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Why Won’t Science Let Us Have Night Vision Eyedrops?

In the summer of last year, Amal Graafstra had a question: Could a solar cell under his skin get enough light to power other devices he may one day implant in his body? To find out, he bought a $5 solar-powered calculator from Wal-Mart, pulled out the 1-by-4-centimeter solar cell, cut open his arm, placed the cell under his skin and sewed it back up. By comparing the power output from the cell below his skin versus its output above his skin, he could tell that the cell was indeed able to gather light and put out power. It worked, and Graafstra cut out the little cell.

If Graafstra were attempting this experiment elsewhere — at a company or university lab — the next step might be to try this on a bunch of different people with different skin characteristics: darker, thicker, hairier. But for Graafstra, that was it. He’s not a doctor, or a researcher affiliated with a lab. He’s the founder of a company called Dangerous Things that sells home biohacking kits. “I now know for this particular spot in my arm the difference in a solar panel’s performance above the skin and below,” he said. But that’s all. He has no plans to experiment with the solar cell on anybody else. It’s too risky, there would be too much red tape, it would cost a fortune.

Biohacking is a catch-all term for informal biology done outside of a traditional research institution, often with limited resources and with a DIY spirit. That can include, say, inserting magnets into people’s bodies, or do-it-yourself biology groups that grow transgenic glow-in-the-dark plants in community labs, or people who try to 3-D-print human tissue. The popularity of biohacking has boomed in the past 10 years, but only recently have more and more people wanted to make something that’s bigger than a cool experiment or a fun thing. The problem: money and expertise. Even if biohackers had those things, there’s no guarantee that big players in health are interested in their ideas at all. And if they were, nobody really knows what that partnership would look like.

Cost of a clinical trial (2014)
Respiratory system $115.3m
Pain and anesthesia 105.4
Oncology 78.6
Ophthalmology 69.4
Hematology 65.2
Cardiovascular 64.1
Endocrine 59.1
Gastrointestinal 56.4
Immunomodulation 56.2
Anti-infective 54.2
Central nervous system 53.1
Dermatology 49.3
Genitourinary system 44.0

Source: Department of Health and Human Services

Big Pharma is called Big Pharma for a reason — medicine is incredibly expensive. Today, the average cost to bring a drug to market is $2.6 billion. According to the U.S. Department of Health and Human Services, the average cost of a four-stage ophthalmology clinical trial is $69.4 million. For contrast, Genspace, a community lab in Brooklyn, made $104,769 in 2013, and spent $95,870. Dallas Makerspace, an engineering-based community lab in Dallas, made $132,136 and spent $80,631 that same year. Gabriel Licina, a biohacker who last year created some night-vision eyedrops that he tested on himself, told me his budget for the experiment was about $300.

There are ways that this financial gap is shrinking, if slightly. Experiment, a kind of Kickstarter for research projects, now lets people crowdfund research that interests them. Recently, the Open Insulin project, a group trying to make the production of insulin cheap and easy to do at home, raised $16,656 on Experiment — 277 percent more than it asked for. Todd Kuiken, a senior research associate for the Synthetic Biology Project who studies the public policy angle to community lab spaces, told me crowdfunding might spark a new wave of biohacking for personalized medicine. “It looks like there’s now a pathway or an avenue for people to get the money they would need to really investigate these things,” he says.

But projects that raise a huge amount of money are unusual — according to Experiment’s numbers, the average project size is $11,672. At the Baltimore Under Ground Science Space (BUGSS), artist Ryan Hammond is trying to engineer transgenic tobacco plants to produce cheaper gender hormones for trans people. He’s calling the project Open Source Gendercodes (OSG), and right now, he’s crowdfunding the project to get the money he needs. He’s asking for $22,000 and so far he’s raised $4,250.

Hammond hasn’t just run into the money issue, he’s also run into the second problem that a lot of people face: expertise. “To really point a finger at the problem, not a lot of people know how to construct a scientific experiment,” Graafstra said. Hammond has spent much of his free time at BUGSS taking classes and attending public talks, and so far all of his work has been to learn the techniques required to culture bacteria and plant cells. “So far all the experiments I’ve done have been technical exercises to learn how to do plant cell culturing, bacterial transformation and culturing, etc.,” he told me. While community labs are there to introduce people to biology, they’re not meant to train them to be fully independent researchers.

Graafstra singled out people whose biohacking focuses on nootropics, various “smart drugs” that are meant to enhance memory and cognition, as prime offenders. “There will be a huge forum flurry about ‘I tried this nootropics,’ and you ask, ‘How did you try it? Blind? Double blind?’ Forget it. They’ll say, ‘I didn’t do any tests, but I didn’t feel smarter. The next day I doubled the dose. Then I halved it.’ What the fuck are you doing? Shut up.”

