Tristan Roberts sits sandwiched between two men on a couch in a bland DC apartment, with leafy, dusk-lit trees peeking out from the sheer curtains behind him. The mundanity of the setting betrays the extremity of what is about to happen next. On the elliptical glass coffee table in front of him is a bottle of hydrogen peroxide and a tray holding a glass of water, several vials, and syringes. Roberts is about to inject himself with an experimental gene therapy for HIV, a DIY prototype treatment designed by three biohacker friends. The treatment had never been tested in humans.
Tristan Roberts holds the DNA he is about to inject himself with. Image: Ford Fischer
"You can't stop it, you can't regulate these things," Roberts says to the camera a few minutes before pinching his belly fat and plunging a syringe into its tissue. "But you can create an environment where there's transparency."
Roberts and his couch-mates were streaming this feat of imprudent bravery live on Facebook, where 160 souls including myself watched in presumable shock as Roberts genetically altered his body in a drab apartment on a Monday afternoon.
Roberts is a 27-year-old computer programmer and self-described "nomad." He is also probably the first person to genetically alter himself on an internet livestream.
Six years ago, Roberts was diagnosed with HIV. Until two years ago, he told me, his health was kept in check through regular medication. But he hated the side-effects, and then while attending a three-month fringe technology bootcamp in Chile, he had a snafu with his insurer that made it hard to access his medication. He decided to try and control his infection via natural means, like healthy eating. Then he encountered Ascendence Biomedical, a mysterious biotech firm with transhumanist leanings, which was seeking subjects who were willing to experiment on themselves and then publish the results for free online.
Roberts volunteered himself as the first test subject. He would inject himself with an gene called N6 intended to spur his body to produce an antibody that would fight HIV, which research from the National Institutes of Health last fall had identified as extremely good at neutralising the vast majority of HIV strains in the lab, thus theoretically stopping it from infecting human cells and destroying the body's immune system. The antibody was found to be produced naturally by a patient who was HIV positive, but developed an immunity to it. A vaccine using a different antibody to fight HIV is currently in Phase II clinical trials. But while researchers were hopeful N6 might lead to a highly effective HIV vaccine, there has been no human clinical trials of such a vaccine to date.
So Ascendence partnered with three biohackers, who used software to design a plasmid to hold the N6 gene and deliver it to the body's cells. When Roberts injects this concoction into his belly fat, the hope is that the N6 gene will coax his body into producing antibodies, which will then enter the bloodstream and fight his HIV.
"The entire process of doing genetic work is just mixing small amounts of liquids and waiting," Machiavelli Davis, a biohacker, said during the livestream as they waited for the vaccine chemicals to react, oversimplifying just a tad. "The rest of it is done on the computer."
I talked to Roberts about an hour after he had injected himself. His spirits were high.
"I'm feeling pretty elevated," he told me. "But I'm trying to not put all of my emotional eggs in one basket, because there's a very good chance this won't work."
Places that sell inexpensive professional-grade lab supplies and websites where anyone can order their own custom DNA have enabled a growing biohacker movement where people aren't just making glowing beer, they're genetically altering their bodies.
In the US, the Food and Drug Administration does not typically choose to intervene when individuals carry out experiments on themselves, though it does usually strongly discourage such self-experimentation.
"Though our treatments and technologies are not available on the open market, they are available as research compounds," Aaron Traywick, the CEO of Ascendence, said during the livestream. "We do not advise that anyone watching this video do what is about to be done here."
Hank Greely, a bioethicist at Stanford, told me that while it would be unlikely for the FDA to step in, the livestream was still troubling. "If he really did inject a DIY vaccine, I hope it doesn't hurt him," he told me. "But, if it does, at least he would be in line for a Darwin Award."
Eleonore Pauwels, a science policy expert at the Wilson Center, told me the video was "frightening and fascinating." While not strictly illegal, she worried that down the line the kind of self-experimentation promoted in the livestream could have a dangerous ripple effect.
"How could other users modify the self-experimentation down the line and at their risks?" she said. "Could vulnerable populations, [like] children [or] users with no knowledge or skills, be harmed through such self-experimentation? Who is liable? Who is ethically responsible?"
For a lot of reasons, it is unlikely that the vaccine Roberts injected into himself will work. To start, the dose they started him on is very small. And with no human clinical trials to go on, it's entirely unclear how the antibodies produced will interact with Roberts' immune system.
Roberts told me he had done a small test injection to ensure he didn't have an allergic reaction.
"I'm definitely not 100 per cent comfortable," he told me. "This is novel. But there was enough scientific literature and I trusted enough in the ethos of the research." He added, "In the worse-case scenario, I understand I could just have my belly fat liposuctioned out and would be fine."
Greely told me that his biggest concern was the involvement of a company in sponsoring Roberts' self-experimentation.
"A company pushing such self-administration of an experimental compound is another story," he told me. "My eyebrows raised at seeing the CEO of a company that provides the compound — to be used 'for research use only' — starts the presentation by saying, 'We do not advise that anyone watching this video do what is about to be done here,' at the same time he is presiding over a taping, for internet distribution, of a video about just that."
Traywick's grand vision is to fund "transparent" clinical trials, beginning next year in places like South Africa, that undermine the current drug development system by making results available online. In the meantime, they also want to help others access the tools to experiment themselves. Starting in January, he said said the company will sell the "research compounds," at-cost. He expects it will cost under $US100 ($127) to make the same vaccine Roberts injected. Developing it cost around $US5,000 ($6,371).
"We knew that there would be a demand from individuals like Tristan who would want to self-experiment now, and we did not feel comfortable restricting that access," he told me. "In his desire to self-experiment, we understood that Tristan's intelligent and scientific approach to tracking the success of the therapy would serve as a model for others seeking to do the same, and ensure full public transparency for our work, in the process."
In the video, though, it was not always clear that Roberts fully understood what he was undertaking. At one point he refers to DNA as "RNA." At another, Davis corrects his understanding of the vaccine he is about to inject.
"At some point, there has to be the first human to try it out," Roberts told me later. "I think being public and transparent is the most we can do. There's always going to be mishaps. But it's better for it to be out in the open rather than swept under the rug."