The Folly of DIY Vaxxers | By Alex Pearlman
This past April I received a call from an acquaintance who said that he and five other scientists were cooking up their own Covid-19 vaccine.
He had access to a private lab in Cambridge, Massachusetts, and had already tested the vaccine on himself—twice.
I told him that I was surprised because I had always thought of him as a company man. He said he had never been motivated to be a “weird biohacker type.” With access to the best scientific equipment and research funding, he had never needed to be. But things were different now with the pandemic. He was worried about his aging parents and his high-risk friends dying. “If we do nothing, we are doing an enormous amount of harm,” he said. He was adamant that he was racing against time.
I was originally intrigued by the idea of a do-it-yourself (DIY) vaccine, and felt hopeful for the team that would soon be known as RaDVaC. But now I feel terrified. Something has shifted as the weeks have slogged on. At least four groups have independently claimed to have developed their own vaccines, which they’ve administered to themselves and their friends without any external validation or approval from the Federal Drug Administration. These include self-proclaimed biohackers, a medical doctor, and my acquaintance’s collective of Harvard and MIT scientists at RaDVaC.
Whether or not they’re qualified to develop vaccines, there’s something deeply disturbing about producing homebrewed Covid vaccines. I have a sinking feeling that someone is going to get hurt (or worse), and that these vaccines could undermine public faith in science and vilify the community biology movement, of which I’m a part. In the face of the federal mismanagement of the pandemic, these projects go beyond being selfish and elitist; they’re dangerous.
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.
Josiah Zayner, a self-proclaimed biohacker and activist, has argued that if terminally ill patients should be able to choose their course of care, DIY-ers should as well. "I see everyone constantly enslaved to our shitty scientific and medical system. We are told what we can and can't do to our bodies and what drugs and medications are acceptable for us to use,” Zayner wrote on Facebook in July. “The system has created gatekeepers to only allow those worthy to participate.”
Zayner gained notoriety in 2017 by injecting himself onstage at a biotechnology conference with a homemade CRISPR gene therapy.
For my own part, after a decade as a human rights and politics reporter and five years studying bioethics and health policy, I actually strongly believe in self-experimentation and in biohackers’ right to autonomy. I believe that the disruption that would come from community biologists DIYing their own medicines could be instrumental in reshaping the unjust US healthcare system.
But not right now. Rather than a humanitarian effort in the face of crisis, those creating vaccines for small groups or those who can pay (like the doctor who has been asked by the FDA to cease prescribing $400 vaccines) only serve to exacerbate the grave healthcare inequalities in this country.
“These groups are not going to do anything for the rest of the world. It’s just an ego trip,” Jeantine Lunshof, a bioethicist at Harvard Medical School, told me. Although she works side-by-side with George Church, one of the collaborators on RaDVaC, she is furious about these projects. I am too.
There is a fundamental difference between combating a pandemic and doing everyday self-experimentation. 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.
And what if these vaccines hurt people? “We can have casualties,” Lunshof told me, fearful that DIY creators or copycats might actually try to prove the efficacy of their drugs by purposefully exposing themselves to Covid-19. The RaDVaC team has already reached out to community labs around the globe seeking collaborators—it would only take one injury to set back the entire community biology movement.
Most importantly, combating anti-vaxxers and misinformation about the virus is just as crucial to public health as therapies and vaccines. If something were to go wrong, anti-vaxxers and those skeptical of science would brandish it as evidence against mainstream science. The fact that members of the RaDVaC team are affiliated with Harvard and MIT, and Zayner was previously employed at NASA, would only fuel the misinformation and anti-expert sentiment peddled online.
While self-experimentation can sometimes be seen as acceptable in scientific research and often legitimate in performance art, in this case it’s a mistake. The stakes are too high. DIYers should be more concerned about the downstream negative effects their actions could have than they are about circumventing established research pipelines in the name of body autonomy. The DIYvaxxers should sit this one out.
Share
References
Regalado, Antonio. “Some scientists are taking a DIY coronavirus vaccine, and nobody knows if it’s legal or if it works.” MIT Technology Review, July 29, 2020.
Murphy, Heather. “These Scientists Are Giving Themselves D.I.Y. Coronavirus Vaccines.” The New York Times, September 1, 2020.
Heidt, Amanda. “Self-Experimentation in the Time of COVID-19.” The Scientist, August 6, 2020.
Kofler, Natalie & Françoise Baylis. “Ten reasons why immunity passports are a bad idea.” Nature vol. 581, 379-381 (2020) doi: 10.1038/d41586-020-01451-0
Evans, Barbara J. “Minding the Gaps in Regulation of Do-it-Yourself Biotechnology.” 21 DePaul J. Health Care L. (2020)
Kofler, Natalie & Alex Pearlman. “COVID-19 Immunity Passports and DIY Vaccines.” Video recording of Genetic Engineering and Society Center Colloquium.
