Thousands die waiting for treatment to be tested and cleared by the FDA - biohacker

You have staged all sorts of experiments on yourself - from injecting jellyfish DNA to populating your own bowels with someone else’s intestinal bacteria. Weren't you scared they would just go wrong and cost you your life?

JZ: Yeah, you know, I’m always scared of the unknown when I do experiments or do science on myself, but it’s something that you kind of have to work through. You have to trust the science, you have to go forward because it’s what you think is correct or it’s where you’re trying to go.

SS: You broadcast your experiments online and you’re known as a do-it-yourself man. At the same time, you say you have no doubt that eventually someone will end up hurting themselves repeating your experiments, being inspired by them. Do you feel any responsibility for what you’re doing?

JZ: Oh, totally! I mean, the hardest thing is when you’re in the public spotlight and people see you and people listen to you, it’s that people are going to sometimes take your word and take it too far, take the things you do and copy off them. I try to learn to be a little bit more conservative in the things I say and do, encourage and inspire other people to do them because I don’t want to see people get hurt. But in the end, if you’re trying to push the boundaries of science and medicine, you’re going to have to do risky things, and sometimes people are going to copy you. And that’s just hard, you know, and I do feel responsibility, but I don’t think there’s anything I can do to stop it either.

SS: These are two different approaches. You say we have a problem with conventional research, because it’s regularly just like “we cured this and that, but the cure won’t be available to the public for a couple more decades”. But isn’t it safer to rely on longer and more thorough research whether than, you know, release everything straight away?

JZ: The questionisn’t about safety necessarily; the question is, I think, more about human lives. So, the way that the FDA regulates medicine in the United States is probably one of the most safe ways you can regulate medicine. But if you’re talking about how many human lives are safe and protected, I don’t know – I think the answer’s different, because people are constantly dying right now. There are so many people who’re suffering and dying right now because they can’t get the medical treatment that they need because of regulation of the FDA. It’s crazy – there’s this drug called Glybera, it was the first approved human gene therapy and it was approved in Europe. Well, they couldn’t sell it. They tried to sell it for a million dollars and nobody was buying it for a million dollars, and so they just took it off the market! This drug Glybera cures this disease – lipoprotein lipase deficiency – but it’s not being sold. Now that sounds pretty messed up to me. So, they’re trying to protect people’s safety, it’s costing a lot of money to sell these drugs and nobody’s getting help.

SS: So, we’ll talk a bit about you. You are really something – you hold a PhD in biochemistry and you worked for NASA as a synthetic biologist. How, when and why did you decide to get off the grid and go into DIY biohacking? 

JZ: What I saw is just that the way science is currently done, it’s not done to try to help people, it’s not done in a way that is the best possible way to benefit humanity – it’s done so that people can get grants, publish scientific papers, build up their ego… And that’s not why I wanted to do science. You know, I was passionate about science because I thought it could do amazing things and possibly help people, and I wasn’t able to do that. Even at NASA, when I was able to work on stuff for space exploration, the government just prevented me from ever really making anything that would go out into the real world. And I think there’s so much science that can be done… It just needs people to do it. So, I left and I decided: “Hey, you know what? That’s science that I want to do. I’m going to figure out a way to do it no matter what”.

SS: You went for an even bolder experiment, replacing the bacteria in your intestines to deal with bowel issues, and you said most of these problems are now gone. What’s the next grand experiment on the list? I mean, this is really interesting, especially the thing with the bowel, because a lot of people are faced with a problem, and most of them think that that problem is related to psychosomatics. Did you prove them wrong?

JZ: The overuse of antibiotics and the overuse of a lot of drugs has led to a change in the bacteria that inhabit the human body. The human body is covered in bacteria, and they’re also in our guts, in our bowels, and these bacteria help us be healthy – they help digest some foods, they help do some things that help out humans. So, when you disrupt this in different ways, when you add different drugs or chemicals to the mix that disrupt this, it can have harmful health effects to humans, to ourselves; and the way that they found that we can kind of overcome this is we can find healthy donors – people who have healthy guts – and we can get the bacteria from their guts and we can transplant them into people. And that’s what I did and it helped out a lot. The problem is that in places like the US, feces, poop is actually a regulated substance, it’s regulated medically, so they can’t prescribe it except only for certain conditions, and most of those conditions have nothing to do with people’s gut health, IBS or things like that, and that’s crazy!

SS: And that’s what happened, because the experiment has seemingly been largely dismissed by the scientific community. If your experiment proved to be successful, why wouldn’t scientists get on this bandwagon and develop a treatment that would work for others? Because it seems so simple when you explain it.

JZ: Well, some of them have. The problem is that the medical system is so slow. So, they did start to do some studies in the past year or two where they started to do these transplants in people who had gastrointestinal illness, and they’ve actually shown pretty positive results. It’s just stuff takes so long to get from research to people, to be able to treat people that it doesn’t make any sense anymore.

