Scientist who illegally gene edited children released from prison

He Jiankui has plans to gene edit again

The geneticist who created the first gene-edited human babies was released from prison late in 2022.  

History was made in 2018 when Chinese geneticist He Jiankui surprised an international genetics conference with his announcement that three gene-edited humans had been born. Jiankui’s actions were quickly condemned by many at the conference and soon by academics worldwide. Shortly after, Jiankui mysteriously disappeared.  

Nearly a full year later, Jiankui reappeared in Chinese courts, charged with illegal medical practices alongside two collaborators. One day before the world would learn of an outbreak of pneumonia in Wuhan caused by an unknown virus, Jiankui was sent to a Chinese prison.  

While we have learned much about that novel coronavirus in the last three years, the full extent of what Jiankui did is still unknown. Though, most experts agree the CRISPR technique described by Jiankui is not safe for use on human embryos. Three years later, there is still no information from a third party on the children’s condition. 

The only information released about Jiankui’s experiment, outside of the scientist himself, is his trial by the Chinese government, which found him guilty of illegal medical practice but released little other information due to concern over the children’s anonymity. 

While he was not charged with breaking informed consent, some bioethicists have called into question the adequacy of the informed consent that the parents received. In a January 2020 editorial in the Journal of Bioethical Inquiry, Dr. David Shaw analyzed the informed consent documents used in the experiment and found notable omissions from the documents. Shaw concluded “the participants in this study were clearly misinformed about the study’s purpose, as well as being subjected to considerable pressure (via free IVF) to take part.” 

It is known from Jiankui’s original conference talk that he edited a gene known as CCR5. The change he made in the gene confers immunity to the most common variant of Human Immunodeficiency Virus (HIV).  

Jiankui claims that the edited children had a father who was an HIV carrier and that the gene editing was meant to prevent the children from accidentally becoming infected by their parent. 

According to the Pennsylvania State University medicine department, when a father is on antiretroviral drugs, the risk of infection to the child is only 0.16 out of 10,000 and additional safety measures can reduce the risk further. Given the minimal benefits for the child, some have looked to other factors as motivators for the gene editing. 

HIV also carries a severe social stigma, and some have pointed to the stigma as a motivator behind the gene editing. Commenting on Jiankui’s manuscript of his experiment in the MIT Technology Review, Jeanne O’Brien asked “Did the study provide a genetic treatment for a social problem?” 

Previous research has also found the change Jiankui made to the CCR5 gene significantly improved the intelligence of mice. While Jiankui denied using the gene editing to improve intelligence, he did admit to being aware of the mice studies on CCR5 that showed increased intelligence.  

While much of the information from Jiankui’s trial is secret, it was announced that he forged ethical documents and misled the doctors who performed the in-vitro fertilization.  

Three years after all these questions were raised, COVID-19 continues to plague us, and Jiankui is out of prison and released into the world again. 

Upon release from prison, Jiankui started a new biotech firm. Its aim is to cure Duchenne Muscular Dystrophy (DMD) in humans through gene editing.  

Since his release, Jiankui has given several talks about human gene editing at international conferences, though has refused to speak on his previous actions. He’s even posted his talk about how CRISPR gene editing makes human lives better to TikTok.  

In 2018, when Jiankui first presented his work on the gene-edited babies, he defended it saying he was “proud” of his work. In 2023, Jiankui told reporters with the Guardian that he “acted too quickly,” though, even when asked directly, stopped short of apologizing for his work. 

It was reported on February 21 that Jiankui lied on a visa application to Hong Kong and had it revoked. He is now the subject of a criminal investigation by Hong Kong authorities.  

On February 20, he posted an outline of his plan to cure DMD for approval from an ethics committee. It follows a similar path to his previous attempt at gene editing. Like before, his plan involves mouse and monkey trials before moving onto human trials. The final planned stage is a phase II/III clinical trial with 50 DMD patients. However, there is no evidence in the plan to edit embryos. Based on a proposal Jiankui has released, he plans to use Adeno-Associated Virus (AAV) as a carrier for CRISPR which will target the gene that causes DMD. The previous experiment involved directly inserting CRISPR into human embryos.  

AAV is a group of viruses that are common in the human population and are generally thought to be harmless. Previous research on gene editing has posited using AAV as a capsule to transport CRISPR into cells. The advantage of the approach is that a solution of CRISPR inside of AAV could be injected into a person with only a needle and the AAV would get CRISPR safely into a person’s cells where it would then release it.  

On February 11, Jiankui posted on Twitter a picture of himself with two DMD patients, saying “with gene therapy, 3-year-old DMD kids should be able to live an almost normal, full life in future.” 

Jiankui deleted all of his Twitter posts detailing his plans for DMD by February 23. No statement was released on why he deleted the information, though it came shortly after his story began picking up media attention. 

Jiankui’s plan for DMD also seems to be building off a famous 2015 experiment wherein mice with DMD were injected with AAV carrying CRISPR and had significant positive changes in their health.  

The DMD therapy that Jiankui plans to develop is more in line with other gene editing clinical trials around the world. For example, there are currently clinical trials that use CRISPR to cure sickle cell anemia and a form of vision loss known as Leber’s Congenital Amaurosis. Unlike Jiankui’s 2018 experiment, these clinical trials do not gene edit embryos, and aim to cure a condition the patient already has. The clinical trials also only target certain cell types and tissues for gene editing rather than making changes to the entire person, meaning that genetic changes would likely not be passed on to offspring.  

Much has changed since December 30, 2019. A novel coronavirus became endemic. Has human gene editing become endemic as well?