Posted on November 27, 2019

One Year Later, Fate of Chinese Scientist Behind Gene-edited Babies Remains a Mystery

Bryan Meler, National Post, November 27, 2019

Chinese scientist He Jiankui is nowhere to be found amid questions about the gene-edited babies, twin girls called Lula and Nina, he helped create a year ago.

Jiankui hasn’t been seen since January, the Associated Press reports. He disappeared from public after helping create gene-edited embryos, which was reported as a first in the scientific realm.

Jiankui used CRISPR, which is a tool that’s used to change the genetic building blocks of life by subtracting or adding material at various locations in the genomes. In this case, he wanted to use the technology to edit embryos, in order to help children resist AIDS virus infections.

The practice of editing human genes is both illegal in Canada and the United States. But it’s unclear if the practice was illegal in China during the time Jiankui conducted his experiments. Since the international uproar created by his research, China’s health ministry has gone on to issue draft regulations in order to restrict the use of human gene editing.

In an interview with the Associated Press in November 2018, Jiankui reported that he altered embryos for seven couples during their fertility treatment. One of the couples subsequently delivered a set of twins.

Jiankui wanted to try gene editing for HIV, because he believes it’s a problem in China. Through the editing, he looked to disable CCR5, a gene that forms a protein doorway that allows HIV to enter a cell.

A Chinese investigation has confirmed that the couple who have given birth to the twins, also used a second gene-edited embryo for their second pregnancy. All three children will be monitored by government health departments, while Chinese officials have already seized Jiankui’s lab records for the remaining embryos that he edited.

His work has been denounced as both unethical and medically unnecessary because scientists are worried that the DNA changes can be passed on to future generations.

“He caused unintended consequences in these twins,” said Kiran Musunuru, a University of Pennsylvania geneticist. “We don’t know if it’s harming the kids.”

Since Jiankui revealed at a Hong Kong science conference that he used CRISPR for the embryos, many have been calling for a moratorium on similar work. They’ve also been calling for regulations, but committees haven’t been able to make progress in terms of who should be setting the standards, or an understanding of how to enforce them.

Jiankui was last seen on the balcony of a university apartment in January in Shenzhen. It’s the same institution (Southern University of Science and Technology) that fired him because of his work. The Associated Press reports that there were armed guards in the hall, which has led to speculation that he was under house arrest. The AP has been unable to reach Jiankui for comment, while his media relations spokesperson has declined to comment.

William Hurlbut, a Stanford bioethicist, who was in touch with Jiankui early this year, has declined to mention when was exactly the last time they spoke.

Since his last sighting, China’s official news agency reported that an investigation led to the belief that Jiankui acted alone and will be punished for any criminal violations.

But there’s also the questioning of the role played by Michael Deem, who acted as Jiankui’s advisor when he attended Rice University in Houston. Deem’s name is credited in the research paper that Jiankui sent to a journal. Deem is now being investigated by Rice University.

“Many people knew, many people encouraged him. He did not do this in a corner,” Hurlbut said to the Associated Press.

In terms of progress, Musunuru notes that “nothing has changed.” Instead, he believes that they’re in fact father from governing gene-edited babies than they were a year ago. Even though he doesn’t approve of what Jiankui did, Musunuru believes that the demonizing has distracted others from moving forward.

“That’s the story — it’s all cloaked in secrecy, which is not productive for the advance of understanding,” said Hurlbut.

So far, Jiankui’s work hasn’t been published, which would give it an opportunity to be peer-reviewed.

In terms of advancing science, for the time in the U.S. in November 2019, scientists used CRISPR gene editing to fight cancer in three patients.

Gene editing in children and adults appears to be less controversial because the changes won’t be passed on to future generations. It could become more widely accepted if proven to work.

“It’s moving forward slowly because it’s being done responsibly,” Musunuru said.

A poll by the Associated Press and the NORC Center for Public Affairs Research also found that “7 in 10 Americans favor one day using gene-editing technology to prevent an incurable or fatal disease a child otherwise would inherit”. But 7 in 10 are also against using the technology to “alter capabilities such as intelligence or athletic talent, and to alter physical features such as eye color or height.”