If you had asked me to test a CRISPR gene therapy on myself on October 3rd, 2016, I would have told you it was a terrible idea. Mostly, my reasoning would have revolved around the belief that the Cas9 enzyme in a CRISPR experiment had a small likelihood of cutting your DNA in the wrong place and causing cancer. Dying for a stupid experiment that might not even work wasn’t something I was into.
On October 3rd, 2017, I injected myself with an experimental CRISPR gene therapy at a scientific conference and live on Facebook. I didn’t die and I don’t have cancer.
CRISPR was the scientific talk of 2017, a clever method to genetically modify most any type of cells, including human cells. Even Ashton Kutcher chimed in:
Obviously, he tweeted this after investing in a CRISPR company but hey. Any publicity is good publicity?
Back To The Beginning
I first learned about CRISPR around 2008, when a soccer teammate and classmate, Lucciano Marrafinni, published a scientific paper titled, “CRISPR interference limits horizontal gene transfer in staphylococci by targeting DNA.”
I thought nothing of it then, and no one else I knew did either.
At the time, CRISPR was nothing more than a niche microbiology curiosity. A part of the so-called “bacterial immune system.” Even in 2012 and 2013 when papers came out by Doudna, Charpentier, Church, and Zhang people really didn’t care much. The experiments and results were limited, and what’s the difference between CRISPR and other genome editing methods already in use like Zinc Finger Nucleases (ZFNs) and TALENs?
That irreverence didn’t last long, though. Eventually, everyone saw the utility: CRISPR was faster, less expensive, and easier to use to make targeted genetic changes than other technologies.
A wave of scientists began trying it out, myself included.
In 2014, I finished my Ph.D. and left the University of Chicago. I received a prestigious fellowship at the NASA Ames Research Center in Mountain View.
I was moving to Silicon Valley, but had little desire to join the start-up tech culture. I loved ValleyWag in the Biddle and Tiku era, and because I spent all my time in Mountain View and Palo Alto, I saw first-hand how ridiculous everything was.
Bars pulled out dance floors at 10 p.m. so that 20 tech bros could dance with the one woman in the place. Stickers on the wall at Rose & Crown said “Die techie scum.” Stanford undergrads talked about how they wanted to be Program Managers when they graduated, as we drank a beer down the street from The Institute for the Future.
It was a real life satire.
I just wanted to be a scientist. That’s what I had been working towards most of my life. At NASA, I was part of the Synthetic Biology program, researching how to degrade waste and build structures using only the materials the astronauts already had available to them. We called it In Situ Resource Utilization (ISRU) — most people call it space colonization.
Most people think NASA is different than the rest of the federal government. Maybe it’s the fancy images, or the fact that they spend so much effort and money on social media. And maybe it is different from the rest (truth be told, I have never worked in any other government position).
Let me tell you though, there was so much bullshit — the paperwork, the politicking drama. At one point, I was even told to work less for fear that spending more time in the lab might lead to some lab mishap when nothing I worked with was even remotely dangerous. NASA isn’t the center of innovation it once was — if it ever was. The organization is comprised of an aged workforce set in its ways, where over 55 percent of the employees are over the age of 55.
NASA looks and sounds more like the U.S. Senate than Google.
NASA turned out to be a mess, and my hard-charging personality didn’t win me many friends. But I still did some cool work on engineering bacteria. It was then that I actually started to mess around with CRISPR.
After being at NASA for almost two years, with my contract set to come up for renewal I needed to make a choice 1) Stay at NASA, try and live the good life of a nice paycheck and never actually needing to do any work(SRSLY my boss came into NASA once a month ) or 2) Leave and try to do science my way.
I understood that NASA, and even academia, wasn’t the place CRISPR would flourish. This tool could make genetic modification accessible to anyone, and I could show people how to use it.
So I did what some chump in the Valley would do: I started a crowdfunding campaign in November, 2015, with the hope of selling people DIY CRISPR kits for editing microorganisms — and I hoped for the best.
