In May of 2017, Samira Kiani found herself in a San Diego hotel ballroom surrounded by some of the CRISPR field’s brightest shining stars. Jennifer Doudna, George Church, and others were all there at the behest of the Defense Advanced Research Projects Agency to talk about gene drives — a CRISPR-enabled technology that forces a genetic trait through a population at evolutionary warp speed — and what they as scientists could do to build guardrails around them. Later that summer, DARPA would devote $65 million to funding some of these efforts, through its Safe Genes program.
Kiani, a geneticist at the Arizona State University who had worked with Church to advance CRISPR-based genetic circuits while a postdoc at the Massachusetts Institute of Technology, was relieved to see such standout scientists taking the safety and controllability of these technologies seriously. But as the months went by, she realized that the labor they were doing was largely confined to their laboratories. Although talk that day in May had centered around the need for societies to be informed about how fast this science was moving, no one was doing the work of starting a public dialogue.
So in November of that year, she called up filmmaker Cody Sheehy, and they started talking about making a documentary together. “Very early on we wanted to make a film that would tell the story of the humans behind the work, and not science itself,” said Kiani. She used her connections in the world of gene editing to find a few interesting subjects to follow; they included Church and MIT Technology Review reporter Antonio Regalado. Filming began before the year was out.
Which is how their movie, which was going to be about the characters driving the gene editing revolution more broadly and originally titled “Code of the Wild,” became a ride-along on the most explosive science story of the 21st century: the CRISPR babies scandal. That film, “Make People Better,” is out Tuesday and available for streaming on iTunes, Prime Video, and elsewhere.
With never-before-seen footage, audio recordings, and interviews with key participants, it casts doubt on the dominant narrative of Chinese scientist He Jiankui as a “rogue” actor, which emerged in the wake of revelations that he had conducted experiments that led to the birth of the first humans with intentionally manipulated genomes. It focuses instead on the forces in China and within the global scientific community that shaped He’s ultimately disastrous ambitions, forces that the film shows to very much still be at work in the world.
STAT spoke to Sheehy and Kiani about their portrayal of He, and why they think his story is such an important one to try to understand, now more than ever. The interview has been lightly edited for clarity and length.
When you started this project, where did you expect to land in terms of a story to focus on?
Sheehy: I have been making films for a long time about science and I thought I was pretty well-versed in what was happening. But when I started having these conversations with Samira, it became apparent that I was actually really in the dark. There was a huge gap between what I thought I knew and where things really were. It revealed to me that this genomic revolution was underway and no one was talking about it. So our original mission was really just to make sure the public understood how fast things were moving because this gap was widening.
Kiani: There were a few people that I knew from my connections that I knew would be very influential. So we started with George Church. And when we went to talk to him in Boston we got connected to Antonio Regalado at MIT Tech Review and we decided we wanted to follow these people.
Sheehy: But then as we got to know Antonio, he kept telling us over and over that there’s probably going to be genetically engineered babies very soon and it’s probably going to happen in China. So as we closed in on that idea we decided to go to China to investigate — traveling with George first and then Antonio. And it was there that one of Samira’s connections from way back, Ryan, called us up.
This is Ryan Farrell, who was hired by JK [He Jiankui] as a public relations specialist to handle the rollout of his human germline editing project. How had you made that connection?
Kiani: We had been in communication with Ryan before he moved to China because he was working for Sangamo and we had connected with him to film a Sangamo patient who received one of the company’s zinc-finger-based editing treatments. That didn’t wind up panning out, but we stayed connected.
Sheehy: So when Ryan called we were actually in Shenzhen. It was such a crazy coincidence that we were both in China. He had someone he wanted us to meet. It was JK, so he set up a meeting and that’s how we met him for the very first time.
Kiani: We told him that we had Antonio Regalado with us, is it okay to bring him to the meeting. In retrospect, he may not have been so happy with that.
At that point, did you get a sense for what JK was up to?
Sheehy: We didn’t know what the meeting was about. He wound up talking to us about a survey he was releasing at that time to get a sense for how the Chinese public felt about genetically modified babies. We didn’t film the meeting. But we did film a conversation with Antonio right after. And watching that footage now, you can see that he totally understood at that point that JK is the one who will do the first CRISPR babies. We didn’t have any evidence at that point. But the moment Antonio met him, he just knew that was the guy.
When Antonio did find enough evidence of JK’s experiments to publish a story, the narrative that very quickly took hold was one of a rogue scientist operating alone and in secret. How did that resonate with you at the time, and how do you think being on the ground in the lead-up to the media frenzy that followed provided you with a different lens on these events?
