Hot Docs ’22: “Make People Better” explores gene editing and ethics of ‘designer babies’

Gleaming skyscrapers reflect the neon lights of a bustling metropolis. A rogue genetic scientist is said to be performing unethical and possibly illegal experiments on human subjects. Shadowy figures who ...
May 5, 2022

Gleaming skyscrapers reflect the neon lights of a bustling metropolis. A rogue genetic scientist is said to be performing unethical and possibly illegal experiments on human subjects. Shadowy figures who might work for a powerful government — or an even more powerful corporation — close in on their prey hiding in an anonymous hotel. It sounds like the stuff of a globe-trotting cyberpunk thriller, but it’s actually the new documentary Make People Better, from filmmaker Cody Sheehy.

The film focuses on Chinese scientist Dr. He Jiankui, who altered the genetic structure of embryos to produce the world’s first genome-edited babies. The controversial experiment, supported by the Chinese government and top U.S. scientists, caused an international uproar. Dr. He was soon “disappeared” (later confirmed to be imprisoned by authorities) and the whereabouts and status of the twin girls whose genes he edited is unknown.

Make People Better features interviews with Dr. He, known as “J.K.”, as well as several leading voices in the scientific community, from scientists and researchers to journalists, and deliberately includes elements of a thriller, plunging the viewer into a world of intrigue – including a primary source who vanished during production, leaving the filmmaking team in a bit of a bind as to how to continue their story.

“We filmed for five years, and the first two years we explored many different branches, because this film could have been about how gene editing can reshape nature, it could have been about biosecurity threats, it could have been about a lot of things,” Sheehy told Realscreen. “But the ‘moon landing’ of genetic engineering really would be the first human babies, and being in the front row seat [for] that, once we are part of that story, it just focused the film to that.”

But when J.K. vanished shortly after revealing his controversial work at a scientific conference, Sheehy says, it forced him and his team to figure it out on the fly.

“It was a very difficult process for sure,” he says. “Partly because we didn’t have access to J.K. for a lot of the filming that we did, and so we had to get pretty creative on how to tell that story. And it required [us] to go back and reshoot things and [put together] several different edits before we got it right.”

Realscreen spoke with Sheehy (pictured left) and producer Samira Kiani (pictured right) ahead of Make People Better‘s world premiere at Hot Docs 2022.

This interview has been edited for brevity and clarity.

cody sheehy - samira kiani

The film feels almost like a sci-fi thriller in parts. How did you achieve that, while also maintaining the integrity of the story as a documentary?

Cody Sheehy: We were very lucky in that. We started working with Antonio Regalado, the journalist [featured in the film], and he kind of gave us a heads-up that, you know, if there’s going to be something that’s going to happen, it’s going to probably happen in China. And so we set up this trip to go to China with him, and it just put us in a position to film things happening in real time. So we were able to really film it as a story, definitely through his part anyway, as it happened to him in real time. So we met J.K. on that trip, we uncovered that the first genetically designed babies were being created by J.K., and we were there [with] a front-row seat. [That was] extremely fortunate, I think, from a filmmaking point of view.

How did you come across the story? Because it’s fascinating, but it’s also very specific. 

Samira Kiani: Well, it started by Cody and I partnering together. I’m a genetic engineer and part of the community, and I was witnessing that these new technologies have this power to revolutionize how we do science or how we can manipulate biology. And I was hearing from our inner circle that there’s a need for broader public engagement, and that’s back in 2017… So I teamed up with Cody through a friend who introduced us early on [and] I discussed with him that I want to make a film that can be engaging enough so that you can attract the broader public.

So we went to China, but we had some connections there in China [that] actually kind of introduced us to J.K. and other scientists who were doing gene editing. We didn’t know that they were doing gene editing in humans, obviously — we were thinking that they were doing it in animals, just for pre-clinical studies. And so we met with J.K. a month before the news was revealed, and from there that ignited Antonio’s curiosity to push further and understand what’s going on with this scientist, and the rest is history.

How did you approach the project, given that it touches on controversial issues ranging from genetic engineering to the involvement of the Chinese government and bureaucracy? 

CS: We hope that this film isn’t coming across with a really strong point of view of what you should believe about anything that’s in it, gene editing or anything else. We wanted it to just feel like you were there, you’re along for the ride, and give you all the information you need to think about some of these really important issues that are going to have profound impacts on your life, [and on] civilization, honestly. We want people to come to their own conclusions about what they think about it, because it has tremendous potential to help people with genetic diseases but it also opens a doorway towards human enhancement and all kinds of commercial and governmental interests around how we can rebuild or reshape populations, towards people’s interests and desires, wherever those might be. It really is the stuff of science fiction.

So, it’s not our place to decide something so important. And also the film lands, I think, at a time before people really have been inundated with a lot of other materials around this, and so we’re lucky enough that people are actually going to be able to make up their minds, hopefully, for the first time [while] watching the film. Whereas many other films, people come to it with a point of view already.

SK: It was very challenging, and Cody put it very well. We wanted to remain really impartial and wanted to help people to make their own decisions. And what I want to add is that this is a story of responsibilities, on many different levels, from different people from different walks of life, and what we hope that people get from this film is at least this question: What is my responsibility? And I think if we achieve that, that is going to be great.

What were the challenges in terms of presenting scientific concepts to the audience in a way that is easy to understand and digestible without bringing the momentum of the film to a halt to explain things?

CS: Samira and I set out from the very beginning to make sure the story did not get bogged down in complicated science, because honestly, this science is changing so quickly right now that it would have been very easy to make it all about [the gene-editing technology] CRISPR, or something like that. But it could very well be the case that this film has a longer shelf life, and can serve as a historical record of this important event.

And then I think it’d be very dated to have it bogged down with an explanation of a certain technology that’s going to be replaced soon by the next one, and then that’s going to be replaced by the next one, and it’s all happening very quickly. So we wanted it to just connect with people and help them understand the power of how the science can transform their lives, and not necessarily explain how it works. Other films, I think, do that better, and we did not attempt to tackle that.

SK: It’s more like the story of how we do science. It is focused on gene editing, but it also ignites broader questions [about] all these technologies that will transform our lives. It’s a question of, as I said, responsibility and the way we do things rather than the science itself. So we didn’t have much [of] a problem with teaching science, because other documentaries, like Human Nature, are more in line with that.

What was it that you were hoping audiences would take from the film? And did that change over the course of making it?

CS: We really want people to experience how quickly this revolution is unfolding in real time, and we want them to be exposed to it honestly, for the first time. I think most people right now, they just hear medical success stories in the news, but they’re not really part of the mainstream conversation about these huge questions that all this opens up, and we really want them to walk out of the theater with their head spinning, thinking, “Oh, wow, there’s more than just, you know, fixing a genetic disease here.” These are not just medical breakthroughs, this is a transformative thing — kind of like how the internet transformed lives, you know, it’s not just about communication, it changed everything. And gene editing is going to do that as well.

That’s what I hoped that people would take from [the film]. And I don’t think that really ever changed: I think we set out to do that and found the right vehicle, the right story to tell that, and hopefully we’re successful in doing it.

SK: In addition to that, I wanted my peers in the scientific community to pause for a second and say to themselves, “Oh, wow, what we don’t say, or we don’t do, has a lot more impact on the next generation who do science, so maybe we should be more careful and responsible in how we guide and train our next generation.” Because it’s not going to be only impacting them, but also impacting society at large.

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