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He Jiankui, known to his international colleagues as JK, is a scientist who was well-respected in the American gene editing community, but pushed the boundaries by gene-editing on an embryo.PHOTO ILLUSTRATION: BRYAN GEE/THE GLOBE AND MAIL. SOURCE: AP Photo/Kin Cheung

Samira Kiani is a professor of genetic engineering at the University of Pittsburgh. She is the co-producer of Make People Better, which premiered at this week at Hot Docs. The views presented are those of the author and do not necessarily represent the views of the University of Pittsburgh. This essay was co-written with journalist Brian Barth.

In October, 2018, I was invited to a secret meeting in Guangzhou, China. I was there because of my work as a genetic scientist who uses the CRISPR technology to cut and splice DNA, an approach to genetic engineering that has come to the forefront over the past decade. I don’t think it’s an overstatement to say that CRISPR, a precise and efficient tool that allows us to “edit” genes, is on the verge of altering the course of human history to an extent far greater than the recent “disruptions” catalyzed by internet technology. If you think digital surveillance tools are frightening in the hands of autocracy, consider the power to bend the human genome to one’s will. CRISPR provides that power. To use another analogy, the ability to edit genes with surgical precision is a scientific discovery on par with nuclear fission – while there may be beneficial applications, it is by nature seductive to our darkest impulses.

Because of CRISPR’s unknown risks, its use has been limited to certain applications by longstanding consensus within the scientific community, and to a lesser extent by regulatory agencies. We’ve experimented extensively in petri dishes and increasingly on live animals. There’s been limited experimentation on human embryos in the lab, but a firm line has been drawn: Edited embryos are not to be implanted in women’s bodies.

The man I met with in the lobby of the Westin hotel in Guangzhou had crossed that line. His name is He Jiankui, and his story has since been told. This is the first time I’m telling my version.

I was in Guangzhou, a hotbed of biotech research, making a film that looks at all sides of this god-like power. I’m as interested in the ethical implications of my work as I am in the technology itself, and have long worked at the intersections of science, art and society. Dr. He, known to his international colleagues as JK, was seeking a messenger, someone who could translate his work to the world in a way that would elicit sympathy, rather than horror. He seemed to think this was his chance.

Needless to say, our meeting changed the course of the film. It also changed the course of his life, and not for the better – he spent the next three years in prison after being convicted of “illegal medical practice.” He was released in April.

For me, the meeting in Guangzhou was a turning point. It clarified something I’d sensed internally for years: The dark sides of technological advancement have roots in the culture of science. I’ve been part of that culture my entire life – my childhood in Iran as the daughter of veterinary scientists; the medical school in Tehran my family pushed me to attend; my postdoctoral work at Massachusetts Institute of Technology with hard-charging CRISPR pioneers; my marriage to a stem cell researcher. If you’re not at the top of your class, publishing in the most prestigious journals, getting the biggest grants and making the biggest breakthroughs, then you’re a nobody. It’s a culture of more, better, faster; of accomplishment at any cost, whether personal or societal. If someone gets hurt, if there’s collateral damage – so what? It’s inevitable in the brutal contact sport of science.

I’ve come to have a measure of empathy for JK because I understand that his choices are a product of the culture of the scientific community, a community that ultimately threw him under the bus rather than face its complicity. My meeting in Guangzhou put me on a path to change that culture. It hasn’t been easy.

Science and the sacred

When JK invited our film crew to the off-the-record meeting, he did not give us the full story. He said he would soon implant edited embryos into human subjects and asked if this was something we’d like to document on film. Turned out he had already done the deed – twins given the pseudonyms Lula and Nana had been born just before we met (this was unearthed shortly after our meeting by the journalist Antonio Regalado, a subject in the documentary who we’d invited to join us at the hotel). When the news broke, the Western scientific community feigned disgust – JK was a rogue, conveniently located in a distant autocracy, who had carried out this horrible project in secret. That narrative could not have been further from the truth.

