The Code Makers | By Alex Pearlman
The Code Makers
While some within biotech seek to decode life, others seek to create codes to live by. Jason Bobe and Alex Pearlman have worked on codes of ethics within Community Biology at different stages of its development. A decade ago, when the movement was still inchoate, Jason co-organized the “Continental Congress,” a meeting of community biology lab leaders to draft a shared set of values. These codes became the moral backbone of the nascent movement. Eight years later, when the movement had spread across the globe, Alex Pearlman led an effort to revisit these principles at the Global Community Bio Summit. Surprisingly, her group recast the earlier declarations as a set of questions. As biodesign emerges as a practice, does it require a code of ethics? And if so, what are lessons from the code makers?
We asked the same set of questions to Alex and Jason. Below is what Alex said. Click here to read Jason’s answers.
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Alex Pearlman is an award-winning journalist and a bioethicist. She is a Research Affiliate at the Community Biotechnology Initiative at the MIT Media Lab, and a researcher in the Wexler Lab at the University of Pennsylvania, where she studies ethics and policy issues in Community Bio. She has been published in Stat, New Scientist, MIT Technology Review, Neo.Life, Vice, and elsewhere.
Biodesigned.
You’ve been developing codes of ethics in biology in one capacity or another for quite some time. What kinds of codes have you been working on?
Alex.
The most fun code I helped develop was a code for human augmentation technologies. A little over a dozen biohackers, ethics scholars, and body modification activists met at DEFCON in Las Vegas in 2019 with the express purpose of getting feedback on a draft code of ethics for self-directed human enhancement and augmentation.
The draft itself was already years in the making, but this particular meeting stands out to me as one of the best discussions on codes, ethics, independent research, and what designing the future might look like. We met in a private back room of the PF Changs at the Planet Hollywood Casino. There was red lighting, laughter, excitement and a demonstration of the PegLeg, an implanted device highlighting the real time urgency of the conversation at hand.
B.
Why are codes of ethics important to you and why should they be important to the rest of us?
A.
Codes of ethics communicate the shared values of a community and can act as a beacon for people who are aligned with the group’s values and might want to join. To me, a community should be able to point to something that simply states, “this is what we do and this is what we don’t do.” It can be the terms by which you hold your comrades accountable, and vice versa.
B.
You’ve helped develop a code of ethics for the Community Biology movement. What were your influences in developing the code, and what surprised you in their creation?
A.
The most surprising thing for me was that the document we developed at the Global Community Bio Summit in 2019 didn’t resemble a code at all. Instead, the Ethics Document 1.0 is a choose-your-own-adventure-style activity. It prompts the user to think critically about the ways they can produce ethical work. It’s interactive and much more personal than the average code of ethics, which is usually stagnant and boring. This also means that two groups using the Ethics Document to make their own codes might end up with radically differing results! But, that’s what makes it special and what I think makes it work for community biology.
B.
As technology evolves, how often should a code of ethics be reconsidered and revised?
A.
This is a tricky question, because some technologies are evolving faster than others! I think annual reconsideration of a code is too often and every decade is too long. So the sweet spot is probably between three and seven years, depending on the growth of the community and the pace of changes in technology.
Cite This Essay
Pearlman, Alex. “The Code Makers.” Biodesigned: Issue 9, 11 November, 2021. Accessed [month, day, year].
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.
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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].