Published online by Cambridge University Press: 18 December 2021
A twenty-eight-year-old man named Tristan Roberts attempted to genetically modify himself in October 2017 while sitting on a living room couch somewhere near downtown Washington, DC. Thousands watched the shaky Facebook Live broadcast in real time. This DIY adventure, Tristan explained, was part of a much larger goal: to disrupt the business model of big biotech companies. Tristan was HIV-positive and gay. He was tired of waiting for profit-driven corporations to deliver a cure. A computer hacker and website developer, he was already skilled at working with highly technical systems. In collaboration with a group of newfound friends, he was now dedicated to a new mission: making gene therapy affordable for everyone.
Tristan was motivated by principles of social and economic justice. “The standard bioethical paradigm pushes risks to marginalized populations,” he explained to me. In recent years, many big pharmaceutical companies had moved some of their riskiest experiments abroad—to places like India or countries in Latin America and Africa that had relaxed laws. If he succeeded in developing a cheap one-time cure for HIV, he planned to offer it for free or at cost to people who did not have reliable access to medicine. Tristan was tired of corporate profiteering at patients’ expense.
Tristan was aware that he enjoyed tremendous privileges. “White men with HIV live as long or even longer than average people in the US population,” he told me. “But marginalized populations do not live as long as white men.” While Tristan was able to access antiretroviral therapy, at least at moments of his life when he enjoyed insurance through his parents or his job, he saw that HIV medicine was beyond the reach of many people in the United States and abroad.
While at Reed College, Tristan worked as an animal caretaker in a laboratory that was studying obesity medications. Witnessing the use and abuse of animals in research made him critical of the mainstream drug development pipeline. So, despite the risks, he decided to experiment on himself. For those who knew him, this move did not come as a surprise. It was part of his broader fight against corruption in the biotechnology marketplace. (A year earlier, days before Trump was elected president, Tristan spray-painted “corrupt” on the wall of FBI national headquarters.)