Realizing present and future promise of DIY biology and medicine through a trust architecture

The speed and scale of the pandemic highlighted the limits of current health systems and the potential promise of non‐establishment research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.

Please cite this paper as: Lisa M. Rasmussen, Christi J. Guerrini, Todd Kuiken, Camille Nebeker, Alex Pearlman, Sarah B. Ware, Anna Wexler, Patricia J. Zettler. DIY Biology in the Time of Pandemic, HASTINGS CTR. REP. (2020); doi: 10.1002/hast.1194.

Self-experimentation, ethics, and regulation of vaccines

As the COVID-19 pandemic continues to sweep the globe, several groups have been working to develop and self-administer unapproved, unproven interventions that they describe as vaccines for COVID-19. Some of the interest in these DIY approaches apparently stems from a belief that self-experimentation is never subject to time-consuming ethics board review or regulation, such as by the U.S. Food and Drug Administration. In this paper, we explain that this belief is legally and factually incorrect. Given the proliferation of citizen science efforts to fight COVID-19 and the general confusion (even among sophisticated scientists) that surrounds the regulation of DIY research, regulatory leadership is badly needed.

In a letter responding to this paper and an earlier editorial, Preston W. Estep and George Church defended their production and use of DIY COVID vaccines via the collaborative known as RaDVaC, arguing, “The claim that RaDVaC undermines public trust in vaccines, science, and public health efforts is analogous to criticizing firefighters freely sharing their knowledge to help others fight their own fires—at a time when most of the world is engulfed with raging conflagrations.”

Two replies (from co-authors Guerrini, Sherkow, Meyer, and Zettler, and from Arthur Caplan and Alison Bateman-House) countered that citizen scientists “have heightened responsibilities when public health is at stake.”

Please cite these papers as: Christi J. Guerrini, Jacob S. Sherkow, Michelle N. Meyer, Patricia J. Zettler. Self-Experimentation, Ethics, and Regulation of Vaccines, 369 SCIENCE 1570 (2020).

Christi J. Guerrini, Jacob S. Sherkow, Michelle N. Meyer, Patricia J. Zettler. Transparency is Key to Ethical Research—Response, 370 SCIENCE 1423 (2020).

The folly of DIY vaxxers

Many DIY vaxxers see themselves in league with movements such as Right to Try, which led the campaign behind a law signed by Donald Trump in 2018 that allows terminally ill patients to circumvent the lengthy FDA approvals process and try experimental or unapproved treatments. Today, advocates for body autonomy and biohackers have misinterpreted the concepts behind Right to Try to extend to experimentation on those who are healthy—in particular during this time of crisis.

There are no pipelines for mass production of DIY vaccines, nor do these groups intend to make one. At best, these vaccines can be made in small batches, only available to the privileged few who are looped in or those who can pay for it. Meanwhile, the majority of those who most need access to a vaccine (frontline and essential workers, including low income and low wage workers) will be unable to access a DIY version. This lack of concern for others runs contrary to the ethos of community biology and open science movements. Rather than democratizing access to health technology, they’ve made it a fully elitist enterprise.

Please cite this article as: Alex Pearlman. The Folly of DIY Vaxxers. Biodesigned. Issue 3, Sept. 2020

Community bio confronts a pandemic

As the movement mobilizes to face coronavirus, can it be trusted? Community biology networks are strong, global, and have been in place for over a decade. When the pandemic began, these networks quickly pivoted to Covid-19 projects and opened their doors to anyone who wanted to help. Combined with an ethos of openness and the impulse to do something—anything—thousands of people are joining or starting DIY projects. The Just One Giant Lab community has leaped from a couple-dozen people in February 2020 to over 4,500 by April.

Please cite this article as: Alex Pearlman. Community Bio Confronts a Pandemic. Biodesigned. Issue 1, May 2020.