Science and ethics experts still reeling from #CRISPRbabies fallout

Watching David Baltimore open the #GeneEdit Summit last week brought back a memory of the last time I saw the Nobel laureate in such a role. The 2015 #GeneEditSummit concluded with a Q&A about the summit’s statement — which many considered was a moratorium on gene editing of embryos.

An audience member, with a sense of the promise of the science but concern for buy-in from a distrustful public, asked whether the statement might be translated into clearer language for those hard-pressed to understand CRISPR even with the acronym spelled out for them. To which Baltimore replied: “You mean it isn’t?”

That exchange convinced me that even gene editors need an editor. Especially gene editors. Indeed, if He Jiankui read that 2015 moratorium before he altered his own future in unintended ways, he did not see it as a red light.

In a tweet, director Francis Collins (@NIHdirector) clarified that the National Institutes of Health considers the light red: “The work of Dr. He Jiankui presented at #GeneEditSummit is profoundly disturbing & tramples on ethical norms. We need to develop binding international consensus on limits for this research. #NIH does not support the use of gene-editing in human embryos.”

International reaction to He’s revelation of gene-edited babies and ethical disregard has been intense and often as confusing as clarifying. How to balance “irresponsible” (Baltimore), “disturbing” and “risky” (CRISPR pioneers Jennifer Doudna and Feng Zhang) with this tweet from Antonio Regalado, a reporter for MIT Technology Review, “[H]oly cow Harvard Medical School dean George Daley is making the case, big time, and eloquently, FOR editing embryos, at #geneeditsummit he is says technically we are ‘ready’ for RESPONSIBLE clinic use.”

Who, I wonder, is we?

What follows is something of a select Twitterature review concerning #GeneEditedBabies from the extended scientific and bioethics community — notable to me, in part, for minimal concern expressed for damage to public trust, and the fact that He Jiankiu manipulated the DNA of babies —  but isn’t even a medical doctor.

One Twitter thread was especially clarifying.

Sean Ryder, professor at UMass Medical School (@RyderLab), deserves some sort of award for making the science behind the controversy as accessible as it could be. “This is what really bothers me,” Ryder tweeted. “The children are test subjects for protein variants that haven’t been vetted in animals. Any of the variants could have unintended consequences.” The rest of the thread is well worth reading.

Consequences also were prominent in a dialogue begun by biomedical scientist Paul Knoepfler of UC Davis (@pkoepfler), who took to Twitter with his own confusion: “These 2 images from the #CRISPR baby talk seem to say the exact opposite things about their genotypes.”

Australian geneticist Gaetan Burgio (@GaetanBurgio) responded, and their ensuing dialogue gets at why many feel this science is moving forward too quickly and irresponsibly — mosaic cells that present a major safety hurdle.

Said Burgio: “If you watch Kathy Niakan’s (@theCrick) presentation yesterday at the #GeneEditingSummit mosaicism is even worse than you would think.” (In that presentation, Niakan called He’s work “highly irresponsible, unethical and dangerous.” )

@AndyBiotech noted: “Pretty crazy that Kathy Niakan just showed us some scary ‘on-target complexities’ after #CRISPR-Cas9 cleavage in human embryo: Loss of heterozygosity. Large deletions. Segmental loss or gain in Chromosome. Yet we will hear about actual #CRISPRbabies shortly at #GeneEditSummit

As @AndyBiotech reminded, there are two babies, Nana and Lulu, involved already. “Who will tell the babies they are CRISPRed?” Wondered @GaytanBurgio in a tweet.

@CDUvallet quoted He Jiankui’s response: “I don’t know how to answer that.”

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