In an unpublished study by He and other authors on the human experiment, they claimed the twin girls’ CCR5 genes were “edited successfully” and were expected to confer either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.
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main claims, according to a report by the MIT Technology Review in December 2019, which released excerpts from the unpublished manuscripts.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.
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CRISPR/Cas9: a gene-editing tool with promise and peril
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.
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.”