While I did not personally know him, plenty of scientists in the West did, and he’d openly shared what he was up to with some of them. JK, was a young, highly ambitious scientist. He’d been educated at Stanford and was well-respected in the American gene editing community. He aimed high in his career, as in Nobel laureate-level. Nuclear fission-scale discoveries are what win Nobel Prizes – never mind what happens with the technology later. He knew that the birth of gene edited human babies would shock the world; it was a calculated risk, in which he hoped the shock would subside into acceptance. He imagined that history would eventually celebrate him as “the first.”

JK’s colleagues did not call him out before the news leaked because what he was doing, while considered taboo by society at large, is seen as an inevitability among CRISPR scientists. The fact that we edit human embryos at all should make it obvious that implanting those embryos is the anticipated next step. It is less scientific knowledge holding back the industry than social licence and regulatory environment.

The culture of science was pushing JK forward. Like me and many of my colleagues, he wanted to change the world for the better, and he understood that this did not happen by colouring within the lines. It requires pushing boundaries – the question is which ones you push. The answers, I believe, should come not from a sense of competition with the guy next to you on the lab bench, but from the broadest possible cross-section of human communities. The culture of science is like a vacuum – perhaps because we know the general public often does not understand what we do, we don’t feel like we’re obligated to explain ourselves, much less to elicit input from beyond our silo walls. Integrating input from diverse perspectives is, for many scientists, a foreign concept, something that would divert from one’s goals and slow the process of discovery. There’s truth in that, but I think it would redirect scientific goals to be more in alignment with human needs. Moving slower and not breaking things has its upsides.

Pushing boundaries is essential to human achievement, but the harder the push, the greater the responsibility. At a minimum, you need consent from those involved, which is why editing the DNA of a human embryo is an ethical abyss: Unborn children cannot give consent. In any matter related to public health, there must also be some form of collective consensus about the risks involved – and when it comes to the integrity of the human gene pool, the bar couldn’t be higher.

In JK’s case, he deluded himself into thinking he had consensus to proceed with his experiment. During our meeting, he showed me the results of public opinion surveys indicating relatively strong support for gene editing in China. He had also obtained ethics approval from the medical institution involved in the project (Chinese authorities later claimed the approval was fraudulent). He was also banking on support for the specifics of the experiment – to make Lulu and Nana genetically immune to HIV. While there’s an obvious selling point for the public there, we have other tried and true methods at our disposal for controlling the spread of HIV. What the layperson would not realize, however, is that his choice in which genes to work with was also a matter of scientific expediency, as the mutation associated with HIV resistance, known as CCR5-delta 32, has been intensely studied and thus represents a low barrier to entry for someone wanting to feel reasonably confident that nothing will go awry when they start editing embryos.

Nonetheless, the experiment did not go as planned. We inherit a pair of each gene that comprises our genome (one from our mother and one from our father), but one of the twin’s embryos came out “half-edited,” meaning the intended change happened only on the copy from one parent. Second, he was unable to confirm that the genetic changes made in the embryos resulted in immunity to HIV. The fact that JK chose to implant the embryos anyway – he claimed this was in part because the parents urged him to – is a core ethical lapse largely overlooked in press reports.

JK had tacit support from the Chinese government for his work, but when the situation became suddenly scandalous in late 2018, they turned on him, just like his colleagues. Even if they’d stood by him, I don’t believe the approval of a single jurisdiction has any relevance when it comes our shared genome, which transcends national borders. In my mind, to alter genes that will be passed down from generation to generation is a sacred act. Placing responsibility for it in the hands of regulatory agencies is to deny the full power and meaning of it. If we choose this path through a truly responsible process – a big if – there would be no need for the scientists involved to feel like they need to hide what they’re doing. They would be vaunted in the temples of the world.

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Still from the film Make People Better, directed by Cody Sheehy and produced by author Samira Kiani shows the gene edited twin girls, nicknamed Lulu and Nana, who were born at an undisclosed hospital in China.COURTESY HOTDOCS AND Getty Images

Where to draw the lines

I am by no means against gene editing – it is my passion and livelihood. It has potential to cure our most intractable diseases and possibly address some of our most pressing environmental issues. Part of the promise of CRISPR is safety: Because it is so precise, the risk of unintended negative outcomes is much smaller and easier to mitigate than the previous generation of genetic engineering tools. We have conclusive evidence regarding safety for many applications of CRISPR technology. But this is not universally the case.

