Friday, November 30, 2018

Chinese gene-edited babies have opened up a crack in Pandora's box

Chinese scientist He Jiankui has turned the scientific community upside down in the last few days with his claims that he has secretly edited the DNA of two babies using the CRISPR/Cas9 gene-editing technology, so that they will theoretically grow up immune to the HIV virus.
Initially sceptical of He's claims, most scientists are now convinced that he has in fact created the world's first gene-edited human beings. Scepticism has given way to shock, as He appears to have circumvented all civilized biomedical ethical rules on germ-line editing, and opened up a proverbial Pandora's box. Jennifer Doudna, co-creator of the CRISPR technology, says that she is "horrified" and "disgusted" at the news, and over a hundred Chinese scientists have condemned He's actions in an open letter, referring to his work "conducting direct human experiments". It is also increasingly looking like the work He carried out was amateurish and poorly executed, which, in a case of this significance, is reprehensible.
He himself has only appeared at one scientific conference since his announcement, a Hong Kong conference that turned into more of an interrogation than a genial discussion, with even more openly vitriolic outbursts from some participants just barely reined in. In that appearance, He merely apologized for the way in which news of his work came to light, and defended his decision to go ahead with it, even though it breaks most of the generally-agreed ethical rules and conventions. Since then, He seems to have gone to ground, at least while some of the dust settles.
Apparently, He and his team edited some 31 embryos in total, of which the two twin girls born recently are part, and the status and location of the remainder is far from clear. It seems that only four people actually reviewed the informed consent documents that the seven sets of parents involved in the project signed (they were offered free IVF treament, a clear conflict of interest). Apparently, He paid the medical care and expenses himself, so as not to involve his university or the two companies that he works for.
As one investigator commented, "There was a worrying lack of oversight or scrutiny of his clinical plans ... and a complete lack of transparency throughout the process". It is not at all clear why He decided to go ahead, "despite strong international consensus against such procedures".
So, almost overnight, and long before we are ready, germline genetic modifications have moved from a theoretical case study in a Biomedical Ethics 101 course to an all-too-real-life concern, and the scientific community has that deer-in-the-headlights look.

It too a while, but even China has condemned He's research, calling it illegal, and asserting he did it in search of fame and fortune. Ouch! And he has lost his job at the Southern University of science and Technology in Shenzhen.

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