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'Deeply disturbing' baby gene-editing trial stopped

A scientist who upended Hong Kong conference with his claim to have created the world's first genetically-edited babies canceled to fresh talk. Picture: AP Photo / Kin Cheung

Hong Kong, China – A scientist who upended the Hong Kong conference with his claim to have created the world's first genetically-edited babies canceled a fresh talk and was heavily criticized by organizers Thursday, who labeled him as irresponsible.

He Jiankui told a packed biomedical conference Wednesday he was "proud" to have successfully altered the DNA of twin girls born to an HIV-positive father, an apparent medical breakthrough.

But details of the experiment, which has not been independently verified, triggered an immediate backlash and He said the trial had been stopped.

He was supposed to speak at the summit again Thursday but disappeared from the schedule.

David Baltimore, a Nobel laureate and chairman of the organizing committee, told reporters it was He's decision not to attend.

Organizers of the Second International Summit on Human Genome Editing denounced He's "unexpected and deeply disturbing" claiming that human embryos had been edited and implanted, and called for closer supervision of the field at the conclusion of the conference Thursday.

"Even if the modifications are verified, the procedure was irresponsible and failed to conform with international norms," ​​they said in a statement.

"Its flaws include an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review and conduct of clinical procedures," he added.

University professor He, based in the southern Chinese city of Shenzhen, said the twin girls, born a few weeks ago, had their DNA altered to prevent them from contracting HIV. Eight volunteer couples – HIV-positive fathers and HIV-negative mothers – signed up to the trial, with one dropping out before it was paused.

He said there was another "potential pregnancy" involving a second couple, but it is unclear whether that pregnancy is still ongoing.

Experts warned that editing human embryos can create unintended mutations in other areas – so-called "off-target effects" – which can have an impact through the lifetime.

Southern University of Science and Technology distanced itself from He, saying he had been on unpaid leave since February and had "seriously violated academic ethics."

He, who was educated at Stanford University, said the twins' DNA was modified using CRISPR, a technique that allows scientists to remove and replace a strand with pinpoint precision.

Co-creator of the technology Jennifer Doudna said she was "horrified" at hearing. He's talk, adding she felt deeply concerned about the people affected and questioned whether they really understood the procedure.

Summit organizers said germline genome editing could become "acceptable" in future if rigorous criteria are met, including "strict independent oversight."

However, they added that there were too many scientific and technical uncertainties to allow clinical trials at this stage.



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