Josiah Zayneris a biophysicist who made headlines in 2017 when he tried to edit his genome live onstage at a conference. Using thegene-editing tool CRISPRto modify his DNA, Zayner whipped out a syringe and injected it into his arm. The whole thing was livestreamed on Facebook.
But a year before that,(Reset)hostArielle Duhaime-Ross(then a science reporter at The Verge) watched Zayner perform a “full-body microbiome transplant” in a California hotel room. His goal was to fix gut issues and take control of his own medical care (he’d found traditional methods frustrating).
“He set about killing the collection of microbes that live on and inside his body, and replacing them with microbes he’d collected from a friend. The first step was getting that friend to give up his microbes – via skin swabs and poop, ”Duhaime-Ross explains on the first episode ofReset.
To launchReset, a new podcast from Recode and Vox in association with Stitcher about how tech is changing our lives, Duhaime-Ross revisited her 2016 story and interviewed Zayner once again. This time, as she explains below, they discussed what it means to be a biohacker in 2019 and where it might lead in the future.
“Josiah can be cocky and he’s reckless, but during those three days in 2016, I connected with the part of him that’s driven by a desire to help people; the part of him that allows you to trace his anti-establishment attitude to his sense of justice. So after reading about everything that happened over the last few years – the law in California, the CRISPR stunt – I finally decided to talk to him again. ”
Later inthe episode, Duhaime-Ross talks with California State Senator Ling Ling Chang, who wrote a bill that requires anyone selling a gene therapy kit – do-it-yourself CRISPR kits that Zayner sells himself— in the state to include a notice that warns customers the product is not intended for self-administration. Chang outlines that although CRISPR itself is not illegal, there’s a need for this kind of labeling to avoid backlash against biohackers and to prevent people from getting hurt. So if regulators are starting to dive into the world of biohacking, where does that leave biohackers, who tend to reject authority?
To round out the discussion, Duhaime-Ross reaches out to Alex Pearlman, a journalist and bioethicist who’s leading an effort to help biohackers establish norms for their own community. Prior to attending Global Community Bio Summit 3.0 – an international biohacker conference in Cambridge, Massachusetts – Pearlman described an ethics workshop she had planned. Her goal is to get those inside the small-but-growing biohacker community to not only discuss their own ethics but also define some solid ones that can be shared and agreed upon across the entire group.
So is it possible to be a responsible biohacker?
Hear their entire discussion onReset’s launch episode. Below, we’ve also shared a lightly edited transcript of their conversation.
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Arielle Duhaime-Ross
Welcome to the very first episode ofReset. Today, we’re looking at the ethics of biohackers – the people who conduct real experiments at home outside of the confines of conventional science and without regulatory oversight.
Right now, the technology exists for anyone to tinker with biology, including their own, in all kinds of ways. And as so often happens, those advances have come way before we’ve had a chance to discuss the right way to use them. But first, I want to tell you a story.
In 2016, I was a science reporter at The Verge. That year, I published a feature about a guy named Josiah Zayner. He’d been on my radar for years because of an instrument he’d created, which is played by translating the movements of light-sensitive proteins into sound. See, Josiah’s a PhD in biophysics and a biohacker. So I called him and asked what he was working on. It was pretty interesting and I went to see him in California.
The rest gets a bit weird . I spent three days watching him perform what he called a “full-body microbiome transplant” with the aim of fixing his gut issues. He was frustrated with the medical care he’d received and he was taking matters into his own hands.
To do that, he set about killing the collection of microbes that live on and inside his body and replacing them with microbes he’d collected from a friend. The first step was getting that friend to give up his microbes via skin swabs and poop.
Then Josiah killed his bacteria with antibiotics. With that out of the way, he repeatedly lathered himself in the saline solution full of his friend’s microbes. He also regularly took pills he’d packed with his friend’s feces.
The entire experiment was extremely dangerous. Seriously, don’t try this at home.
Also, given how Josiah went about doing the transplant (it was just him and there was no control to speak of) I never could figure out if it worked. As for Josiah, his experience with the microbiome transplant did nothing to dissuade him from self-experimentation.
Today , he’s still a big part of the biohacker community, which is small but growing. He’s even viewed as a leader by some. But the outside world probably knows him best as the guy who tried to edit his genome in 2017.
Onstage at a conference, Josiah used the gene-editing tool CRISPR to modify his DNA. He whipped out a syringe, injected it straight into his arm, and livestreamed the whole thing on Facebook. Theoretically, the gene therapy was supposed to make his muscles bigger. He got a lot of flack for it, from biohackers, academics, and the public.