Sheehy: It’s interesting because we didn’t know the full story at that time either. We knew JK was probably the one but we had no idea of the deep support he had in the U.S. and in China. Up until then, it did seem like a pretty clandestine operation that he was running. The rogue narrative in many ways had already been in the popular media going back to 2015 when Junjiu Huang used CRISPR to edit the first human embryos. So that narrative was kind of preloaded in a way.
And Antonio releasing his story on the eve of that international summit really maximized the international public spectacle. Once that happened, the scientists that JK had been conversing with in-depth over the course of his research, that fear of the media just sent everybody running for the exits. And a very human dynamic unfolded. I don’t know that we truly understood it at the time. But looking back I think we could see a different way the story could have unfolded.
It’s notable that very few, if any, of these scientists who spoke to JK, consulted him along the way, appear in your film. Did you try to speak with them?
Sheehy: Absolutely we did. And ultimately they did not want to participate.
You spend a lot of time examining how JK’s support evaporates after he disclosed data from his experiments at the 2018 human genome editing summit. How did your experience of this gene-editing world shape your portrayal of him as a scapegoat?
Kiani: Well one thing I want to say is that the cultural and language barrier is playing a role. JK was getting advice from American scientists, but was interpreting them in light of his own social, cultural background. So we have to do better as a scientific community to acknowledge these different realities.
But I was really surprised and distressed, honestly, that he was scapegoated and put in prison without the opportunity to explain himself. From the moment I saw the reactions from the summit, my gut feeling was telling me that this is not the right way of treating this kind of situation, because the result is the scientific community shoving all these things under the rug. But they won’t stop. They’ll continue on, just underground. We’re taking away an opportunity for an honest and transparent dialogue by acting like that.
And you know, when we talked to JK last week, it became apparent that basically hasn’t changed. Putting a person in jail for three years doesn’t do anything in terms of changing their perspective.
You spoke to him last week?
Sheehy: We’ve talked to him a few times since he got out of prison. We wanted to give him an opportunity to participate in a podcast we’re working on, which is a sort of a “Where is everybody now?” follow-up.
Is he going to be on it?
Sheehy: He has not agreed at this time. It’s possible but not confirmed.
I reported recently that he’s been mounting a bit of a comeback. What is the sense you’ve gotten in your conversations with him about his willingness to have open, honest conversations about the CRISPR experiments?
Sheehy: He does not want to talk about the incident at all. He truly just wants to focus on his new business and his new projects. This film brings attention to that part of his life that led to him being imprisoned. And so while he hasn’t told us yet what he thinks about it, I’m guessing there are some things in there that would make him very nervous.
Much of the filming took place between the end of 2017 and 2019. How much did the Chinese government limit your ability to tell certain aspects of this story?
Kiani: Well, as far as the babies go, we made a conscious choice as a team not to pursue that because of the ethical questions. We didn’t want to put them in danger.
Sheehy: For us to get access to the Chinese gene-editing labs, which is pretty rare for a Western camera crew to get, it helped to be traveling with George Church. During the filming we didn’t advertise our presence, but we did interview a lot of people, so I’m sure the Communist government was aware of what we were doing. And we do believe that at one point while we were there our computer systems got hacked. And so probably a lot of the footage was reviewed, but we didn’t have the JK story at that point. After the scandal broke, that’s when China really started to censor the story, but we were already safely back in the U.S. by that point. I probably will not be going back to China for the foreseeable future, because it is a very sensitive story there, and one that they want to go away.
How has that impacted your process? Was there ever a moment where you wavered on following through with the film because of threats or other pushback?
Sheehy: Not physical threats, but there is an implicit threat. The chilling effect going on with media in China is very real. The way we experienced it is when our amazing executive producer, Geralyn White Dreyfous, who raises money for about 70 films a year, discovered our project. And with her, who is a big name in the field, it should have been no problem to finance it, but no one wanted to. Nobody wanted to put money into this because of all the business ties in China. Geralyn actually funded it herself and later on Random Good Films also came in and took a big risk to fund the rest of it.
The other thing is for a film to be sold, you need to insure it. Typically if it’s made well and done right that’s not a problem for an experienced team, which we had. But nobody wanted to insure it because they weren’t sure what would happen because of the China aspect. Took convincing a company to take a risk with us. A similar thing happened when it came to selling the film. It took an inordinate amount of time to sign a deal, even as it was being accepted at major festivals. We never heard this directly, but based on our past experience we wondered if perhaps some of the big distributors were worried about other films and how they might not get permission to be shown in China just because they were associated with this documentary.