Pearlman, Alex. “Biohackers are using CRISPR on their DNA and we can’t stop it.” New Scientist, November 15, 2017.
Cite This Essay
Pearlman, Alex. “The Folly of DIY Vaxxers” Biodesigned: Issue 3, 17 September, 2020. Accessed [month, day, year].
Community Bio Confronts A Pandemic | By Alex Pearlman
As the movement mobilizes to face coronavirus, can it be trusted?
It’s evening in Bratislava, Slovakia, and Adam Krovina sits in his apartment peering into his webcam. The 31-year-old electronic engineer tells me about spending his nights and weekends on a new initiative that has connected hundreds of makers and amateur researchers around the world: building open source, affordable ventilators.
Krovina leads one of a handful of projects that have been awarded funding from Just One Giant Lab (JOGL), a French open source research platform that delivers microgrants to interdisciplinary teams working on community biology projects. Forced to hunker down in the aftermath of Covid-19, makers and community biologists have jumped into action, looking for ways to help.
Breezy, the low-cost ventilator and Android app system Krovina has created with a team of 15 other researchers, is just one of the many community-led projects kicking off around the world. With an uneven response from governments and overloaded health systems and ICUs, the crisis has created an opportunity for the DIY community to step in with unconventional solutions.
“It’s mind-blowing,” said JOGL founder Thomas Landrain from his home in Paris. “We are drawing a third path between academia and the corporate world where open and participatory science can happen.”
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 JOGL community has leaped from a couple-dozen people in February to 4,500 this month.
At a recent weekly Zoom meeting, 60 amateur researchers shared details about their projects and discussed ways microgrants (provided primarily by the AXA Research Fund) can be allocated by submitting projects to a community vote. So far, 15 projects have acquired funding that ranges from a couple hundred to a couple thousand euros.
The Covid-19 pandemic has created a situation where, for the first time, independent biologists face the very real potential that their projects could see use on the frontlines of a global public health emergency.
Some projects, including the Open-Source Low-Cost Syringe Pump, are being validated for safety and effectiveness by nurses at the Assistance Publique Hôpitaux de Paris, the largest hospital system in Europe.
Combined with an ethos of openness and the impulse to do something—anything—thousands of people are joining or starting DIY projects.
One JOGL-funded project, “Optimizing the NEB LAMP Test,” led by Aanika Biosciences in New York and BioBlaze Community Lab in Chicago, includes a microbiologist working at the Centers for Disease Control and Prevention. The CDC researcher asked not to be named in this piece. The group says they hope to see their DIY diagnostics approved for general use after testing on patient samples at the CDC.
This all sounds exciting—and it is. But regulatory approval for these projects is not a foregone conclusion. The process to validate these tests is extraordinarily detailed, and without the kind of accreditation offered by the national laboratories, scientists involved worry that tests coming from amateur groups could do more harm than good.
“The reality is that if you’re working on something that results in clinical or life and death decisions, you’ve got to have some way of knowing that you’re right,” said Paul Freemont, head of Structural and Synthetic Biology at Imperial College in London and a longtime supporter of the DIYbio community.
The main concern with any DIY therapeutic, diagnostic, or device will always be safety and accuracy. A ventilator, for example, despite being a relatively unsophisticated piece of machinery, must include a sensitive gauge that can accurately monitor the pressure on a patient’s lungs. Otherwise, it could injure or even kill someone, said Russell Buhr, a pulmonary and critical care physician at UCLA.
“Would we love to know that there’s a reserve of thousands of ventilators that we could deploy if things got really hairy? Absolutely,” he said. But, he added, “We don’t want people wasting their time making something we can’t use.”
On the other hand, DIYers believe their projects should be taken seriously. “I know all of this is best explored by professional researchers and public health experts. But it seems to me like there may still be a role for biohackers,” Rick Byers, a software engineer and DIYer, wrote to the DIYBio message board on April 25.
Byers developed his own testing kit using qPCR from home in Ontario. When we spoke over the phone, Byers said that given the lack of resources for testing asymptomatic people, he hopes his test could be validated and used by public health officials to serve his local community.
“I’ve got 144 Covid test kits sitting right here,” said Byers, who lives near a long-term care home. “I could just go drop this off down the street.”
Share
Cite This Essay
Pearlman, Alex. “Community Bio Confronts a Pandemic.” Biodesigned: Issue 1, 6 May, 2020. Accessed [month, day, year].