A new look at the strange case of the first gene-edited babies

A new look at the strange case of the first gene-edited babies

In the four years since an experiment by disgraced scientist He Jiankui resulted in the birth of the first babies with modified genesnumerous articles, books and international commissions have pondered whether and how hereditary genome editing – that is, modifying genes that will be passed on to the next generation – should continue. They reinforced an international consensus that heritable genome editing is premature. Yet the fear remains that some people may go against this consensus and move forward recklessly – just as He Jiankui did.

Some observers – myself included – have characterized him as a thug. However, the new documentary “Make people better,” directed by filmmaker Cody Sheehy, leans toward a different narrative. In his narrative, he was a misguided centerpiece of a larger ecosystem that subtly and implicitly supported rapid advances in gene editing and reproductive technologies. That same system threw him under the bus – and in jail – when it became clear that the global community firmly rejected his experiments.

Creation of ‘CRISPR babies’

“Make People Better” charts an already well-documented saga, tracing He’s path from a promising young scientist at Rice and Stanford to a driven researcher establishing a lab in China who secretly worked to make hereditary genome editing a reality.

He experiments using the CRISPR-Cas9 technique. Sometimes compared to “molecular scissors”, this precision tool allows scientists to make very specific modifications to the DNA of living cells. He used CRISPR to modify the CCR5 gene in human embryos with the aim of conferring immunity to HIV. These embryos were brought to term, resulting in the birth of at at least three children with altered DNA.

The revelation of the births of the first genetically modified babies in November 2018 caused an international outcry. A laundry list ethical lapses in He’s experience soon became clear. There was insufficient evidence that editing embryos with CRISPR was safe enough to be performed in humans. Appropriate regulatory approval had not been obtained. Parental consent was grossly insufficient. And all the effort was shrouded in secrecy.

New context, same story

Three characters play a central role in “Make People Better”’s study of He Jiankui. There’s Antonio Regalado, the MIT Technology Review reporter who broke the original story. There is Ben Hurlbut, an ethicist and confidant of He. And there’s Ryan (the documentary retains his full identity), a public relations representative who worked with He to make gene editing acceptable to the world. He Jiankui himself was not interviewed, although his voice permeates the documentary in previously unreleased Hurlbut recordings.

Regalado and Hurlbut have Already writing A considerable Rising on this saga, so the documentary’s newest contribution comes from Ryan’s discussion of his PR work with He. Ryan seems to be a true believer in He’s vision of literally “making people better” by using gene editing to prevent terrible diseases.

But Ryan is aware that public reaction could torpedo this promising work. Its reference point is the initial public hostility towards GMO foodsand Ryan worked to avoid this outcome by gradually bringing the public into the hereditary gene-editing experiment.

This strategy turned out to be a big mistake for a variety of reasons. He Jiankui himself was eager to publicize his work. Meanwhile, Regalado tenacious journalism led him to a clinical trials registry where he had quietly posted information about the study.

But ultimately, these factors just affected the timing of the reveal. Ryan and He failed to realize that they had very little ability to influence how the experience would be received, or the degree of condemnation that would result.

Blind spots

While some documentaries strive to be flies on the wall, objectivity is elusive. The tone, framing, editing and choice of interview subjects all blend into a narrative with perspective on the subject. A point of view is not objectionable in itself, but it opens the documentary to criticism of its implicit position.

Uncomfortable tension is at the center of “Make People Better.”

On the one hand, the documentary pays substantial attention to Hurlbut and Ryan, who emphasize that he did not act alone. He discussed his plans with dozens of people in China and around the world, whose implicit support was essential both to the experience and to his confidence that he was doing nothing wrong.

On the other hand, the documentary focuses on understanding his background, motivations, and ultimate fate. Other characters who might have influenced him to take a different path fade away – sometimes literally, only appearing seconds before the documentary continues.

Indeed, as a biomedical ethicist, I believe there are good reasons to put the blame for the debacle squarely on his shoulders. Before news broke in 2018, international expert panels had already published advisory statements that inherited gene editing was premature. Individuals like Hurlbut personally advised him. The secret of the experiment itself is a testament: he must have suspected that the international community would reject the experiment if they knew what was going on.

If it had gone through proper and transparent channels – pre-registration of the test and publicly consult international experts on his plans before starting – the whole saga could have been avoided. He has chosen a different, more dangerous and secretive path from the vast majority of researchers working in the field of reproductive biotechnology, which I believe needs to be acknowledged.

The documentary does not criticize its own title. The origin of the phrase “to make people better” is surprising and is the film’s smartest narrative moment, so I’m not going to spoil it. But does inherited gene editing really make people better? Maybe insteadit makes people better.

The genetically modified babies were created through in vitro fertilization specifically as part of He’s experiment. They wouldn’t have existed if he never got involved in gene editing. So, some would say, he didn’t save anyone from getting HIV. On the contrary, it has created new people potentially less susceptible to contracting HIV than the general population.

I contest that does not mean that gene editing is useless. From a population health perspective, gene editing could save lives by reducing the incidence of certain diseases. But this perspective changes the moral tenor of gene editing, perhaps reducing its urgency.

Moreover, editing CCR5 is a dubious way to improve human well-being, as there are already effective ways to prevent HIV infection that are far less risky and uncertain than inherited gene editing. The scientific consensus suggests that the best early human candidates for inherited gene editing are instead devastating genetic disorders that cannot be ameliorated by other means.

The future of He Jiankui

Perhaps due to the timing of its filming, the documentary does not dwell on He being sentenced to three years in Chinese prison following the experience, nor mention that he was released early 2022.

Obviously, He is not content to quietly fade into obscurity. He says he is scheduled in March 2023 for lecture at Oxford University it can shed more light on his motives and actions. In the meantime, he has created a new biotech start-up focused on the development of gene therapies. To be clear, this work does not involve embryo editing.

Still, it seems prison hasn’t diminished his ambition. He pretends that he could develop a cure for the degenerative genetic disease, Duchenne muscular dystrophy – if he receives funding in excess of US$100 million.

For me, this ambition reflects a curious symmetry between Regalado and He in “Make People Better”. Both are determined to be the first, to be at the forefront of their respective fields. Sometimes, like with Regalado, this move can be right – his fearless reporting and publishing instinct quickly ended He’s unethical experiment. But in other cases, like He’s, this will can lead to a dangerous science that ignores ethics and good governance.

So perhaps the best lesson a viewer can take from “Make People Better” is that ambition is a double-edged sword. In the years to come, it will be up to the international community to keep such ambition in check and ensure appropriate restrictions and oversight on inherited genome editing.

This article is republished from The conversation under Creative Commons license. Read it original article.

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