The stunt also got him attention from lawmakers. The medical board of California investigated him for practicing medicine without a license. State legislators went one step further. Josiah runs a company called The Odin that sells DIY CRISPR kits. The kits are popular among science enthusiasts because they let you do things like modify bacterial DNA at home.
This summer, a California senator passed a bill that will require labels on DIY CRISPR kits that say they shouldn’t be used for self-administration. And a press release about the law linked to a story about Josiah.
Josiah and I haven’t really talked since the microbiome transplant. But whenever biohacking comes up in the news, I think of him. Josiah can be cocky and reckless, but during those three days in 2016, I connected with the part of him that’s driven by a desire to help people; the part of him that allows you to trace his anti-establishment attitude to his sense of justice. So after reading about everything that happened over the last few years – the law in California, the CRISPR stunt – I finally decided to talk to him again.
Josiah Zayner
There always is a lot of hype around CRISPR but at the time in 2017, it was probably peak hype. Everybody was talking about how it was going gonna cure all these diseases and help all these people and I kept getting emails from people [asking] “Can I use CRISPR to cure me?” And I [thought], if this gene therapy stuff is so powerful and it’s so great like all the scientists, all the companies, all the journalists are saying, why isn’t anybody using it?
What happens if I try to come up with a plan if I wanted to do CRISPR gene therapy on myself? What would what would be the process? So I decided to run a class on how to genetically modify yourself at this conference.
(Arielle Duhaime-Ross)
What exactly did you? You injected yourself with this gene therapy in front of a number of people and you filmed it, right?
(Josiah Zayner)
So I was livestreaming and I was thinking about injecting myself but it [didn’t] feel right. The audience was mystified by what was going on.
So I finished up my little speech and I was gonna go on with my life but then somebody in the audience was like, “Well if it’s so safe and easy, why don’t you do it? ”I had the DNA that I purified in a syringe on me and injected it into my muscle, which is standard during gene therapy.
Arielle Duhaime-Ross
Did it work?
Josiah Zayner
No, not that I could tell. I didn’t expect it just to be a one-shot thing that would do something different. It was more of a statement. I was trying to be an activist and push biotechnology forward.
Arielle Duhaime-Ross
So what was the public reaction like?
Josiah Zayner
You get the mean stuff just from people online who are just like, “Oh this guy’s a fucking idiot. He’s stupid. What the fuck. He doesn’t know what’s going on, ”and all this stupid stuff. And then you get the scientists who are criticizing it. And I would ask scientists, “What part of what I did is not how people do gene therapy?” None of them could give me a straightforward answer. People were trying to judge it at face value as somebody who was just trying to get attention.
After that reaction I got with the CRISPR injection, I realized that the things I do and say can have bigger consequences. People are actually paying attention to the things I do and the things I say and those can cause negative things to happen. I have to take that into account a lot more. That sucks but it’s also reality. We saw a lot of people copycatting.
Arielle Duhaime-Ross
What kind of copycatting did you see?
Josiah Zayner
People also trying to inject themselves with gene therapies. Some of the results were pretty negative. We saw people have immune response – swelling and immune reactions and all this bad stuff that shouldn’t normally happen and it was just like holy shit. Something bad can happen.
(Arielle Duhaime-Ross)
Was that scary for you?
Josiah Zayner
Yeah! I don’t want people to die and get hurt because they’re trying to copy something that I did.
(Arielle Duhaime-Ross)
Do you think any restrictions should be put on DIY CRISPR kits or biohacking at all?
Josiah Zayner
Obviously I don’t want people to get hurt. So we should try to make it so that people are receiving safe treatment. But there is like a huge DIY trans community of people who are trying to get hormones and things outside of the normal medical environments. It’s hard because once you start saying that you can only go through the proper channels, it can oppress certain groups of people.
So the adult in me wants to be like, “No, we shouldn’t let people inject whatever they want themselves because somebody is going to get hurt. ”But the compassionate person in me wants to be like,“ Well we really want to provide everybody with the things that they need and deserve in their lives. ”
Arielle Duhaime-Ross
A few years ago a scientist named Bill Halford performed an unauthorized herpes vaccine trial on human subjects. There was no oversight on the trial and some participants got sick. The FDA ended up launching a criminal investigation because of the way the trial was conducted.
It definitely fell under the umbrella of biohacking: some guy comes up with an experimental, unregulated treatment and administers it to people in hotel rooms and coffee shops without going through the proper channels. Do you think the FDA was wrong for looking into that and pursuing the people responsible? Where’s the line?