Licina, who based his night-vision eyedrops on earlier research that came out of universities, and who has worked in a variety of biotechnology labs, shares this frustration. “People like to talk about biotech as being the next computer revolution. Computers are inert, they only do what they’re told to do, you can unplug a computer and it doesn’t run amok. Biology doesn’t work like that — you can’t plug and play a liver. And that’s really what people want to do,” he said. For all the money in the world, if a biohacker can’t design and experiment, then there’s no chance the work will move along.

But this is changing too. More and more community labs are giving people the tools and knowledge to design experiments — Kuiken estimates that for the past six years, one or two community labs aimed at teaching experimentation have opened each year. And more people like Licina and Graafstra, who have backgrounds in science and technology, are getting interested in biohacking. The Open Insulin project team includes a synthetic biologist and a biophysicist, along with a host of biohackers who have banded together at Counter Culture Labs in Oakland, California.

“In the garage there’s freedom that you don’t have in a lab.”

And yet, with all these changes, there’s still no pathway to bring a community lab experiment up to the big leagues. Tom Burkett, who helped found the BUGSS lab, sees community labs as a way to feed into the biotech pipeline — they add an extra rung on the ladder below incubator spaces. A biohacker will have an idea and she’ll prove that it works on a tiny scale at a community lab. Then, if she wants to keep going, she’ll raise money online and move to a bigger incubator aimed at developing products. And from there, she’ll get noticed by a big company, which will buy her idea and bring it to market.

But Big Pharma doesn’t quite see it that way. Or at least Pfizer doesn’t. I talked to Mike Latauska, who works on Pfizer’s Worldwide Innovation team. He’s the person whose job it is to keep an eye on these community lab spaces and figure out if there’s a way for them to interact with Pfizer. He routinely meets with the heads of these labs, to learn what they’re doing and try to figure out how Pfizer might be able to learn from them. But when I asked him if he was looking at places like Genspace or BUGSS to find new drugs or products, he said that, if Pfizer did partner with a biohacking lab or project, it wouldn’t be because the mega-company thought they’d make money. It would be philanthropy. “If I were trying to position it as a money-making opportunity, nobody would believe me,” he said. “I think, if anything, it would be something where we’re looking at it as an investment in the community. I don’t think we’d ever do it as a profit venture. I don’t think we would even try.”

Latauska wouldn’t rule out taking a technique from a community lab. “If the community labs figure out a way to perform some activity at, say, one-tenth the cost of what we are doing, and it was open source, I think it would be pretty arrogant of us not to adopt that practice,” he told me. “I would definitely bring something like that to our R&D folks if the community labs were OK with it.” This is the premise behind the Open Insulin Project, and Hammond’s hormone project, but so far neither group has gotten far enough in its research to say whether it can truly make these compounds for that much cheaper.

Latauska is more interested in these community labs because he’s interested in finding ways to help make science a little more accessible to people like Hammond. “When Pfizer was created as a company, regular people could do science all the time. It wasn’t an issue,” he said. Indeed, the idea of trying things on yourself isn’t new. The history of science is full of stories of doctors or researchers stepping into the role of guinea pig to prove whether their idea works or not. Jonas Salk tried the polio vaccine on himself. Albert Hofmann tried LSD before anybody else. August Bier subjected himself to spinal anesthesia before anybody else.

While history is peppered with these stories, told as hero tales, modern scientists are very quiet about their own little biohacks. The researcher who Licina based most of his eyedrop work on admitted to a Gizmodo reporter that he had tried a similar solution on himself years ago. But that researcher didn’t tell anybody about his self-experimentation for years. “I don’t think the pioneering spirit has changed at all. I think the visibility has changed completely,” Graafstra said.

So today, while university researchers aren’t publicizing their own self-experimentation, biohackers are. “Biohackers are much more verbal and visible. But biohackers aren’t putting anything at risk, they don’t have liability or funders or backers that will get pissed off. In the garage there’s freedom that you don’t have in a lab.”

But that freedom from the stresses and expectations of a big lab or company is also what makes the work done by biohackers unappealing to a place like Pfizer. Ultimately, what Pfizer is doing to develop drugs is still on another planet compared to what someone like Hammond or Graafstra is doing in their community spaces. So while some biohackers see the doors opening to Big Medicine, others are a lot more cynical, and some are just frustrated.

When Licina’s eyedrop project first hit the Internet, it got an incredible amount of attention. But none of that provided him with what he would need to make the leap from cool biohacking project to clinical trial. When I spoke with him, he had just gotten home from his day job at a restaurant. “I’ve talked with more than 100 interviewers, just about the eyedrops thing,” he said. “If you’re so goddamn excited, why am I still broke? Why can I not finish the project? Why is there nothing else to do? Why did I just get off a job at a kitchen?”

Rose Eveleth is a producer, designer, writer and animator based in Brooklyn who explores how humans tangle with science and technology.