CRISPR Is Complicated To Learn Not to Do
When I started to use CRISPR, I read all the papers that had been published so far. It was complicated. There are so many acronyms, including the name CRISPR, which has no relevance to the modern use of the technology. There is the tracrRNA, the crRNA, the PAM, the guideRNA, gRNA, sgRNA, the spacer, proto-spacer, template DNA.
What the fuck?
Personally, I think that in the early days, scientists were trying to obscure their work and wanted to make finding exact methods and DNA sequences extremely difficult. I could not find a step-by-step guide on how to use this technology, and there needed to be one. So I figured, why not make one that anyone can follow?
Ugh, the beginning was hard. CRISPR stands for Clustered Regularly Interspaced Short Palindromic Repeats. This name has no relevance to the way CRISPR is used for genetic modification, in any way. It is literally like calling an airplane an “automobile that flies” and then just never changing it. That is its name, despite not at all being the correct description. I couldn’t get rid of the name, but I could still get rid of a lot of the other bullshit in the explanation of CRISPR systems. I broke the technique down to two simple things, the only things you need for doing CRISPR, the Cas9 protein to cut DNA, and the guideRNA, to tell the Cas9 protein where to cut. It’s that simple and anyone can understand two things, right?
I started a crowdfunding campaign to raise money for a kit that lets people try CRISPR themselves, and I ended up raising over $70,000. It made me a start-up founder (which I almost hate myself for), but it allowed me to bring genetic engineering to peoples’ homes.
In Which I Did A CRISPR Experiment On Myself
I took a Lyft to the annual SynBioBeta conference in San Francisco on October 3, 2017.
SynBioBeta is a genetic engineering conference that attracts CEOs of billion dollar companies, Harvard professors, and people like me who just want a platform to be heard. Or maybe I just wanted to drink and say “fuck” a lot to anyone who was listening.
I generally don’t get nervous for talks —not anymore — but this talk was a little different. The title of my talk was the ever-controversial “A Step-by-Step guide to genetically modify yourself with CRISPR” and I would be giving it to a room full of suits. And these are not the nice, fancy suits that make you look 100.
The talk should be pretty easy. In 2016, I created a guide that already described a step-by-step procedure that one would go through to try to inexpensively modify the DNA in their cells using CRISPR. I decided to make a presentation to go along with my DIY procedure, as well as print off copies of the guide to hand out. Done, and done.
I arrived at the assigned room to give my talk, and there was no connection for my laptop.
If there’s anything I’ve learned about giving talks, it’s that you need to be prepared for everything to fail. I was prepared and there were only a few people in the room anyway, so I pulled out a bottle of Scotch I carried in my bag and began passing it out and I also brought with me tubes of DNA I had synthesized that could do a CRISPR experiment in humans. I wanted people to be able to hold it in their hands and see that it was real. Half the people looked at me, puzzled, when I offered it to them but that’s ok most people just look at me puzzled in general. They don’t know how to take me. I mean I didn’t, I was nervous and a little buzzed — which was good, because I had no choice but to just wing it.
Yikes, I just kind of rambled, and tried to tell people how important this all was. I mean, fuck! For around $500, you can create a custom CRISPR experiment to edit a human’s DNA! How does this not blow your mind?! I didn’t understand why the audience didn’t seem to get how massive this was.
Strangely, as the talk went on, more and more people came into the room. At one point, it filled over capacity. There was no room to move, and there were a bunch of people standing outside the door watching. It didn’t matter how much I tried to pull out my inner preacher I just couldn’t get the audience into what I was saying. That disconnect is always hard for me. I ended my talk and decided to move on. The audience just wasn’t right for it. I asked for questions.
And then the last question came: “So have you tried it? What’s holding you back?”
I parroted the question back to buy myself a chance to think. Was I really going to do this? If I were to try and genetically modify my DNA with CRISPR, now would be the time!
