The Health Race
• Photo from Genetics Gym by Adam Peacock
Words by Hollen Singleton
Photos from Genetics Gym by Adam Peacock
This story was originally published in Issue 3.
From biohacking and genome sequencing to human-animal chimeras, the health race is well and truly underway. The question is, where will it end?
In October 2017, biohacker and former NASA scientist Josiah Zayner released a YouTube video of him injecting himself with a technology called CRISPR-Cas9 – the first known direct attempt at gene editing.
It’s a name on every science enthusiast’s lips: CRISPR. This fresh-sounding technique has enjoyed a fair slice of public attention as a gamechanger in the realm of gene editing. In brief, CRISPR refers to a cut being made into DNA. As that DNA scrambles to repair itself, ‘guide DNA’ is inserted so that the edit made is a selected one, rather than natural. Genetic material can literally be cut out and replaced. As a modular technique, it is broadly and easily applicable across the genome and across species. The work can be done in petri dishes, but also injected into organisms. This means a living being can be altered on a genetic level.
This is what Zayner attempted in 2017. The purpose of his gene cocktail? He designed the self-administered therapy to promote musculature in his arms. In the pursuit of Channing Tatum pythons, Zayner set off a wave of controversy in a domain already riddled with scandal and potential threat.
The ability to alter the human genome raises the spectre of obsolescence. If the human body and mind is treated as a technology, something to be encoded and evolved at will, which traits might we exaggerate, and which might we lose? As we refine our editing techniques, an increasing number of films, fiction and works of art have shown the hubris of playing god with the human body. In Science Gallery Melbourne’s 2018 Perfection exhibition, Adam Peacock’s Genetics Gym depicted one such perspective on bioengineering. The fluorescent installation displayed photographs of four human bodies, photoshopped into unreal shapes. The idea behind the work is relatively simple: what might human beings do with their bodies if their flesh were up for design? The altered bodies are presented as dystopic and homogenous despite their absurdity. Their different shapes represent an adherence to superficial trends that reduce their choice of body to a whim of fashion. The models in Genetics Gym demonstrate a lack of restraint, a lack of meaningfulness in their bodily autonomy. Their excess makes them monstrous.
This, then, is the fear that gathers the most noise and heat: that humanity cannot ethically handle gene-editing technology. The narrator of Kazuo Ishiguro’s dystopian novel Never Let Me Go expresses similar fears for bio-engineering throughout the slow build of the novel: “It was like when you make a move in chess and just as you take your finger off the piece, you see the mistake you’ve made, and there’s this panic because you don’t know yet the scale of disaster you’ve left yourself open to.”
At the moment, there is a sense that we are operating blind. Josiah Zayner is certainly not the only rogue scientist to attempt self-engineering; he’s not even the only person to do so publically. At a biohacking conference in February 2018, the late CEO of Ascendance Biomedical injected his own virus treatment on Facebook Live. He was attempting to cure himself of herpes.
The hype around CRISPR has already leapt ahead of the science, which brings its own concerns. In October 2018, stocks in CRISPR-related companies fell up to 50 percent after a study published that month pointed to the “presence of a pre-existing ubiquitous effector T cell response directed towards the most widely used Cas9 homolog”. That is to say, almost everyone in the world has immunity that would prevent CRISPR-Cas9 gene editing to take effect, and could even make it dangerous to the injected person.
• Photos from Genetics Gym by Adam Peacock
There are many fears associated with excess and the future of DNA science and technology. Among the most pressing are fears that the potentially life-saving treatments offered by genetic sequencing or editing may only be available to the wealthiest members of society. In 2017, Sydney’s Garvan Institute launched Genome.One, offering whole genome sequencing and consulting care for a hefty $6,400 per person. With no Medicare option, this was well outside the reach of the vast majority of Australians as a preventative measure for future illness and disease. In response, Genome.One made major cuts in staff and shifted in direction. The faltering of Genome.One as a venture has largely been attributed to this single-point price tag for an unseen product, set at a higher price than the monthly rent for a three-bedroom in Sydney’s CBD.
As a counterpoint to Genome.One’s offering, the Australian Genomics Health Alliance (AGHA), funded by the government’s National Health and Medical Research Council, maintains principles including accessible genomic medicine and “ethical, legal and social responsibility in the application of genomic knowledge”. By tapping into academic and hospital research facilities nationwide, the AGHA could enable the integration of genomics into Australia’s existing healthcare system.