Josiah Zayner
No. Totally. Some people said that they got better, though, from the stuff he administered. And you have to understand the FDA. Their goal is to make sure the least amount of people get hurt. They have to make sure that drug companies are able to make money because if they’re not able to make money then they can’t make drugs. And then they worry about making a drug that can reach the most amount of people.
Does everybody get help though the current regulatory mechanism and scheme ? No, not even close.
Arielle Duhaime-Ross
But in the case of Bill Halford, some people really did get very sick. You think that was okay?
Josiah Zayner
People in clinical trials get sick.
Arielle Duhaime-Ross
Yeah, but there are a lot more checks and balances when there’s just more oversight.
Josiah Zayner
If what Bill Halford did actually did work and created a cure, would that be good or bad?
Arielle Duhaime-Ross
I think that ultimately it would be really hard to judge because the way that the study was conducted, it was impossible to know if it was actually effective. The data that came out of that trial was bad data. Ultimately nothing from that trial was usable.
Josiah Zayner
I don’t think the only way to create medicine is through FDA-approved clinical trials. The FDA is good at what they do. But I think there also needs to be room for other ways. Here’s my question: how much is one human life worth? Maybe people would say it’s difficult to answer. Human lives are priceless. And you say, “Well how much is 10 human lives? A hundred? How much is every human life on Earth worth? Is it worth one other human life? Would we be willing to risk one human life to save every life on Earth? ”
Arielle Duhaime-Ross
The other reason that you’ve been in the news quite a bit recently is because of a bill in California that’s supposed to go into effect in January.
Josiah Zayner
I found out after the bill was passed that Senator Ling Ling Chang in the 29 th district of California which includes part of Los Angeles, she wrote a bill and it was passed it was signed by Gavin Newsom. And I think it goes into effect in January of 2020. Which was a bit confusing because it’s to sell a human gene therapies to begin with without FDA approval.
Arielle Duhaime-Ross
So will the bill actually impact your work in any way or your DIY experiments – the ones that you do for yourself?
Josiah Zayner
No, I don’t think it’s going to have a negative impact directly. I think all the impact is going to be indirect. I think this bill scares people. “Oh look at this company that’s selling possibly dangerous things, they have to put a warning label on their stuff.” It can inspire other states and even the federal government to start being more strict about genetic engineering and DIY genetic engineering. And that’s what scares me the most.
Arielle Duhaime ************************************ -Ross
Would you ever sell a CRISPR kit that could be used on a living human being?
Josiah Zayner
Possibly! Not in this current regulatory environment. [But] there are countries that don’t have regulations against some of this stuff. So who knows? I’m not morally opposed to providing people tools to genetically modify themselves, especially if I think I can do it in a safe and effective manner.
Arielle Duhaime-Ross
Is it possible to be a responsible biohacker?
Josiah Zayner
According to the world, I don’t want to be a responsible biohacker because that just means working in a highly regulated lab that follows all these protocols and all these things just for the sake of doing them and tries to do science for the sake of publishing papers and getting grants and not for exploration and creativity. I hope other biohackers also don’t want to be responsible. But as long as you truly honestly think about it I hope that people come to the correct decision. But that’s the only responsibility that I think I care about.
Arielle Duhaime-Ross
The question of responsibility and boundaries in biohacking isn’t exactly new. After Josiah Zayner’s public CRISPR stunt in 2017, the FDA released a notice that said the sale of DIY CRISPR kits for use on humans is illegal. And that was basically it, until this year. In July, California’s governor signed a bill written by State Senator Ling Ling Chang
Ling Ling Chang
When a new technology comes along it generates a lot of excitement. And then there’s a rush to do something that society may not be ready for which generates like a perceived or potentially real danger.
In a nutshell, this law simply requires that all sellers of gene therapy kits known as do-it-yourself CRISPR kits must include a notice before purchase and a label on the product to notify customers that these kits are not for self-administration. That’s it. The actual CRISPR is not illegal. Just when you sell it to self-administer.
(Arielle Duhaime-Ross)
And you feel that a label makes a difference?
(Ling Ling Chang)
Absolutely. On cigarette packets, they have warning labels all the time.
(Arielle Duhaime-Ross)
But cigarettes are not illegal. I get the sense that your bill is sort of like asking a drug dealer to put a label on cocaine saying that it shouldn’t be used on humans. Cocaine is already illegal. Why take this step?
(Ling Ling Chang)
We are just merely being proactive. This would be a civil issue and it could be brought to a civil court. There wasn’t much teeth on the FDA memo. But at least at the state level …
(Arielle Duhaime-Ross)
So it’s just sort of an extra layer where California would also be able to jump in.