SS: Now, you draw a parallel between genome editing technology and computers, which were once available only in labs, but everyone has a PC nowadays. How long will it take until this is going to be the same simple action - like dying your hair in the bathroom or having your hair cut? 

JZ: Oh, it’s crazy, honestly… I know so many people, I get so many e-mails every day from people who want to, genetically modify themselves, or, genetically modify something in an animal, plant or things like that; the technology is moving so fast – like the recent gene edited babies that happened in China. And it’s just more of a distribution problem. How do we educate people? Because most people don’t know what DNA is or how it affects them or how it affects the organisms around them, and so it’s a big education problem – how do we educate everybody so that they understand this technology so that they will use it – but I don’t think it’s long. My company, the owner – we ship our genetic engineering kits all over the world to a lot of people, and it’s just growing faster and faster.

SS: On your website you sell gene editing kits for a couple hundred bucks. I just wonder – what sort of customers do you get most often, who are these people?

JZ: We get all the crazies… No, I’m joking. It’s just normal people, people who are interested in technology: we get schools – a lot of schools buy stuff – we get people buy stuff from all over the world in Russia, in China, in Europe, in South America. So, it’s just normal people, people you wouldn’t even expect, people who are just interested in learning about genetic engineering.

SS: Have you been impressed by any of their experiments so far? 

JZ: By the people’s experiments that they’re doing with the kits in general?

SS: Yeah, with your kits, exactly?

JZ: Yeah, I’m impressed by a lot of people, there are a lot of people – in the US especially – who have started to create their own labs and do experiments and try to figure out things. There are people working on plants, there are people working on animals, there are people working on medicine… and it’s just awesome, it’s crazy that people can contribute to science from their garage or their kitchen, right? How is that going to change the world we live in when people can do genetic engineering or medicine just in their kitchen?

SS: I spoke to gerontologist and anti-aging pioneer Aubrey De Gray – I don’t know, maybe you heard of him – he told me that people are still reluctant to invest in his research fearing that they would put money in science fiction. Does gene editing research face this problem?

JZ: Yeah, it does! It’s funny, because that’s what we all want. We all want science fiction. I don’t think there’s anybody out there like “Governments are investing money in science and what they want to see is how does a fruit fly have sex”. No, nobody really cares about that. What we want to see is like “Make me a dragon, make me a time machine, make me live forever” – that’s the stuff that we all care about and I think there needs to be more investment in that, even though it sounds crazy. One day these things are going to be valuable. Everything sounded crazy –  could you imagine trying to explain a cell phone, a smartphone to somebody a hundred years ago? They wouldn’t even be able to comprehend it, they would just think it was the fakest thing ever, it was foolish and you were lying to them. But it’s real. And these technologies are eventually going to become real, so we need to support them in some way for them to become real.

SS: I like you, Josiah! We’re going to take a short break right now. When we’re back, we’ll continue talking to biohacker Josiah Zayner discussing the future of gene editing technology. Stay with us.

SS: And we’re back with Josiah Zayner, biohacker and head of the Odin startup that sells gene editing kits. Now, you have said – probably as a joke – that you’d want to live in a world where instead of getting drunk tattoos people would get drunk gene changes. And that is funny and cool to imagine, but a tattoo can be removed. Would it be as easy to get rid of an unwanted genome change? 

JZ: It doesn’t necessarily have to be a change to your genome. There are a lot of different ways to do gene editing and genetic engineering, and there are some ways that are temporary. You can imagine when you take steroids or something like that, it’s only a single injection. Eventually the steroids leave your system but your body still retains the effects of the chemical and the drug. Well, there are gene therapies that can be done in a similar way, where your body can still retain the effects of something that is a temporary change to your genetics.

SS: You also said that experiments with editing your own genes can be seen the same way as, let’s say, smoking, which is socially acceptable despite the health risks. So, hypothetically, let’s say we have a biohacker with a gene modification gone wrong – could such self-imposed flaws affect their kids as well?

JZ: Well, it really depends. In most cases no, it can’t, because if you modify your genetics as an adult, your body prevents stuff from getting to your testes or ovaries or places where it will actually affect your kids. So, it’s pretty safe to genetically modify adult humans or adult organisms because those won’t be transferred to the kids. It’s usually when you edit embryos from the beginning that they grow up and all their cells are modified that it can transfer to the children, so it’s pretty safe in that regard.

SS:So, then there are like all different parts of gene editing. You compared biohacking with programming. Now that the CRISPR genie is out of the bottle, what’s the best way to keep the community informed of the best practices and safety procedures? Is there a GitHub for biohackers out there already?  

JZ: I think it’s just education, Here’s the problem with science. Science does these experiments and there’s very little documentation. If you read a scientific paper, there’s three paragraphs of documentation on what they did for experiments that took three years. You’re going to need to do a lot more documentation than that. And so, it’s people like me, like other people doing science at home, biohackers who were documenting this stuff, taking videos, taking very rigorous notes and putting that online for others to see – then people can actually see how to do the experiment, they know what’s safe, they know what’s not. Because just hiding behind this wall of ambiguity can only protect you for so long. Eventually people are going to try stuff, eventually people are going to figure stuff out, so you’d better educate them.