AGHA positions itself as an industry regulator, keeping the future of genomics fair. Scientists are traditionally seen as a community of helpers; they are the quiet geniuses doing little-understood work that occasionally improves the quality or quantity of life. For many First Peoples worldwide, however, trust in the scientific community is historically fraught and complicated. Rights abuses and harmful misinformation, particularly around genetics, have been perpetuated and underpinned by the accepted science of the time.
In 1994, First Nations peoples around the world resisted the Human Genome Diversity Project (HGDP). The HGDP aimed to map out gene variants and tie them to historical migration patterns. Such a project suffers the pitfalls of any incursive, monoculturally generated project: it did not consider benefits to the peoples it sampled an important element of that project. Consent in cross-cultural exchange is also a problematic process, especially when the terms of negotiation delve into the complexities of biological material and testing. Fearing that this form of DNA analysis could be used to wrongly legitimise governmental policies of disenfranchisement, Indigenous Australians famously objected in the strongest terms. Referring to the HDGP as the ‘Vampire Project’, former Central Australian Aboriginal Congress director John Liddle asserted that “the Vampire Project not only jeopardises the rights and safety of the peoples targeted, but could also lead to the cultural, political and social complexity of Indigenous identity and Aboriginal rights being reduced to an arbitrary genetic test.”
“We are not living in a lab, we live with other people – and society needs to decide what can be done.”
• Photo from Genetics Gym by Adam Peacock
• Photo from Genetics Gym by Adam Peacock
As with the Navajo Nation in the US, no samples were taken from Indigenous Australians for the HGDP. Since then, there has been noted headway in how DNA testing and advances in genealogical mapping have been handled in relation to Indigenous Australians. In seeking how to handle a 30-year database of genetic samples, the National Centre for Indigenous Genomics (NCIG) at the Australian National University has taken a more inclusive, basic rights and informed consent approach to genomics research – asking the communities from which the samples originate what they want done with those samples. This is not a special consideration; what the NCIG and Indigenous communities have been developing is an ethical framework for the scientific handling of genetic information, no matter its origin. These protocols are standards upon which meaningful community engagement with DNA technology and research can be built.
There is so much good that CRISPR and other gene-editing techniques can achieve. Among the most significant is the work CRISPR can do outside the human body. The ability to edit genes raises the possibility of feeding the world by increasing the yield and hardiness of crops; powering the world by engineering ‘third-generation’ biofuels; and conquering disease through vaccine development. The simplicity and relative cheapness of CRISPR technology gestures towards solving some of humanity’s most critical challenges. It also extends our control over the world around us. In 2017, scientists at California’s Salk Institute for Biological Studies created the first human-animal hybrid: a pig with trace amounts of human cells grown into it, which were implanted as an embryo using CRISPR techniques. In 2018, University of California scientists announced they had created a sheep-human chimera, this time increasing the count of human cells from one in 100,000 to one in 10,000. The eventual goal of these studies is to create animals that may grow selected human organs within their bodies to meet the increasing demand for organ donations.
Current laws mean that neither of these bioengineered creatures were permitted to live beyond 28 days as an embryo. Human-inflected chimeras meet controversy in all directions. Their very existence suggests we are not inimitable as a species. The sole fate of these chimeras is to provide organs containing human parts; for our bodies to accept them post-operation, they must be human on a cellular level. Scientists are dedicated to making something like us and for us.
In her 2016 TED talk, Ellen Jorgensen, a leading figure in the DIY biotech and science literacy movement, made the point that “these scientists are being supported by our society … that makes us all the inventors of CRISPR.” Salk Institute professor and chimera-maker Juan Carlos Izpisua Belmonte similarly stated: “we are not living in a lab, we live with other people – and society needs to decide what can be done.” By communicating with and incorporating the needs and beliefs of communities beyond the laboratory, it’s possible to avoid repeating the mistakes of past scientists and researchers. The spectacular incoming technology of bioengineering can be used to benefit people from all walks of life.
There are those calling CRISPR a revolution in backyard science, for and by the people, and those wanting to protect the superior procedures and methods of science’s ivory tower – or avoid amateur mistakes. Both flanks of the scientific community, from renegade biohackers to researchers in the most elite institutions, are calling for society to take notice and take action. There are decisions to be made that touch humanity as a species.
