Review: Eben Kirksey, The Mutant Project: Inside the Global Race to Genetically Modify Humans. New York: St. Martin’s Press, 2020.

We cannot choose the life into which we are born. Part of our human trajectory involves coming to terms with our biological and social legacies. It is poignant, then, to witness the efforts of parents risking everything to imbue choice into the genetic lives of their offspring.  It is this human desire, this wish for future generations to have a better life, which is the pivot in Eben Kirksey’s The Mutant Project: Inside the Global Race to Genetically Modify Humans, a sprawling ethnographic case study of the first successful use of CRISPR technology to bring genetically modified human embryos to term.

It is poignant, then, to witness the efforts of parents risking everything to imbue choice into the genetic lives of their offspring.  It is this human desire, this wish for future generations to have a better life, which is the pivot in Eben Kirksey’s “The Mutant Project: Inside the Global Race to Genetically Modify Humans,” a sprawling ethnographic case study of the first successful use of CRISPR technology to bring genetically modified human embryos to term.

I heard about the birth of CRISPR-modified Chinese twin babies in 2018 as many did, in a media report heavy with censure and anxiety. The birth was a scientific milestone quickly buried in the news onslaught of a turbulent time.  Kirksey’s book begins with the moment the story breaks, as prominent scientists gather for the Second International Summit on Human Genome Editing in Hong Kong. He quickly complicates what appears to be a publicity stunt and foreshadows what the rest of the book reveals: that the events of that night are the culmination of events spinning out of control for the doctor, He Jiankui, who is at the centre of the controversy.  The shock of the night is captured in ripples of reaction in the scientific community and public at large, then the event is enlarged, layered, rooted and tentacled in its origins and impact, contextualized, and humanized as Kirksey follows genome-related entrepreneurial, artistic, medical, and activist endeavours across the United States, China, and Indonesia. 

The moral stakes in the messy, too-human world of human genetics are where Kirksey plays to his strengths. The book backtracks to look at He Jiankui’s early life, we meet his relatives, and we learn about the shadowy nationalist, commercial, and intellectual powerbrokers propelling He to his fraught experiment only to leave him twisting in the wind when outrage erupts.  The book jumps to the parallel and precursor story of HIV activists in the US risking their lives, becoming the world’s first genetically modified humans to find a cure for AIDS. Their sacrifices, Kirksey points out, have paved the way for a bio-medical technique for HIV positive adults available only to millionaires (Dr. He’s team then applied similar principles to embryos).  A thoughtful discussion around the first test tube baby historically setting off a moral panic before achieving its current banality in IVF centres offers further context for Frankenbaby controversy.  Gradually, Orientalist notions of the amoral wily Easterner, the Yellow Peril, fade as we understand He Jiankui the man, and see him in the context of fizzling biomedical hype, the ‘disruptive innovations’ of Silicon Valley, barely regulated ‘special medical zones’ where experiments are encouraged, and other scientists happy to continue in his wake, without the heat of being first.  

In the process, we also shift temporally and in our imaginary from one moment of a renegade’s portrayal in the global spotlight, to a detailed description of the team working with him, the months of plodding effort that went into their experiment, the plight of the volunteers they recruit.  How did they choose which gene to edit, to which principles of medical ethics did they adhere, and what did their eventual choice of enabling HIV resistance mean in the heavy HIV stigma and often closeted gay culture of China?  We confront China’s unevenness and contradictions, with skyscrapers and dizzying innovation prioritized over potable drinking water in Shenzhen, the Blade Runner-esque financial, industrial, and technological hub in the south of China.  Like a film negative reverse of the US, in China, financial constraints are not the main barrier to HIV treatment: social pressure instead looms large. HIV treatment is free, but stigma from being HIV positive can mean losing one’s job.  We also see that Dr. He dips into personal funds to support the non-elite volunteers recruited to his clinical trials, unlike the white-privilege-accessible-only HIV experiments in the US.  The tension between the profit motive and accessibility of medical innovation is central to Kirksey’s perspective.

His project begs a number of questions. The future is here, but are we ready?  What will unleashing CRISPR technology on human genetics mean?  Kirksey spotlights Indonesian artist Tamara Pertamina, whose provocative CRISPR sperm bank art installation (made out of a borrowed coconut milk dessert cart) spurs conversation on the imagined deracialized designer babies gene editing technology could herald.  He also interviews and tracks scientists.  Instead of exhibiting Merton-esque disinterestedness, scientists at the cutting edge of genetic experimentation adjudicate sweetheart deals and nationalist fervour.  Science is seemingly poised to play God, intent on intrusive needles puncturing human eggs for a laundry list of “unmet medical needs” despite CRISPR technology’s disturbing lack of precision – more akin to a drone strike with occasional wedding party collateral damage than its vaunted surgical accuracy[1] – and despite not knowing longterm consequences of shifts in permutation of the nucleotide bases G, A, C, and T. How much of the spur to medical innovation arises from the desire to ease pain and suffering, how much from the calling of fame and fortune? 

