The scientist at the center of the scandal surrounding the world’s first gene-edited babies has said he moved “too quickly” by going ahead with the procedure.
Jiankui sent shock waves throughout the world of science when he announced in 2018 that he had edited the genes of twin girls, Lulu and Nana, before birth. He was subsequently fired from his university in Shenzhen, received a three-year prison term, and was widely criticized for proceeding with the risky, ethically controversial and medically unjustified procedure with insufficient consent from the families was meant.
Speaking to the Guardian in one of his first interviews since re-emerging publicly last year, he said: “I’ve been thinking about what I’ve done for a long time. To sum it up in one sentence: I did it too fast.”
However, he stopped short of expressing regret or apologizing, saying “I need more time to think about that” and “that’s a complicated issue”.
He declined to elaborate on what he believed should be in place before proceeding with gene editing, but said he would provide further details at an invited talk he is due to give at Oxford University this month. next.
He studied physics in China before moving to the USA to study for a PhD at Rice University and a post-doctorate in genome sequencing at Stanford University. He returned to China in 2012 to pursue research on Crispr-Cas9 gene editing, launching various biotech business ventures.
Gene-edited cells were already beginning to be used in clinical treatments for adults. But genetically modified embryos were – and are – far more controversial from an ethical point of view, as changes are made to every cell in the body and passed on to future generations. Some question whether such a step could be medically justified.
Against this background, he dropped the bombshell at an international conference in Hong Kong four years ago that he had modified two embryos before placing them in their mother’s womb. It later emerged that the third gene-edited child was born.
The edit focused on a gene called CCR5, a pathway used by the HIV virus to enter cells, and was claimed to give the children HIV immunity.
Many expressed surprise at the use of a risky, untested procedure in circumstances where there was no unmet medical need. He pointed to unpublished data for evidence of “off-target” effects, unwanted genetic changes that may increase the risk of heart defects, cancer and developmental problems.
He was found guilty of “illegal medical practices” and sentenced to three years in prison. He declined to say where he served the sentence or give any details about his experience.
He claims he has kept in touch with the twins’ family, but would not say whether he was involved in their clinical follow-up or the last time he saw them. “Lulu and Nana have a normal, peaceful life without being disturbed and we should respect them,” he said. “We respect patient privacy and, for me, I put the happiness of the family first and the discovery of science second.”
When asked how the third child was doing, he replied: “I’m not answering this question,” adding later that the child was “living a normal life living with his parents”.
He seems intent on relaunching his career and has set up a laboratory in Beijing to work on affordable gene therapies for rare diseases such as Duchenne muscular dystrophy. He claims to have secured enough funding through charitable donors to rent lab space, hire five scientists and begin animal studies, and says he will use his personal wealth if necessary to fund the venture. longer.
He is scheduled to give talks at a range of universities and conferences this year, including an online seminar on bioethics next week at the University of Kent and next month’s talk in Oxford, hosted by anthropologist Dr Eben Kirksey. He does not see the scandal as an insurmountable obstacle to running clinical trials again in the future.
“According to Chinese law, when a person has served the prison term [sentence], after which they start again with full rights,” he said. “Compared to the past experience, it’s more important what we do today that determines whether I move forward or not.”
Asked if the last four years were difficult, He said it is better to focus on the future. “I like the Beatles song Let It Be,” he said. “Let’s move on to my new project.”
The possibility of resuming a scientific career in a tangential field might seem plausible but it would not be unprecedented. Hwang Woo-suk, a South Korean scientist, became internationally famous in 2006 after he cloned human heads using eggs donated by his graduate students, but later returned to scientific research on pig cloning and commercial enterprises cloning pets and farm animals.
He might move on, but in his case three children will continue to carry the changes he made to their DNA, with uncertain health consequences.