The untold story of the ‘circle of trust' behind the world's first gene-edited babies

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The untold story of the ‘circle of trust' behind the world's first gene-edited babies
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He Jiankui has been released from jail after serving a 3-year sentence for creating the world’s first genetically engineered babies. Learn more about what landed him there: LongReads

On 10 June 2017, a sunny and hot Saturday in Shenzhen, China, two couples came to the Southern University of Science and Technology to discuss whether they would participate in a medical experiment that no researcher had ever dared to conduct. The Chinese couples, who were having fertility problems, gathered around a conference table to meet with He Jiankui, a SUSTech biophysicist. Then 33, He had a growing reputation in China as a scientist-entrepreneur but was little known outside the country.

He, who for much of his brief career had specialized in sequencing DNA, offered a potential solution: CRISPR, the genome-editing tool that was revolutionizing biology, could alter a gene in IVF embryos to cripple production of an immune cell surface protein, CCR5, that HIV uses to establish an infection."This technique may be able to produce an IVF baby naturally immunized against AIDS," one consent form read.

Back in Shenzhen, both couples agreed to volunteer. He's study was up and running and would enroll six other couples. It proceeded quietly until the news broke in late November 2018, days before the second international summit on genome editing, in Hong Kong, China, that a couple in the trial had given birth to twin girls who had been edited while embryos.

Some people sharply criticized He when he brought them into the circle; others appear to have welcomed his plans or did nothing. Several went out of their way to distance themselves from He after the furor erupted. For example, the two onlookers in that informed consent meeting were Michael Deem, He's Ph.D.

Scholarships helped He earn an undergraduate physics degree at the University of Science and Technology of China in Hefei, which explicitly modeled itself after Caltech. In 2007, like many top-notch Chinese graduate students, He went to the United States, joining Deem's lab to work on a Ph.D. in biophysics.

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