It is unclear, and perhaps such questions are moot now that genetically modified humans roam the earth. In one chapter we glimpse the cut-throat globalization of medical innovation, where medical tourism could create a plethora of options for the well-heeled and desperate, subsuming ‘safety first science’ under market forces.  In another chapter, a scientist Kirksey interviews argues that our concerns are overwrought: genetically modifying human embryos is invasive and unlikely to be done frivolously, becoming an adjunct option instead in already expensive and risky IVF treatments.  And as the concluding chapter with Donna Haraway’s reflections on her call to ‘make kin, not babies’ suggests, perhaps we are better served when we view genetic mutations with a playful and creative eye rather than an anxious one, as a way to enlarge our instinctive, biological, species-based constructions of clan.

Kirksey weaves human stories and their social worlds in ways that suggest different spaces of immovability and opportunity in life conditions across the globe, suggesting a commonality in struggle despite cultural and governmental difference.  His humane and empathic writing offers understanding and relationship rather than othering, making his book a satisfying read beyond the intellectual content.   As minor notes, I thought it might be useful to acknowledge that the US’ profit-driven healthcare paradigm is an outlier in the developed world.  And while many of his readers following US elections would likely know debates over the US healthcare system, I wondered if more could have been said about the Chinese approach to healthcare and if and how China would be likely to instrumentalize the procedures Dr. He used.  I was also unsure why he or perhaps his publisher reversed the surname-first name order of Chinese names, and anglicized the pseudonyms of the Chinese volunteers.  A final nitpicking comment: Kirksey expressed concern that Dr. He’s volunteer pool were all Han Chinese, but I would have thought that some contextual explanation that China is over 90% ethnically Han, and that only the Han were subject to China’s one-child (now two-child) policy and hence conceivably more desperate for a healthy child would have been appropriate.  It seems to me the lack of ethnic diversity in the Chinese experiment is not equivalent to that of the US HIV experiments against which it was contrast.  These are minor points, however, in an otherwise engrossing, readable, multi-sited hybrid of ethnography and journalism.

Dr. He’s experiment was shut down before he was able to determine if the twins he ushered into the world were HIV resistant.  So we do not, in Kirksey’s account, learn if his project succeeded.  What we do discover, however, is that Dr. He’s story has moved from rags to riches to infamy, and with his three year jail term soon to be completed, his trajectory as a young CRISPR specialist is far from over.  We also gain a fascinating glimpse into the forming of the genetic mutant entrepreneurial industry and its dreams of enabling escape from the ties that bind mortals to their genetic forebears.  These dreams frame the human aspect of the mutant project, where the volunteer couples fearing HIV stigma in Dr. He’s study fight to have modified embryos implanted, at risk to mother and child, in the mother’s womb, and their babies in turn become forever marked, to be observed and chronicled as lone living landmarks in what had been until now a forbidden medico-genetic frontier. 

I found I both wanted to know more about the feelings and thoughts of the volunteer parents blown about by the CRISPR controversy (Kirksey hints that their consent may not have been fully informed), and preferred that they live on in peace, with the hard-won joy and heartache of raising precious children.  Will their children be allowed to procreate, I wondered, and to pass on their mutant genes?  I also found myself thinking that, whatever the creative possibilities of genetic modification, whatever the medical benefits to future generations, Kirksey’s insistence on weighing ethics, access, and profit is justified.  As burgeoning overseas surrogacy industries in areas rich in poor women’s bodies offer cheap pregnancy labour, it is easy to imagine CRISPR technology being wielded at will at existing baby-making hubs, offsetting the risks of genetic manipulation onto global underclasses and making the dystopian vision of Margaret Atwood’s Handmaid’s Tale inch uncomfortably closer.  Using his lens, it becomes clear that it is not mutant babies but our continued elision over extreme inequality that is monstrous, making us as complicit as Shenzhen in drywalling over the crooked and inadequate infrastructure of our world.

Sarah Kamal is a former media reconstruction worker.  She is a graduate student in Science and Technology Studies at the University of British Columbia.

[1]   This point arose during a guest lecture by Eben Kirksey on March 23, 2020, in an online discussion hosted by Hugh Gusterson, author of Drone: Remote control warfare (2016), The MIT Press.