7. feb. 2023 17:50 – Updated 7 Feb. 2023 18:07
Chinese geneticist He Jiankui shocked the research world when he announced in 2018 that he had gene-edited the DNA of twins Lulu and Nana. Since then he was condemned and had to go to prison.
“Irresponsible”, “dangerous”, “deeply appalling”, “foolish”, “an ethical mess” and “not morally or ethically defensible”.
The reactions from the research community worldwide were probably not quite what researcher He Jiankui envisioned after he announced that his research team had gene-edited the DNA of the twins Lala and Nana. The news came as a bomb in the run-up to a conference in Hong Kong in 2018.
– We can only use the word madness to describe this experiment which has been carried out on humansmore than 120 Chinese researchers wrote in a open letter after the news came out.
Background:Researchers crack down on colleague who claims to have gene-edited twins
– Went too fast
He then said that he was proud to have managed to change the genetic material of two twin girls with an HIV-positive father. The twins’ genetic material must have been edited before they were born. The aim was to make them resistant to the HIV virus.
– No genes other than those that prevent HIV infection were changed. The girls are as safe and healthy as other babies, He claimed.
CRISPR can be used to edit the genes of a fertilized egg. (Illustration: Lightspring / Shutterstock / NTB)
– I went too fast, he says now South China Morning Post. He specifies that he learned a lot from the experience and has made several changes during the last four years.
The technology used is called CRISPR, and makes it possible to cut out genes from our genetic material to replace them with others. The following year, another Chinese baby was born with modified genes: Amy.
The parents joined voluntarily – the university did not know
There were seven couples who voluntarily participated in the study and according to He, all were informed about the risks. However, those who were not informed were the university he worked at. He claimed he had financed most of the study himself. Chinese authorities launched an investigation and in 2019 he was sentenced to three years in prison for practicing illegal medicine.
In April 2022, he was released and is today back in the lab. When asked if he would do something differently if given the same opportunity again, he draws on the answer.
– That question is too complex and I have no answer.
– Respect the children
So what about the gene-edited children?
– They have a normal, peaceful and undisturbed life. This is their wish and we should respect it, says the researcher.
The research team had committed to purchasing extended health insurance for the children, but after it became known what they had been involved in, no insurance companies would be involved. He therefore now hopes to set up a fund to collect money for health-related expenses the children may have to incur.
Created new laboratory
As for his own further research career, he has started a new laboratory in Beijing to work on gene therapy for rare genetic diseases, such as Duchenne muscular dystrophy, a severe, rare and progressive muscle disease that almost exclusively affects boys.
– I have a long-term vision that each of us should be free from inherited diseases.