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More than three years after the now-infamous Chinese scientist He Jiankui sent shockwaves around the globe when he claimed to have created the world’s first CRISPR’d children, much is still unknown, including the twin girls’ current condition, and how their health and well-being will be supported as they grow up.

Here in the U.S., an equally enduring mystery surrounds Michael Deem — the American researcher who appeared to be He’s closest collaborator outside of China. Even as He is expected to be released from prison later this month — after serving three years for conducting an “illegal medical practice” — the full extent of Deem’s involvement in the CRISPR experiment remains a secret, due in part to efforts by his former employer, Rice University, and Deem himself to conceal his role in one of the most controversial chapters in modern medical history.


But STAT has learned that Deem may have been involved more extensively than has previously been reported. During the clinical trial in 2017 and 2018, Deem regularly received data about the research subjects, including sequence data of DNA pulled from the cells of the gene-edited children, according to a source with knowledge of the project.

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