I went to my bag and grabbed the syringe and the DNA I had just in case the opportunity presented itself to inject myself. That sounds weird now. And I did a genetic experiment on myself. I publicly injected myself with DNA meant to modify Myostatin, a gene responsible for muscle growth.
And the cost of the cosmetic CRISPR enhancement I did was under $500.
… And then?
A lot of scientists criticized me afterwards saying that injecting DNA won’t do anything. This is far from the truth, so called Naked DNA injection or non-viral transfection is a common method of gene therapy in animals and humans. There is even a on going clinical trial to inject a gene therapy in the penis to reduce erectile dysfunction(early results brought rising hopes).
There is no scientific or technical reason the experiment shouldn’t work if done properly. If the experiment worked, I would see an increase in size of the the muscle near the injection site in my forearm. In effect, I had become a genetic test pilot, trusting the design and engineering of my creations, but being prepared in case something went wrong.
A lot of scientists thought I was stupid to do this because of off-target effects. But if you kept up with the literature in 2017 and now in 2018, a number of studies came out about how the so-called “off-target” effects of CRISPR were overblown, and not as scary as people made them out to be. With proper CRISPR target prediction software, any negative effects would be mitigated, and worrying about cancer or other issues shouldn’t be a problem. I decided to trust the science and go from there. Could you imagine anything more reasonable or more foolhardy, than to trust science?
So what happened…?
Did it work?
Not that I could tell. I measured my forearm circumference and using measured changes in my DNA using a technique called TIDE.
Why didn’t it work?
I probably needed to inject a lot more DNA, in volume and concentration and over a longer period of time. Many gene therapy studies use an arbitrary amount of DNA to start and then keep increasing the dosage for clinical trials. I should have just went all in and started high.
Could it work?
Totally. It would probably work with a little bit of troubleshooting. The science is sound it is just my application of it that failed.
Why did I do it?
I get asked this question a lot and there are so many reasons. First and foremost, I wanted people to understand the reality of world we live in — these things are possible and real. This isn’t science fiction. Also, I did it because I could, and I was curious to see the results. Yes, I want to be provocative because it makes people pay attention and raises awareness. But I am genuinely interested in seeing what would happen.
Would I try it again?
Probably not. Not because I am scared, or don’t want to get it to work. I think that in order for this stuff to become mainstream, we need a better ecosystem in place to allow cutting-edge gene therapies to be tested easily before being used in humans. I mean, you can only test so much on yourself, right? Instead, I have been working on developing an animal platform that anyone can use to learn and test gene therapies.
Despite the headlines of some articles that came out, I don’t regret doing the injection. What I regret is that I didn’t make it seem like I took it seriously. Many observers thought the injection purely a stunt, in the moment, and had little or no scientific basis. They didn’t see the months of research and 1.5 years of experimentation beforehand.
I also regret that other people then decided to try and inject themselves with “gene therapies” that didn’t have much scientific basis. I regret that I made people think that doing a gene therapy injection was a stunt that could get them famous, and that I didn’t emphasize enough that, to me, this was a serious endeavor.
I often walk a thin line between making science seem approachable and showing all the work that goes into preparing for risky experiments. I fell on the wrong side of that line in this case.
See, experimenting on oneself is an unfortunate situation to be in as a Ph.D. scientist who, only a few years ago, was fulfilling a prestigious synthetic biology fellowship at NASA. Though there is plenty of research showing that gene editing should work, I can’t ethically or legally give these therapies to someone else.
And that sucks.
Everyday I receive an influx of emails from people suffering from diseases, who are looking for a cure. A number of the emails that reach me are from people with diseases that can be targeted with gene therapies that have already been tested and have an low chance of hurting them. I am legally obligated not to help, but morally I feel bankrupt that legally I must let people suffer and not help in a way I know I can.
What would you be willing to do to end the suffering of someone you love?
What would you be willing to do to end the suffering of many others in the world?
For me, I injected myself with CRISPR.