In makeshift labs around the country, a ragtag community of tinkerers has taken it upon itself to democratize medicine, disseminate knowledge, and conduct self-experiments not yet sanctioned by the Food and Drug Administration.
Gene therapy is a tool for the masses, they say, not an elitist treatment confined to clinics. EpiPen prices too high? Fine, here’s a DIY EpiPencil. When medications aren’t available for everyone, they don’t just whine about it — they try to make their own in mason jars.
Some outsiders worry that the movement has gotten out of hand, as theatrical firebrands perform stunts, sometimes just for the sake of provocation. But even people within the DIY medicine scene have begun to check the rearview, pump the brakes, and reconsider their route.
We got in touch with a few figures in the field (including a biohacker, pharmahacker, and two bioethicists) and had a chat about the risks and rewards of DIY medicine — from unsanctioned gene therapy to medication made on the kitchen counter. These conversations have been edited and condensed for clarity.
Dr. Josiah Zayner
Zayner, a NASA scientist-turned-biohacking businessman, is arguably the most visible figure in the biohacking community. After a brief stint at the space agency, Zayner, who holds a Ph.D. in biochemistry and biophysics, turned his attention towards The Odin, a company he runs that sells CRISPR gene editing kits and other assorted biohacking goodies to amateur and professional scientists alike.
In Zayner’s view, science — both the practice and it’s products — should be for the masses. Over the past few years, he’s walked the walk of self-experimentation, performing a fecal transplant, jostling with the FDA over the sale of glow-in-the-dark beer making kits, and even injecting himself with a CRISPR construct to see if it’d make his muscles grow. (It didn’t.)
As a self-proclaimed provocateur, Zayner has always been aware of his stunts would bug traditionalists. But now that less specialized biohackers have begun to follow in his footsteps, Zayner says he’s reconsidered the best ways to set others up for success…
Zayner: “I was a little bit naive back then. The hardest thing to see in life is how things will scale. So it’s easy to imagine what happens when genetic engineering and gene therapy are in the hands of a few people. But what happens when a thousand or ten-thousand or a million people know how to do this? That really kind of changes your outlook on things.
“We have to prevent people from doing stuff that they don’t know could hurt them. I don’t regret the things I’ve done. I tend to be a provocateur because it makes people think, respond, and learn. But I’m trying to be more thoughtful to set people up for success rather than for failure.”
“If an individual can be trained [to edit genes] why should only scientists be able to do it?”
Digital Trends: Is that both in regards to what you’re selling and the type of experiments you’re running?
Zayner: “Yeah, both. We recently started working on genetic engineering kits using frogs. A lot of people are into gene therapy and some have just injected themselves without thinking about it, without testing it, without knowing what it’s going to do. That’s not such a great experiment.
“What happens if instead we teach people how to work with animals? Then, if they really are serious about using a gene therapy on themselves, they could test it out on a model system, do some actual science first, and make sure it works and won’t hurt them. There are easy ways to test all these things in animals.”
DT: What’s included in this frog kit?
Zayner: “Right now it’s just a gene therapy with this gene called Insulin-like growth factor 1. It’s expressed in humans mainly during puberty. It’s a great first target because you’re looking for a physical response to the gene therapy that’s easy to see and easy to measure.
“We’ve experimented on 20 or more frogs and seen really positive results. The next step is to teach people how to safely and humanely work with these animals. I see no reason that only scientists should be able to do this stuff. If an individual can be trained to do it why should only scientists be able to do it?”
DT: I guess the counter-argument would be that scientists are better trained to understand the limits and risks, and that the gene therapy for frogs could give an amateur an inflated idea about what they can actually do.
“But what’s the other alternative? That people just suffer and die and nothing happens?”
Zayner: “Well is that a bad thing? Are you saying because they tried something on the frog and it worked and injected it into a human, it’s a bad thing?”
DT: Yeah, I could imagine that having unforeseen negative consequences.
Zayner: “I can’t see it but, I mean, it’s possible. The whole point is to set up a system so that the negative consequences are very far removed. Obviously there’s always the possibility for negative consequences in every situation. But there’s this hunger and thirst for gene therapy because so many people are suffering and dying. So, I’ve got two options morally: I can do nothing because I want to follow our laws or I can help.
“How do I work within the system to help these people in the best way possible? I can’t sell them the gene therapy directly to use. For one thing, I’ll be shut down by the FDA. But what I can do is teach them how to create their own gene therapy. Obviously everything is dangerous and somebody’s going to get hurt eventually. But what’s the other alternative? That people just suffer and die and nothing happens?”
DT: Do you really think it’s inevitable that someone gets hurt?
Zayner: “Oh, of course. Has there ever been a technology where somebody didn’t get hurt? Here’s the thing about technology — you kind of need people who are smart to develop them and also need people who are stupid enough to try them. Flying planes, going to outer space, driving automobiles. I can imagine the first person to do it probably wasn’t the smartest guy. I’m talking about myself here also. It takes somebody who has a little bit of crazy because otherwise nothing gets done.”