China scientist who pushed ethical limits is gene-editing rookie

The little known researcher’s hospital has distances itself from research and asked police to investigate

Scientist He Jiankui shows 'The Human Genome', a book he edited, at his company Direct Genomics in Shenzhen, Guangdong province, China August 4, 2016. Reuters 

The Chinese scientist who ignited a backlash over claims he edited the genes of two newborn girls is a youthful outsider who believes history will be on his side when the dust settles.

He Jiankui, a researcher in the southern Chinese city of Shenzhen, said Monday that he altered the genes of a pair of twin girls while they were embryos to try to make the babies resistant to infection by the virus that causes AIDS.

He, a virtual unknown in the world of gene-editing who crossed the boundaries of the scientific community’s self-imposed ethical lines, will make the project’s data public Wednesday at an international genetics conference in Hong Kong, according to a representative. Before even publishing proof of the results, he faces condemnation from his university, other scientists, and even a government official, who said that any gene editing for fertility purposes was unlawful.“I understand my work will be controversial, but I believe families need this technology, and I’m willing to take the criticism for them,” He said in a video posted Nov. 25 on YouTube.

The scientist, a soccer fan in his mid-thirties who did not respond to requests for comment, used a technology called Crispr, a tool now widely used for the modification of genes in research. He worked almost alone. His research team appears to consist of one other fully-qualified scientist, the embryologist Qin Jinzhou, who conducted the actual gene surgery and in-vitro fertilization, according to the YouTube video.

“We believe ethics are on our side of history,” He said in another video described by ScienceNet.cn, a publication of China Science Daily which is backed by the Chinese Academy of Sciences.

He is based in China, at the Southern University of Science and Technology, or SUSTC, in Shenzhen, but did his graduate and post-graduate training in the U.S. He got a PhD at Rice University in Houston, then did further research work at Stanford University in California from 2011 to 2012 before returning to China, according to his biographical page on SUSTC’s website.

There’s little clue in his background that He would become controversial for a first-in-the-world human experimentation. Mr He’s earlier work in the U.S. was largely theoretical and focused on biophysics and computational genomics, according to published papers and a U.S. researcher who worked with him in the past. Computational genomics involves using powerful computing tools to study large amounts of DNA data, often far removed from clinical medicine.

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One of his first academic papers on Crispr was published in 2010 by a physics journal and focused on a theoretical model of how bacteria use gene-editing to defend themselves. During post-doctoral work at Stanford, his research was far removed from human experimentation and focused on computational genomics, according to the researcher, who described He as bright, ambitious, outgoing and entrepreneurial.

The Southern University of Science and Technology said in a statement on its website that it was “shocked” at the news of Mr He’s actions and that the researcher has been on unpaid leave since February. It didn’t provide details about the reason for the leave.

Harmonicare Medical Holdings Ltd., the Hong Kong-listed operator of the Shenzhen hospital He said he received approval from, said it did not participate in any clinical trial related to gene-edited babies and that the babies were not delivered there. A group of 122 Chinese scientists issued a joint statement decrying Mr He’s actions as “madness” and called for the government to regulate the work.

A Chinese official on Tuesday emphasized at a press briefing that China had outlawed the use of gene-editing for fertility purposes in 2003. It’s unclear what penalties researchers who run afoul of the rules may face. China’s National Health Commission also asked regional authorities to investigate his claim.

He rose to prominence in China by designing fast and cheap gene-sequencing machines through his start-up Direct Genomics, based in Shenzhen. Sina.com, an established Chinese news publication, reported in April that Direct Genomics received 218 million yuan (Dh 115 million) in venture capital funding that month.

Last year, He was awarded a place in China’s prestigious Thousand Talents program -- the government’s scheme to lure back top researchers from overseas with grants and research resources. Interviews and profiles published in recent years in local media reveal a driven, idealistic scientist who switched to biology only in his fourth year of university.

In the videos on YouTube, He outlines what he thinks should be the ethics of the technology, including its use “only for serious disease, never vanity” and “genes do not define you.”

Gene editing “is only meant to help a small number of families. For a few children, early gene surgery may be the only available way to heal an inheritable disease and prevent a lifetime of suffering. We hope you have mercy for them,” He said in one of the YouTube videos.

The videos show an earnest, clean-cut man explaining to the camera how he wanted to help families stricken with the stigma of HIV. He condemned non-medical use of gene-editing tools, saying such uses should be outlawed as they are in the U.S. and other countries.

“Their parents don’t want a designer baby, just child who won’t suffer from a disease which medicine now prevent,” He said. “Gene surgery is and should remain a technology for healing. Enhancing IQ of hair or eye colour isn’t what a loving parent does. That should be banned.”