(Ling Ling Chang)
Absolutely. It’s merely to prevent potential unintended consequences that may generate backlash against the field. I’m a huge proponent of technological innovation. I’m an advocate for the potential of CRISPR in basic research in medical and biotech applications, but I think that we do have to take a measured approach.
(Arielle Duhaime-Ross)
Josiah’s worried that other politicians might follow in Senator Chang’s footsteps and regulate the heck out of biohacking. I don’t know about that. But my guess is that the law in California won’t be the last. But what if there was another way to set boundaries for biohacking?
Alex Pearlman is a journalist and bioethicist. She’s leading an effort to help biohackers establish norms for their own community. This weekend, she attended an international biohacker conference in Cambridge called Global Community Bio Summit 3.0.
Alex Pearlman
I have heard from people all across the biohacking Community Bio spectrum that working without guidelines as the technology evolves is getting more and more difficult and they want to talk about how the community feels about their experiments.
Arielle Duhaime-Ross
Alex led an ethics workshop where biohackers talked about guidelines.
Alex Pearlman
So one of the goals of my workshop is to help facilitate a conversation where people from inside Community Bio talk about their own ethics and define some solid ones that are shared across the group. You’re talking about trying to create a set of norms for people who, by nature, tend to want to challenge authority. How are you going to get them to participate in this process?
What’s important about any kind of list of ethics like this is that they’re largely aspirational. So this is about holding yourself and your community to the highest standard. It’s about defining, “What is that high standard?”
There might be very intense pushback on basically everything that I have to say and I’m totally fine with that because I think that only not part of the process but incredibly important in this community defining – not just for me, but for people who are watching them, for regulators, for policymakers, for themselves, for people who want to join the movement – what they’re about.
Arielle Duhaime-Ross
What Alex is proposing is an informal and voluntary method of self-regulation. She’s hoping that the biohackers who’ll attend her workshop will come up with norms that they feel comfortable sticking to. By the way, Alex knows Josiah, too.
Alex Pearlman
We go back a few years. I reported on him when he first injected himself in an attempt to edit his own genome using CRISPR.
Arielle Duhaime-Ross
So what’s your impression of him? Where does he fall in this whole biohacking landscape?
Alex Pearlman
His Twitter profile I believe still says “The Mad pirate king of biohacking.” So I think that he and me and other people do consider him to be a sort of leader in the movement for sure.
Arielle Duhaime-Ross
Have you talked to him about your workshop and the norms that you’re hoping to establish?
Alex Pearlman
He and I have gone back and forth on this but he’s not a fan of bioethicists or the concept of bioethics largely. He feels that a lot of times bioethicists, especially coming from academic backgrounds, are trying to infringe on innovation.
Arielle Duhaime-Ross
You’re one of those bioethicists, right?
Alex Pearlman
Yeah. I think it also comes from a limited viewpoint. We’ve agreed to disagree on this and it’s always a friendly debate. I’m really interested in the possibilities of all kinds of biotechnology to disrupt the health care sector. Right now we have a crisis of distributive justice in America when it comes to accessing health technologies and medication and basic coverage. And I think that biohacking is trying really hard to disrupt that system. And I am in favor of examining any possibility for looking at new ways to distribute health care.
Arielle Duhaime-Ross
It’s so interesting to hear you say that because I am certain that some people hearing you say that will go, “Wait, wait! You’re trying to establish norms and you’re talking about ethics and you want people to do health-based biohacking. ”How do you square those two things together?
Alex Pearlman
I would feel very uncomfortable if biohackers started to wade into the pharmaceutical space and deliver health interventions to people without having any ethical norms. For one thing, I would think that it would be bad. There are a lot of groups of biohackers. Josiah is just one of them. The Open Insulin project [is another].
There are a ton of biohackers who are already trying to establish health interventions and create products that are copies of really expensive pharmaceuticals that already exist. That includes gene therapy like Libera. But it also includes things like epipens and abortion pills.
Those kinds of of projects are super interesting but I hope that they will not be used to experiment on actual living human beings without some sort of ethical infrastructure around them.
Arielle Duhaime-Ross
What are your thoughts on the bill in California that was written by Senator Chang?
Alex Pearlman
I think it’s not really going to have an effect at all. If people want to use kits that are not meant for human use on humans, they’re probably going to do it anyway. It’s not a strong enough bill to have a significant impact on the field widely at all.
Arielle Duhaime-Ross
What’s the worst-case scenario if biohackers don’t end up adopting any set of norms?
Alex Pearlman
The worst-case scenario is they actively reject them, and then something really terrible happens – like someone dies.
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