SS: You wanted to make high-edge science more democratic and available to everyone. Do you see things differently now? Will there always have to be a gatekeeper – even if it’s a biohacker with a clear understanding of the best scientific and safety practices – just to make sure the public doesn’t run amok with all the tech?   

JZ: I don’t know if I like the term “democratic” because sometimes democracies can get a little crazy. I like to make things accessible, give people access to them in a decentralized way, and then they can kind of choose what to do with them. Because what happens is when people make rules, sometimes those rules infringe on other people’s rights, and in a community like this, where people are doing stuff all over the world in disparate places, in different cultures and governments and environments, I think people should understand what’s safe and not safe, but people also should be free to explore things that they want to explore.

SS:The Chinese researcher who has claimed to have created the first genetically modified baby has been publicly scolded. His experiment was called ‘dishonorable’ by other researchers, his work is probed, and he himself is under guard and his safety unknown. But if his experiment is proved to be successful, this means a huge breakthrough for humanity. Is ethics always going to hamper research? 

JZ: It’s such a good question! Yes, I think the answer is yes – ethics will always hamper research. Ethics comes from this strange place of knowing a morally correct path, and a lot of times that’s just ambiguous – the “morally correct path”. For instance, in the case that happened with the researcher in China who edited these babies, he edited them so that they would be resistant to HIV. In most of the world, if there was an individual who was resistant to HIV, it would be celebrated, it’s an amazing thing. Could you imagine somebody who cannot contract HIV? That is awesome! But people can place some moral and ethical boundaries on this and say “Oh, well, it’s bad for this reason, they experimented on children who weren’t developed yet” and all these other things. And people choose what they think is the correct way instead of trying to look at the bigger picture and see how it will affect humanity, how it will affect the children’s health and all these other things. Ethics is just a hamper on a lot of scientific research – especially in biology – and it’s different all over the world? What people in China think is ethically correct is different from Russia, it’s different from the US, and who’s correct?

SS: So, having discussed ethics versus research, right now not all states have outlawed genome experiments, and the brunt of the responsibility for living up to research norms has been up to the scientific community. Do you expect that to change as gene editing goes more mainstream? Is there a way to balance out bureaucratic regulation and freedom of research? Ethical research, that is.

JZ: If you look at all new technologies, if you look at cars and automobiles for instance – when they first came around people were just driving around crazy, and it was fine, but then when there were a lot of cars people were crashing into each other, and then they were like “Let’s put in stop signs, let’s put in some guard rails” to protect people from hurting themselves and other people. And those things don’t really hamper our freedom to drive around or travel, right? They protect us and everybody is OK with that. I think you can do the same thing with technology and research and things like genetic engineering. You can find ways to put in guard rails and stop signs that protect everybody but don’t necessarily stop the innovation or prevent people from doing cool things.

SS:How do you draw a line between curing a disease via genome editing and enhancement? For example, it’s known that a baby can inherit a harelip. Should an embryo with a defect like this be subject to gene therapy?

JZ: I don’t think you can draw a line. I don’t think there is a line to be drawn and I think that’s the big problem. People focus on bioethicists and are trying to focus on what is correct and what is incorrect – “We should edit this, we shouldn’t edit this, we should do this, we shouldn’t do this” – when what they should be focusing on is “How do we make this technology available to everybody?” Because that’s going to be the big problem. The big problem isn’t going to be like “Oh, man, somebody’s got muscles and we shouldn’t allow that, or somebody wants to be really tall and we shouldn’t allow that” because there’s no line to be drawn. If you’re three feet tall, one meter tall, is that considered a disease? What about if you’re a little bit taller? You can’t draw a line. So, we need to focus more on making it available to people. 

SS:There is this dystopian idea out there that gene editing and designer babies could lead to a future where societal inequality is literally cemented in our genes, because Timmy the Superbaby will probably fare better in life than your Average Joe, right? And this is far-fetched, but, hypothetically speaking, do you feel this is where the DIY gene editing industry could come out as the unlikely savior?   

JZ: Totally! That’s what I completely think, like what I was just talking about. It’s about this accessibility, how do we make this available to everybody, because what can happen is that people who can afford treatments will get them, and people who can’t won’t, and it’s already happening in societies today. So, if we can break down those barriers, break down the cost barrier, break down the knowledge barrier, break down the skill barrier where it becomes more common, it becomes government supported, it becomes other things so that it’s available to everybody – then, maybe, we won’t have this dystopian future.

SS: Alright, Josiah, it’s been really interesting talking to you. Good luck with everything! We were talking to Josiah Zayner, biohacker and head of the Odin startup that sells gene editing kits, talking about ways to hack yourself and whether people are really ready for this scientific breakthrough.