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“JK Told Me He Was Planning This”: A CRISPR Baby Q&A with Matt Porteus

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come up with a decision. And perhaps I could have reached out for advice to someone more senior who has led study commissions and academies, who understands the sociology of science, and without revealing the confidence, run the situation by them and get their feedback.

David Baltimore’s comment at the summit, that if you hear about something like this, you should tell someone—I’m not sure he’s exactly right. I still believe we need to trust other people on the other side of the table. Trust that one side will behave responsibly, and that the other side will respect confidences. If we lose that, we’ll have lost a lot. On other hand, in medicine we have patient-doctor confidentiality, but it’s also codified that if a patient plans to hurt themselves or others, you have an obligation to disclose. Perhaps this fits that scenario where it’s such an egregious overstepping of bounds that it’s worth violating the unwritten culture. That’s where it would have helped talking with somebody more senior and getting feedback. I needed to do more. In retrospect I wish I had done that.

X: But then what concrete steps could you have taken?

MP: I don’t know. One could be to call reporters and describe to them the situation and let them investigate. Another is to overtly go public and shout it from the mountains. A third option would have been to directly go to people in China: I want you to be aware of a researcher in your country. JK claimed to me he had IRB approval [sign-off from a medical ethics committee]. And he still claims that. It’s not clear if it’s real. To me it was like OK, you have some IRB review, they signed off.

X: Stat is reporting that someone from the He Lab reached out to a University of Pennsylvania researcher about modifying a cholesterol-related gene in embryos. Has anyone else, from He’s lab or otherwise, reached out to you about this kind of work?

MP: No. But I’ve thought a lot about this, and I think if we’re going to deter someone else, a lot of bad press isn’t going to do it. It needs more substantive penalties.

X: Will this lead to more scrutiny of research that uses viable human embryos, even if they are never intended to create a pregnancy?

MP: The Crick Institute’s Kathy Niakan in her session [just before He spoke on Wednesday] highlighted why we need to do this in viable human embryos. [Her presentation showed that editing embryonic DNA, even if the editing hits the right spots, can still cause problems.] The key was, that’s research. It was highly transparent. There was no intention to implant them to create a pregnancy. That’s the line in the sand that got crossed [with He].

X: From what you’ve seen, do you think he actually did it?

MP: My prior probability was that he did it. What I saw on the slides reinforced that these girls’ CCR5 gene has been modified to contain sequences that have never been seen in the human population before. But that doesn’t get in the way for the need of independent assessment.

[Academics in Massachusetts and Australia have posted analysis of He’s data, with concerns that his work, if real, has not matched the natural mutation, known as Delta32, that gives some humans HIV immunity. Instead, they ask whether he has created a new form of the CCR5 protein that has never existed in humans before.]

X: Does verification mean violation of the parents’ and girls’ privacy?

MP: It’s inevitable that one day these girls’ identities will be revealed. There’s too much interest. Nonetheless, a formal investigation doesn’t have to reveal publicly their identity. We have plenty of ways to audit things confidentially.

X: If an audit shows there has indeed been a CCR5 modification, does that necessarily mean that He’s lab did it?

MP: The deletion known to be in the human population is very different than what he created. That’s an easy thing to distinguish.

X: When you were on stage, there were security guards on hand, and Lovell-Badge prefaced He’s presentation by warning the audience to behave. Did it cross your mind that someone could rush the stage, maybe take a swing at this guy? What was the feeling up there?

MP: It was tense, but I didn’t feel there were any physical threats in the auditorium. JK had expressed feeling threatened. We tried to assure him that we weren’t going to tolerate that sort of threat or harassment. The audience behaved quite well.

X: What’s the next step?

MP: One, I hope somatic cell editing [modifying genes that are not passed down to future generations] for research and therapies doesn’t suffer from this. Two, I think we need to give breathing room to the Chinese authorities to investigate in the way they deem most appropriate. I encouraged [He] on stage to be more transparent and to post things so we better understand what happened. And we need a lot more discussion about what happened and how we can prevent it in the future, without preventing the positive aspects of genome editing from reaching patients.

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