Self-experimentation has a long history. Scientists have consumed, breathed in, and injected themselves with all manner of substances in the pursuit of scientific understanding. Some have even received Nobel prizes for putting themselves under the microscope. But with the advances in genetic engineering, none have altered their own DNA, in the name of science, until now.
Dr. Josiah Zayner is a biohacker and the founder and CEO of a genetic engineering company called The Odin, which sells biotechnology tools to other biohackers like himself.
"What we try to do is get genetic engineering in the hands of consumers to let them do basically whatever they want with it," he says.
On Oct. 4 at a biotechnology conference in San Francisco, Zayner says he injected himself with CRISPR, the powerful gene editing technology, to biohack the muscle cells in his forearm. "Well, it's not necessarily that I want bigger muscles," he says. "The thing is, that this is the first time in history that we are no longer slaves to our genetics. We no longer have to live with the genetics we had when we were born. Technologies like CRISPR and other genetic modification technologies allow adult humans to modify the cells in their body."
While CRISPR is extremely promising and scientists are really excited about this new area of research, CRISPR is still a relatively new biotech tool. Scientists are still working out how to safely and effectively use it in a clinical setting. But that's not stopping Zayner from trying to push the biohacking envelope. "Now there are extensive programs that have algorithms that choose the best way for CRISPR to target a specific gene that you want. So basically even somebody who is uninformed or less informed could effectively create a CRISPR targeting system to a gene with really little effort or knowledge."
Anyone can go online and buy CRISPR kits from The Odin, but they're not intended for human use. Zayner's kits come with either benign bacteria or yeast that at-home biohackers can tinker with to make the bacteria grow in a medium it normally couldn't grow in or make yeast glow.
"Our CRISPR kits are only for use with microorganisms right now. We do sell the DNA that I used in my human CRISPR experiment, but it's not useful for injection."
The gene Zayner targeted is the myostatin gene. "Myostatin is a gene in humans and animals that essentially prevents your muscle from growing. So when this myostatin gene isn't functioning, then your muscles grow."
The CRISPR system is made up of two parts. "There's the CAS9 protein and there's the guide RNA. Now contrary to popular belief CRISPR doesn't actually do genetic engineering on this human cell. CRISPR, all it does, is it targets a gene and it cuts it. Now in most cells, when a gene is cut, what happens is the cell naturally wants to repair itself."
'If it got into a region that helped control the growth of tumours and it was important to have a healthy copy of the gene, then is it possible that the risk of tumours would increase over a time period?' - Dr. Aneal Khan
Often our cells' DNA repair machinery makes mistakes. Zayner says, "In this case, when CRISPR targeted this gene and cut it, in the repair process, occasionally an extra base pair would be added. And when this base pair is added, the gene isn't made properly, so essentially the gene doesn't function, what they call 'a knockout.' So essentially the myostatin gene was knocked out in a portion of my cells."
Zayner says that when similar experiments are done in non-human primates, like macaques, it generally takes around 16 weeks to see results. "I'm hoping to see localized muscle growth in my forearm. That's what I would hope because it was a localized injection to a specific area."
Other scientists who work with gene editing tools, like CRISPR, say Zayner may be putting himself at risk for off target effects. Dr. Aneal Khan is a medical geneticist from the University of Calgary, "I think we don't really know yet, in humans, exactly what it's going to do. If it got into a region that helped control the growth of tumours and it was important to have a healthy copy of the gene, then is it possible that the risk of tumours would increase over a time period?" That is something scientists are now trying to figure out.
The idea of risk doesn't phase Zayner much. He says, when it comes to this cancer risk, "The question isn't whether something like that is possible, it's more how probable is it? So if you look at the number of edits that happen off target, especially with guide RNAs that have been computationally predicted to target only a single site in the genome, it's super tiny. So I think at least for myself, the data points to that it might not necessarily be as harmful as some suggest. And as far as I know, in animals or in non single celled organisms, spontaneous formation of tumours or cancers never happened using CRISPR."
Trying to boost muscle growth in your forearm is one thing. Treating yourself with DIY gene therapies is another.
Tristan Roberts calls himself "patient zero" for plasmid-based genetic therapy for treating HIV. A few weeks ago, he livestreamed a video out of the U.S. where he injected himself with a biohacked gene to treat his HIV. "There's an antibody called N6, which has been studied by the National Institute of Health. It seems like it destroys most HIV. Like 98.5 per cent of all strains of HIV are destroyed. But the problem is, how do you manufacture this? It's pretty difficult to mass produce at this point. So we're taking a gene, which I believe was present in humans naturally, but only in a small minority of humans. We're taking the gene and trying to give it to my cells."
An article on Gizmodo.com says the therapy was designed by three biohackers with the help of a company called Ascendence Biomedical.
"First of all, I want to dedicate this to all the people who have died while not being able to access treatment even though those treatments were available," says Roberts right before he injects his belly fat cells with his DIY gene therapy. "So, it's not as simple as taking a pill, I admit, but if this actually works for months or years then I would say we've made some tremendous progress."
'The problem with these do-it-yourself approaches is there isn't really a product. You know these people are experimenting on themselves with something that may or may not be designed for health purposes.' - Timothy Caufield
Unfortunately, it hasn't worked — yet. Roberts' viral load actually went up, which is not the result he was hoping for. "It's not really back to the drawing board, now it's just about waiting for round two," he says.
With biohackers entering into the space traditionally held by scientists and clinicians, it begs questions. Professor Timothy Caulfield, a Canada research chair in health, law and policy at the University of Alberta, says when he hears of somebody giving themselves biohacked gene therapy, he wonders: "Is this legal? Is this safe? And if it's not safe, is there anything that we can do about regulating it? And to be honest with you that's a tough question and I think it's an open question."
In Canada, Caulfield says, Health Canada focuses on products. "You have to have something that you are going to regulate or you have to have something that's making health claims. So if there is a product that is saying I can cure X, Y, or Z, Health Canada can say, 'Well let's make sure the science really backs up that claim.' The problem with these do-it-yourself approaches is there isn't really a product. You know these people are experimenting on themselves with something that may or may not be designed for health purposes."
According to Caufield, if you could buy a gene therapy kit that was being marketed to you to biohack yourself, that would be different. "Health Canada could jump in. But right here that's not the case," he says.
There are places in the world that do regulate biohacking, says Caulfield. "Germany, for example, they have specific laws for it. And here in Canada we do have a regulatory framework that says that you cannot do gene therapy that will alter the germ line. In other words, you can't do gene therapy or any kind of genetic editing that will create a change that you will pass on to your offspring. So that would be illegal, but that's not what's happening here. And I don't think there's a regulatory framework that adequately captures it."
Infectious disease and policy experts aren't that concerned yet about the possibility of a biohacker unleashing a genetically modified super germ into the population.
"I think in the future that could be a problem,"says Caulfield, "but this isn't something that would be easy to do in your garage. I think it's complicated science. But having said that, the science is moving quickly. We need to think about how we are going to control the potential harms."