Here There (Used To) Be Hackers!

You may have missed it -- I know I did -- but this past weekend was Biohack the Planet 2019, the annual conference that celebrates the biohacking movement.  Fortunately the good folks at StatNews were on top of things, reminding us that biohacking is something more of us should be paying attention to. 

Biohackers may like to think of themselves as rebels, even pirates, but, as one of the speakers said, biohacking may be growing up. 

Credit: Biohack the Planet

If you're not familiar with biohacking, Vox did a deep dive earlier this summer. It's about improving your body, sometimes altering it, and can range from meditating to altering your diet to implanting chips to DIY gene editing.  Technology often plays a key role.

Biohacking has had some celebrated successes, like a 15 year old student developing a cheap, fast, 100% accurate test for pancreatic cancer or the Open Artificial Pancreas System project (#OpenAPS). 

MIT Technology Review reported on a biohacked version of Glybera, a $1 million per treatment gene therapy that was introduced in 2015.  A group of "independent and amateur" biologists claim to have developed a simpler, low-cost version of it in two months for about, oh, $7,000. 

Andreas Sturmer.  Credit: MIT Technology Review

Gabriel Licinia, who spoke at the conference, told Technology Review: "This was developed in a shed in Mississippi, a warehouse in Florida, a bedroom in Indiana, and on a computer in Austria."   The team included Andreas Sturmer, an Austrian biologist who thought of reverse engineering Glybera; Licina, a biologist in Indiana, and David Ishee, a Mississippi biohacker. 

For what it's worth, Licinia told Stat that he thinks of himself not as a biohacker but simply as a biologist. 

Glybera treats a very rare blood disorder and, in fact, was pulled from the market in 2017 because manufacturing it wasn't deemed cost-effective.  The new version, which the developers call Slybera, doesn't work in quite the same way, nor has it gone through the same kind of testing.  Mr. Licinia admits," "I’m not saying that we have a completed gene therapy.  Only that we have one piece.” 

The high cost and lack of availability of Glybera make the biohackers' effort more defensible.  Michael Hayden, who led the original research on Glybera and was unhappy about the drug being priced so high, told Technology Review: "The right to access medicine is a social-justice issue.  Any way to provide potential benefits to patients is entirely meaningful, and I would never stand in the way [of biohackers]."

Mr. Licinia said at the conference that they want others to duplicate their work and even to work with the FDA.  Perhaps that illustrates why he told the crowd, "I would like to propose that we grow up a little bit.”

Credit: Biohack the Planet

Stat reported how the conference is edging towards looking like more traditional scientific conferences, including poster presentations and vendor booths.  Speakers debated peer reviewed journals, working with regulators, perhaps even its equivalents of institutional review boards.  Mr. Licinia said: "We’re so busy running away from this terrible thing that we see that we’re not willing to acknowledge that there is value in some of it. What I really want to see is just a middle ground.”

Conference organizer Josiah Zayner, who has been known for some pretty daring biohacking stunts, largely agreed: 

It’s a tough one, right, because if you build the system that you’re trying to break out of, it’s kind of like: Why are you trying to break out of that system? Then you become a gatekeeper of information, you become a gatekeeper of certain things, and I think that’s the opposite of what we all want."

Biohackers may think of themselves as engineers or biologists or simply people trying to use the available technology tools, which increasingly include sophisticated ones like CRISPR.  That's a problem for regulators.  As Vox put it,

Existing regulations weren’t built to make sense of something like biohacking, which in some cases involves risky procedures and stretches the very limits of what it means to be a human being. That means that a lot of biohacking pursuits exist in a legal gray zone: frowned upon by bodies like the FDA, but not yet outright illegal, or not enforced as such. As biohackers traverse uncharted territory, regulators are scrambling to catch up with them.

Earlier this summer California passed a bill -- the first of its kind in the nation -- to outlaw DIY genetic engineering kits.  Similarly, the FDA has warned people against other biohacking efforts like "young blood transfusions" and fecal transplants.  But, as Dr. Carlson told Vox in regards to the California law, "This technology is available and implementable anywhere, there’s no physical means to control access to it, so what would regulating that mean?"

And that, increasingly, is going to be the problem with biohacking generally.  

Credit: Josiah Zayner

Rob Carlson, a longtime advocate of biohacking, told Vox sees the term "hacking" as problematic:

“It’s a way of categorizing the other — like, ‘Those biohackers over there do that weird thing.’ This is actually a bigger societal question: Who’s qualified to do anything? And why do you not permit some people to explore new things and talk about that in public spheres?”

Healthcare has always prided itself on its closed guilds of experts, such as physicians or pharmacists, and for having the opposite of technology's "move fast and break things" mind-set.  And if we were getting the health outcomes we want, at a cost we can afford, that might continue to be fine.  But we're not.  

Some - such as neuroscientist and former MIT president Susan Hockfield -- believe that the 21st century will be the age of biology, with a convergence of biology and engineering.  Physicians are smart, well educated professionals, but they're not (usually) biologists, engineers or, for that matter, computer scientists.  Biohacking may help get us to places that traditional medicine would take much longer -- if ever -- to get to.

It has been all-too-easy for healthcare to regard biohacking as a fringe movement that was, at best amusing and at worst dangerous.  It's also been natural for some biohackers to view what they do as DIY efforts that were their own business.  Neither side can afford to think those ways any longer.

It is time, as Mr. Licinia said, for biohacking to "grow up a little bit," and for "traditional" medicine to recognize that the 21st century is going to include it.