After the 2017 reunion, he started reading biographies of scientific risk-takers who were ultimately hailed as heroes, from Edward jenner, creator of the first vaccine, to Robert edwards, a pioneer in in vitro fertilization (IVF). In January 2019, he wrote to government investigators: “I firmly believe that what I am doing is promoting the progress of human civilization. History will be on my side.
Thinking back to my notes from the 2017 reunion, I discovered that he had only remembered the first half of this provocative statement. He continued, “What’s going on right now is cowboy science … but that doesn’t mean that’s the best way to go … we should learn a lesson from our story and do better next time. “
Learn from history?
Kevin davies Humanity Edition follows a roundabout path through the remarkably diverse experiments and laboratories where the CRISPR puzzle has been pieced together. The story of the discovery is fascinating, not least because Davies, a geneticist turned editor and writer, skillfully weaves a wealth of detail into a tale that turns pages. The book gives a textured picture of the intersection of academic science with the biotechnology business, exploring the enormous competition, conflict, and capital that have surrounded the commercialization of CRISPR.
However, Davies’ book is heavy on the gene editing business, light on humanity. The narrative emphasizes the arenas of scientific discovery and technological innovation as if they were alone where the future is built.
Humanity first appears as something more than a gene-editing object in the last line of the book: “CRISPR is evolving faster than society can keep up. How far depends on all of us. Yet most of us are missing from the story. True, the book focuses on gene editors and their tools. But for readers already prepared to see science as the engine of progress, and society as recalcitrant and backslid until it eventually “catches up”, this narrative reinforces that consistent myth.
Walter Isaacson The code breaker is even closer to scientific laboratories, according to the personalities behind CRISPR. The main protagonist of his sprawling book is Doudna, but it also introduces the many other personalities, from graduate students to Nobel Laureates, whose work has intersected with his own. In ever admiring and sometimes loving detail, Isaacson chronicles the excitement of discovery, the heat of competition, and the rise of scientific stardom – and, in He’s case, infamy. It’s a fascinating story of rivalry and even pettiness, albeit with huge stakes in the form of price, patents, profits and prestige.
Yet despite all of its details, the book tells a narrow story. It’s a conventional celebration of discovery and invention that sometimes slides into a rather gasping celebrity profile (and gossip). Apart from certain chapters of Isaacson’s rather superficial ruminations on “ethics,” his story repeats the clichés more than it invites reflection and learning. Even people’s portraits feel distorted by its flattering lens.
The only exception is Him, who gets a few chapters as an unwanted intruder. Isaacson makes little effort to understand his origins and motivations. He’s a person with a “sweet personality and a thirst for fame” trying to find his way into an elite club where he has nothing to do. A disaster ensues.
His story ends with a “fair trial” and a prison sentence. Here, Isaacson parrots a state media report, unwittingly playing the propagandist. Official Chinese history was designed to close the He deal and align Chinese science with the culprit rather than the thug.
These heroic science stories take for granted what makes a hero – and a villain. Davies’ account is considerably more thorough and nuanced, but it also goes on to throw stones before trying to understand the sources of the failure – where Project He came from, how one trained at elite American universities might have believed that she would be valued, not doomed, and how he could go this far without realizing how much he had dug himself.
My overwhelming feeling from my conversations with He is that far from “going rogue” he was trying to win a race. Its failure is not to refuse to listen to its scientific elders, but to listen to them too attentively, to accept their encouragement, and to absorb the things said into the inner spaces of science about the direction of the publishing of the genome (and humanity). Things like: CRISPR will save humanity from the burden of disease and infirmity. Scientific progress will prevail as it always has when creative and courageous pioneers push the boundaries. Editing of the germ line genome – embryos, eggs or sperm that will pass the changes on to future generations – is inevitable; the only question is who, when and where.
He heard – and believed in – the messianic promise of the power to edit. As Davies writes, “If fixing a single letter in a human’s genetic code isn’t the coveted chalice of salvation, I don’t know what it is.”
Indeed, as even Isaacson notes, the National Academies had sent out similar signals, leaving the door open to germline engineering for “serious illnesses or conditions.” He Jiankui has come under heavy criticism for making a “medically unnecessary” change – a genetic change he hoped to make babies genetically resistant to HIV. There are, according to critics, easier and safer ways to avoid transmitting the virus. But he believed that the terrible stigma in China against people living with HIV made them a justified target. And academies have given way to this call: “It is important to note that concepts such as ‘reasonable alternatives’ and ‘serious illness or condition’… are necessarily vague. Different societies will interpret these concepts in the context of their diverse historical, cultural and social characteristics. “
Science-centric storytelling implies that science is outside of society, dealing primarily with the pure arenas of nature and knowledge. But this is a false story.
He understood this as an authorization. These are the true origins of his grotesque experience. The image of Him, and of the scientific community in which he was integrated, is a little more ambiguous than the virtuous science of Isaacson’s story. Or rather, it is a more human question, in which knowledge and technical insight are not necessarily accompanied by wisdom and can instead be colored by ambition, greed and myopia. Isaacson does scientists a disservice by portraying them as the creators of the future rather than as people confronted with the awesome power of the tools they created, trying (and, often, failing) to temper promises of progress with the humility to recognize that they are beyond their depth.
Another cost of science-centric storytelling is the way it involves science being outside of society, dealing primarily with the pure arenas of nature and knowledge. But this is a false story. For example, the IVF business activity is a crucial part of the story, yet it receives remarkably little attention in the accounts of Davies and Isaacson. In this regard, their books reflect a deficit in the debates on genome editing. Scientific authorities have tended to proceed as if the world is as governable as a laboratory bench, and as if anyone who thinks rationally thinks like them.
Stories of humanity
These science-centric stories sideline the people on whose behalf the research is being done. Eben Kirksey’s The Mutant project puts these people on stage. His book is also a tour of actors at the frontiers of genome editing, but for him these actors also include patients, activists, artists and academics who engage with disability and disease as lived experiences. and not just like DNA molecules. In Kirksey’s book, questions of justice are entangled with the way stories are told of how bodies should be – and not be. This tears questions of progress from the grip of science and technology.
Like Davies, Kirksey uses the He Affair to frame his story. A seasoned anthropologist, he is at his best at telling people’s stories of what is at stake for them. Some of the book’s most notable interviews are with patients in He Jiankui’s trial, including an HIV-positive healthcare professional who became more deeply involved in the He project after being fired from his job because his HIV status was discovered.
Kirksey’s attention to human beings as more than ingenious bodies, and to the desires that drive the imperative to edit, invites us to recognize the extraordinary danger of accessing the gene editing toolkit for the Salvation.
This peril is too often overshadowed by hasty stories of progress. On the last morning of the Hong Kong Genome Editing Summit, less than 24 hours after presenting his CRISPR-babies experiment, the conference organizing committee issued a statement simultaneously berating him and paving the way for those who would follow his traces. . Behind that statement was a story: a story in which technology advances and society just has to accept and affirm it. A member of that committee explained to Kirksey why they rushed to judgment: “The first person who puts it on paper wins.”
So far, the story of CRISPR has been about running to be the first to write – not just scientific papers, but the nucleotides of the genome and the rules for the human future. The rush to write – and earn – the future leaves little room for learning from models of the past. The stories of the technological future, as fascinating as they are, substitute a thin tale of progress for the richness and fragility of human history.
We need to listen to more and better storytellers. Our common future depends on it.