They go by the name of bio-hackers: they test trial-phase therapies and publish their results on the Web. The scientific establishment deems them dilettantes. But will research reluctantly need their help?
The human body has been the true protagonist of the social and cultural revolutions of the last 50 years. In the 70s it was the battle ground between pro-choice (“my body is mine, I decide”) and pro-life believers. In the 80s it became a cult object venerated by body-builders and Pilates adepts alike. In the 90s it was the projection of our inner image, thanks to the spread of aesthetic surgery. Nobody, however, could have prepared us for its most recent and extreme chapter: bio-hacking.
Bio-hackers can be ascribed to two essential categories. On the one hand, there are “grinders”, who implant technological micro-devices in various parts of their bodies to increase their functionality. Among the followers of this bionic cult is Amal Graafstra, who famously injected a transponder (the microchip commonly used for pets) in the palm of his hand, allowing him to open his front door without the need for keys.
The other group, decidedly less folkloristic and more interesting from a scientific point of view, is the Bio DIY collective. These are researchers, doctors, or just plain science buffs who meet up in community labs to organise self-managed research projects, the first of which was created in Brooklyn by Ellen Jorgensen, a molecular biologist bent on involving common people in the testing of unconventional approaches or processes.
Out of the two, the Bio DIY group is the closest to a bona fide hacker ethic. Some don’t hesitate to self-administer trial-phase drugs and share the results with their community, with the intent of eliminating the lengthy FDA approval trials for products, and providing them promptly and cheaply to those in need.
A paradigmatic case is that of Tristan Roberts. A twenty-eight-year-old ex-computer programmer from Florida, Roberts contracted HIV six years ago. In the absence of a cure to eradicate the virus, Roberts underwent antiretroviral treatment, like all seropositive patients. Two years ago, he decided to interrupt his treatment. He was tired of being enslaved by a therapy whose only effect was on his symptoms. He was also seduced by news of the discovery of new super-antibodies. The most recent, N6, was said to be able to neutralise 98% of HIV viruses in vitro. If only Roberts could access the therapy. But how, since testing had just begun in the labs of the National Institutes of Health?
This is when Roberts entered the hacker mentality. The N6 antibody is physiologically present in the body of some humans. These are that 1% of HIV positive patients who don’t need antiretroviral treatment because their immune system naturally takes care of controlling the infection. All Roberts would need to reproduce N6 was the genome sequencing of one of such patients.
Enter Aaron Traywick’s Ascendance Biomedical: a company whose objective is to ensure universal access to lifesaving cures, and which provided Roberts with his desired solution. Clearly with a healthy dose of disclaimers: the decision to test the drug was entirely Roberts’s, who was in his full rights to do so according to USA law.
And so came October 18th, when Roberts injected himself periumbilically with a jab containing a very high dose of plasmids, which – with a bit of luck – would have reached the nuclei of Roberts’s cells to stimulate them to produce N6. Following up on his transparency and sharing policy, the process was performed on a Facebook livestream, probably making Roberts the first bio-hacker to test the efficacy of a cure live. Instants before inoculating himself, he declared: “I want to dedicate this to all the people who have died while not being able to access treatment”.
Reactions from the scientific community came thick and fast. For some, the operation was amateurish and with zero chances of success. For others, the only possible outcome him contracting an infection. Others, however, applauded the courage of the bio-hacker. Roberts’s act was equalled to others part of the glorious tradition of testing one’s scientific hypothesis on oneself, which many scientists and doctors turned to when research clashed with bureaucracy or with the unyielding scientific establishment.
Some of these self-experimenters died in the process, like analyst Jesse Lazear, who got himself stung by an Aedes aegypti while studying the effects of yellow fever in 1898. Others were glorified with a Nobel prize, like Barry Marshall, who self-inflicted a gastric ulcer as a way of demonstrating to the scientific community that the disease was an infectious one, and not caused by stress.
What about Roberts? The test results he extracted from an envelope and read out on another livestream a few days ago were discouraging. I was gutted, confessed Roberts. But never mind. A second vial will be ready in December, and it will contain way more plasmids. I’ll inject that one, too, then we can talk about it.