their families.
“After the age of 18, the children will decide whether to do medical follow-ups for their individual needs. We committed to doing this for their lifetimes,” he said.


He and his team said they had committed to buying extra health insurance for the children in addition to public health insurance. But because their births became known, no insurance company wanted to be involved.
As an alternative plan, He now wants to set up a charitable foundation to raise money and cover health-related expenses for the three children.
He paid a heavy price for his experiments and was released from prison in April 2022 after serving a three-year sentence for illegal medical practices.
“I did it too quickly,” he said, adding that he learned a lot and changed a lot over the past four years.
Chinese gene-edited babies scientist seeks funding for DNA synthesiser
He was asked if he would use a different approach if he ever had a similar opportunity.
“The question is too complex and I do not yet have an answer,” he replied.
He said he planned to put his thoughts in an article and share it with the international scientific community when the time was appropriate.
He has been invited to visit the University of Oxford next month to give talks about the use of CRISPR gene-editing technology in reproductive medicine.
In the meantime, He has set up a new laboratory in Beijing to work on affordable gene therapies for rare genetic diseases such as Duchenne muscular dystrophy – a deadly condition that mainly affects teenage boys and young men. He also plans to register a not-for-profit research organisation called the Beijing Institute for Rare Disease Research.
“I have a long-term vision, which is that each of us should be free from inherited diseases.”


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Science

‘Respect them,’ says He Jiankui, creator of world’s first gene-edited humans

The scientific community has questioned the ethics of an experiment that Chinese scientist He Jiankui, seen here in a 2018 photo, went to jail for. Photo: AFP

Gene-edited babies: Chinese scientist He Jiankui ‘may have created unintended mutations’

Chinese scientist He Jiankui made claims of a medical breakthrough that could control the HIV epidemic. Photo: AFP

‘Foolish choice’: Rogue Chinese scientist He Jiankui’s gene-edited twin babies face risk of premature death

Chinese scientist He Jiankui speaks at a summit on human genome editing at the University of Hong Kong in November. Photo: Sam Tsang

FILE - In this Oct. 9, 2018, file photo, an embryologist who was part of the team working with scientist He Jiankui adjusts a microplate containing embryos at a lab in Shenzhen in southern China’s Guandong province. Six months after He was widely scorned for helping to make the world’s first gene-edited babies, new information suggests that others may be interested in pursuing such work outside the United States. (AP Photo/Mark Schiefelbein, File)

News

China

Scientists still question ethics of an experiment that the scientist went to jail for
‘I did it too quickly,’ says He, who now hopes to develop therapies for inherited diseases


Scientists still question the ethics of an experiment that Chinese scientist He Jiankui went to jail for.


SCMP Exclusives

Exclusive | ‘Respect them,’ says He Jiankui, creator of world’s first gene-edited humans

Scientists still question ethics of an experiment that the scientist went to jail for ‘I did it too quickly,’ says He, who now hopes to develop therapies for inherited diseases

Scientists still question ethics of an experiment that the scientist went to jail for

‘I did it too quickly,’ says He, who now hopes to develop therapies for inherited diseases