In an amazing new MIT Technology Review piece, Antonio Regalado discusses how, “Some scientists are taking a DIY coronavirus vaccine, and nobody knows if it’s legal or if it works.” It is another powerful example of how “citizen-science” and medical self-experimentation (or “biohacking”) is increasingly being used to improve health outcomes, enhance human capabilities, or fight against deadly diseases like COVID. Regalado reports that:
Nearly 200 covid-19 vaccines are in development and some three dozen are at various stages of human testing. But in what appears to be the first “citizen science” vaccine initiative, Estep and at least 20 other researchers, technologists, or science enthusiasts, many connected to Harvard University and MIT, have volunteered as lab rats for a do-it-yourself inoculation against the coronavirus. They say it’s their only chance to become immune without waiting a year or more for a vaccine to be formally approved.
Among those who’ve taken the DIY vaccine is George Church, the celebrity geneticist at Harvard University, who took two doses a week apart earlier this month. The doses were dropped in his mailbox and he mixed the ingredients himself.
Regalado notes that this is all happening despite legal and ethical questions:
By distributing directions and even supplies for a vaccine, though, the Radvac group is operating in a legal gray area. The US Food and Drug Administration (FDA) requires authorization to test novel drugs in the form of an investigational new drug approval. But the Radvac group did not ask the agency’s permission, nor did it get any ethics board to sign off on the plan.
Chapter 2 of my latest book (Evasive Entrepreneurs and the Future of Governance) features a discussion of DIY health efforts, citizen-science and biohacking. Average citizens are using new technological capabilities to address health needs, often beyond the confines of the law. Here’s the beginning of that discussion, which starts on p. 79 of the manuscript:
DIY health services and medical devices are on the rise thanks to the combined power of open-source software, 3D printers, cloud computing, and digital platforms that allow information sharing between individuals with specific health needs. Average citizens are using these new technologies to modify their bodies and abilities, often beyond the confines of the law.
Welcome to the occasionally scary but oftentimes awe-inspiring world of biohacking. Biohackers are essentially “prosumers,” the term many used a decade ago to describe the way average citizens were taking advantage of new communications and computing technologies to become both producers and consumers of news, information, and entertainment. Pro-sumers evaded traditional industry norms and government regulations that had previously made it difficult for citizens to communicate freely. The same phenomenon is now shaking up the world of health and medicine as pro-sumers use new technological capabilities to take their health into their own hands and likely evade many traditional norms and regulations when doing so.
In other words, we can’t just put the genie back in the bottle with sweeping, repressive regulatory controls. Here’s an essay that Jordan Reimschisel and I wrote last year on “Biohacking, Democratized Medicine, and Health Policy” highlighting the many thorny policy issues in play here, as well as possible governance responses.
In another essay, Jordan and I argued that one of the most important and constructive policy responses would be stepped-up risk education and health literacy initiatives. We need constructive approaches to citizen-science and biohacking to make sure we address serious risks but simultaneously avoid blocking beneficial forms of health and medical innovation that our country desperately needs, especially at this time.
The Technology Liberation Front is the tech policy blog dedicated to keeping politicians' hands off the 'net and everything else related to technology.