'Make People Better' explores the ethics around gene editing and 'designer babies'

·6 min read
The gene edited twin girls, nicknamed Lulu and Nana, were born premature at an undisclosed hospital in China (Image courtesy of Hot Docs) (Hot Docs)

In 2018, Chinese scientist Dr. He Jiankui (JK) produced the world’s first genome-edited babies resistant to the AIDS virus. The “designer babies” are at the centre of a new documentary at the Hot Docs 2022 festival, giving us an inside look at what happened.

This film started when filmmaker Cody Sheehy received a call from the documentary’s producer, Samira Kiani, who is an engineer, who started telling him about what was happening in the gene editing field.

“We filmed for two years, met a lot of people in the gene editing field, and that's when we met JK, and the story of these first gene-edited babies happened right in front of our cameras, essentially,” Sheehy explained to Yahoo Canada. “We [had] a front row seat.”

“We knew that, that story was exactly the kind of vehicle we were looking for that would really help people understand what a massive revolution this was going to be. Something that's very personal, something that was very exciting.”

When news hit of the first genome-edited babies there was a media frenzy with significant questions, and concerns, around the ethics of this type of science.

“I think everyone knew, including JK, that when the world learned about the first gene-edited babies that it was going to be controversial, but I don't think that he expected it to be at that level of controversy,” Sheehy said. “A lot of the press became so negative so quickly,...and a lot of people who had worked with JK and supported JK, did not actually stand up and defend him once that criticism started.”

“Instead, they kind of just ran for any exit and the press really ramped up in that absence of scientific credibility of what he had done… This is something that behind closed doors, parts of the scientific community are pushing very hard to do and they needed somebody to break that glass and take those risks.”

One of those people in support is Dr. George Church, a genomic pioneer with Harvard Medical School, MIT, who, among other advancements, believes in gene editing to allow humans to have a "genetic vaccine" against diseases.

For JK, who was heavily influenced by Church, he reached out to the West to tell his story, particularly interested in having this historical exhibit of his work.

“He wanted the nuances of that captured and he knew that in China, it was gonna be heavily censored and he was going to prison,” Sheehy said. “But we had to build that trust and it took, honestly, it took years really to kind of really piece it all together.”

In this picture taken on November 28, 2018, Chinese scientist He Jiankui reacts during a panel discussion after his speech at the Second International Summit on Human Genome Editing in Hong Kong. - A scientist who upended a Hong Kong conference with his claim to have created the world's first genetically-edited babies cancelled a fresh talk and was heavily criticised by organisers on November 29, who labelled him as irresponsible. (Photo by Anthony WALLACE / AFP)        (Photo credit should read ANTHONY WALLACE/AFP via Getty Images)
In this picture taken on November 28, 2018, Chinese scientist He Jiankui reacts during a panel discussion after his speech at the Second International Summit on Human Genome Editing in Hong Kong. - A scientist who upended a Hong Kong conference with his claim to have created the world's first genetically-edited babies cancelled a fresh talk and was heavily criticised by organisers on November 29, who labelled him as irresponsible. (Photo by Anthony WALLACE / AFP) (Photo credit should read ANTHONY WALLACE/AFP via Getty Images)

'People don't know what to believe'

The core tension of the story is built on questions about whether this is a misstep or overstep in science, or if it boils down to a gap in understanding between scientists and the public.

“There's a tension for the scientists because they know that the public doesn't have a nuanced understanding of this and these are important decisions, and so many of them feel like it's best if the scientific community makes these decisions,” Cody Sheehy said. “On the other hand, these decisions are massive, and they're going to affect the public hugely, they're gonna affect how we have children, how we interact with nature,...and there needs to be a period of time where the public can form their own opinion about it.”

“I think in this current age too, with this information, it's harder to close that gap because people don't know what to believe, and this story sounds like it might not be true when you first hear it. So we wanted to make sure the film was just totally credible and when people watch it, they know that this is real. It's not entertainment or science fiction, it's not Marvel, it really is real. I think that's the key thing, and that they can start to process at least in this very small slice of the story.”

Samira Kiani likens this to the Digital Revolution more than 20 years ago.

“When the IT revolution happened many of us wished that we had this conversation about the future, what to build based on the IT technologies,” Kiani said. “We are at the cusp of a genomic revolution, it's very much similar to the IT revolution 20 years ago, so our hope is to use this opportunity to kind of bring the public to the conversation, because it's important.”

“Hopefully together, as all humanity, we will help with shaping the future that the genomic revolution will enable.”

HONG KONG - 2018/11/28: Chinese geneticist He Jiankui of the Southern University of Science and Technology in Shenzhen, China seen speaking during the Second International Summit on Human Genome Editing at the University of Hong Kong.
The Chinese geneticist claims to have altered the genes of the embryo of a pair of twin girls before birth, prompting outcry from scientists of the field. (Photo by S.C. Leung/SOPA Images/LightRocket via Getty Images)
HONG KONG - 2018/11/28: Chinese geneticist He Jiankui of the Southern University of Science and Technology in Shenzhen, China seen speaking during the Second International Summit on Human Genome Editing at the University of Hong Kong. The Chinese geneticist claims to have altered the genes of the embryo of a pair of twin girls before birth, prompting outcry from scientists of the field. (Photo by S.C. Leung/SOPA Images/LightRocket via Getty Images)

'Communities that have a medical need that this technology can really help with'

An emotional depiction of this ethical battle comes from Ryan, titled the PR person for JK’s lab, who has a sister with a genetic disease, chronic regional pain syndrome, often known as the “suicide disease." He had reached out to JK to talk about his sister, who was ready to try experimental treatments.

“His whole life was upended by this event, he's so emotionally connected to it because of his sister and he understands the communities that have a medical need that this technology can really help with,” Cody Sheehy said. “So it represents the best ways that this technology would be used for medical reasons… and to deny that from somebody would be terrible.”

“On the other hand, Ryan also is so conflicted because JK revealed his own nature to be one that was seeking commercial profit and ramping things up to a huge scale that was beyond what Ryan was comfortable with, and I think Ryan found himself in a very difficult position and very emotional one for him.”

As a scientist and researcher, Samira Kiani felt like working on Make People Better was like “school” for her.

“I transformed in the way I do science and I want to practice science,” she said. “I recognize that to fulfill my moral mandate to humanity, I can no longer remain confined within the spaces of my lab, and I need to really be able to do science in a way that is more responsible and responsive to societal needs.”

“There needs to be a blending, there needs to be an integration of how we do science, but also how we ask important societal questions, so we need to define science in a way.”