My own research involves somatic gene editing, a therapeutic application of CRISPR administered by injection to consenting subjects. JK, and a small number of other scientists, have experimented with germline editing, in which changes are made to the DNA of an embryo. There’s a huge difference: With somatic gene editing, the altered genetic traits cannot be passed to future generations, but with germline they can, permanently releasing those new traits into the gene pool. This makes germline far riskier.

We simply do not know the biological implications of human germline editing, and can’t fully know them without waiting 80 years to see how an embryos altered genome plays out over the course of a lifetime. The culture of science is not equipped with that sort of patience. The social and political implications of gene editing are also huge unknowns, and unfortunately there’s been scant debate among policy makers and the general public. Within the small, insular world of CRISPR researchers, it is assumed that work similar to JK’s is under way, most likely in privately funded labs, or in countries where the idea of engineering humans for morally questionable reasons – think designer babies and superhuman soldiers – could be viewed not as taboo, but as politically and economically desirable.

At this point, we have little ability to anticipate the unintended negative consequences that might result from germline editing, but such uncertainties have not stopped the forces of hubris in the past. Nor have they stopped the forces of capital. I expect that human genetic engineering, both therapeutic and “vanity” applications, will become an unfathomably profitable industry in the coming decades. I am open to the possibility that germline editing could be ethically applied in narrowly defined arenas of public health. But the determination of where to draw the lines should not be left up to venture capitalists and self-centred founders, as it was to a large extent with the IT industry. They are already salivating.

In many ways, the present state of gene editing technologies resembles that of internet technologies 25 years ago – on the cusp of changing the world, but still obscured behind closed doors. Many of us now wish that we’d better understood the implications of those technologies then. If there’s any hope of the biotech industry of the future having a moral, equitable and inclusive basis, the rules of engagement need to be determined now.

Science EQ

How do we catalyze a meaningful public debate before it’s too late? First, the public needs to better understand how theses technologies work and what the implications are. I believe communicating that should be part of the job description for all scientists. Second, scientists need to approach their work with a more holistic lens. The scientific method is by nature reductive, but we need not be reductive in deciding how to apply it and which paths of inquiry to pursue.

I have profound respect for the intellect and integrity of my colleagues. But I see a direct link between a difficulty with introspection – or perhaps unwillingness, I’m not sure which – and the ethical shortcomings of my community. I often wonder how our discoveries, and the world that they foster, would look if EQ was valued as much as IQ. I’m not saying individual scientists lack emotional intelligence in their personal lives, but on a collective level we do. It’s evident in how we practise our work and in our relationship with society at large. Pushing one’s way to the front of the line is not a sign of high EQ. But that’s the culture of science. Ignoring what other people feel because it does not align with our needs or desires does not make for good relationships. But it makes for a successful scientist.

I don’t have all the answers. But I’m trying to transform the tiny domains where I have influence. I’m developing a virtual museum to help educate the public about gene editing, highlighting both the benefits and the dangers. I’m producing films and theatre that ask the hard questions about boundary-pushing innovations – not just genetic engineering, but others on the verge of altering human history, such as AI and brain-machine interfaces – in entertaining and unexpected ways. I am also one of the co-creators of Our Future Life, a global storytelling initiative aimed at breaking down barriers to dialogue around the biggest questions facing humanity. The common thread in all these is to engage the public imagination and encourage deep reflection. Perhaps most importantly, I work on a daily basis to instill these perspectives in my students. Believe me, it is an uphill battle.

When I was invited recently to give a guest lecture for a colleague’s class on epigenetics, I decided to use the opportunity to facilitate a discussion about who the students are as scientists, rather than giving a dry talk on theory and technique. A month later, the professor who’d invited me informed that I’d received horrible reviews in the class evaluations. My presentation was “not pertinent to the material,” one student wrote. I couldn’t disagree more.

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