EXOME

all the information, none of the junk | biotech • healthcare • life sciences

No Self-Editing: Biohacker Josiah Zayner Can’t Stop Living Out Loud

(Page 3 of 3)

he gets “every day” from people saying, “‘Let me be your guinea pig, experiment on me,’ and I’m just like, ‘What the fuck, no fuckin’ way.'”

“Maybe this is just me being naive. But obviously I was trying to be controversial and get attention. That’s the whole purpose.”

FBI SELFIES AND NASA BARBS

The FBI—in particular special agent Ed You, whom MIT Technology Review called America’s “top bioterror cop”—knows Zayner. You is known for his outreach to various groups to build relationships and keep track of tools and technology, hopefully before they can be dangerously mis-used. They met in New York last year at a get-to-know-you gathering. It was friendly enough for selfies (You is pictured below on the right, with Zayner).

Still, Zayner said, “I can’t say that they love us.” Agent You referred questions from Xconomy to the FBI press office, which said the bureau wouldn’t comment on interactions with its “outreach partners.”

Other government-related interactions haven’t gone well for Zayner. He said he left his “prestigious” fellowship at NASA in 2015 “because I was fed up with the system, with everything. Outside I saw so many people hungering to be genetic designers and at NASA people hired to do the same siting [sic] on their asses.” He posted a video from his final day with this caption: “My last day at NASA and no one is around because no one is ever around.”

The fellowship was with NASA’s synthetic biology group at the Ames Research Center in Mountain View, CA. Masood Hadi was chief scientist for NASA’s synthetic biology program and hired Zayner for his lab after meeting him at a conference, where Zayner was presenting a poster from his graduate work. “The poster was not all that impressive, it was more his enthusiasm,” said Hadi.

Zayner worked in Hadi’s lab for two years. It could have been longer, but the fellowship ended early. “I believe it was a mutual thing,” Hadi said. “He thought about things differently. It can be taxing for the whole organization.”

Zayner now admits he was a “super-rebellious punk” and clashed frequently with Hadi, whom he described as a “super straight-edge corporate guy” running a lab where “people wanted you to do stuff for no reason.”

When asked to elaborate about Zayner, Hadi said he was “reluctant to go point by point.” Despite his chilly attitude, Hadi wasn’t entirely dismissive of the biohacking movement: “Some [biohackers] are creating a lot of awareness of things. Really well-designed experiments with controls is probably a better way to go. It’s intriguing what he’s doing. Is self-experimentation the way to go? Will it really shorten the runway to develop drugs or solutions?”

The implied answer, one senses from Hadi, is “not likely.” But he left the questions open-ended for a reason: No one knows. And while we’re a long way from self-experimentation receiving a stamp of approval, there are cautious signals from the FDA about more flexible regulatory structures—at least for drug developers.

Elements of society are sympathetic with the frustration behind the DIY ethic. In the U.S., the controversial “right to try” movement, for example, is pushing for looser experimental standards when patients are desperate.

A Norwegian couple has asked Zayner for help developing a DIY lung-cancer treatment for the wife, whose cancer was driven by rare genetic mutations, not smoking. “Eventually the biohackers’ place in medicine will be figured out,” Zayner told me, soon after writing his “introspection” post. “But we have things in place, hospitals, doctors, the FDA, for a reason. To protect people.” On the other hand: “If I were dying and had no treatment, I’d try to do something crazy and inject myself.”

“NO DRAMA”

If ideas from the DIY world emerge to coax “good data and information for less money and time and with fewer subjects” in clinical trials, “all that would be good,” said Stanford bioethicist Greely. “But I continue to think that randomized controlled trials are the least imperfect way of getting to the truth. Healthy people die in Phase 1 trials. I am in favor of caution.”

Ece Karatan, the Appalachian State professor and biofilm specialist who brought Zayner into her lab’s master’s degree program in 2006, had a different experience with Zayner than did NASA’s Hadi: “He was excited, enthusiastic, creative, and easy to work with. No drama.”

He set a tone, said Karatan, working nights and weekends and supporting his fellow students. “One thanked Josiah in his thesis because Josiah helped him believe in himself.”

At one point, Karatan showed Zayner how to download sequences of proteins and genes and then use available algorithms to search other databases for similar sequences. “He told me one day he didn’t like the algorithms the whole world is using, so he wrote his own,” said Karatan. “That’s classic Josiah, this combination of dissatisfaction with existing tools and creativity to make something better.”

The difference between “the world in his head,” as he has put it, and how others interpret it—in essence, the shortcomings of a shared language—is a source of frustration for Zayner, especially when the interpreters are journalists on deadline: “They want access to this sacred part of my life but treat me like a paycheck. They want their sound bite and I try and give it to them but how would I explain my motives… to create something beautiful, to test out new technology, to try and develop something that others could use, for medical use and on and on. How do you explain months of thoughts to a person who wants to condense it down to one sentence?”

The lawsuit has rekindled these feelings. When asked about it this week, Zayner replied, in part: “I probably shouldn’t comment but I will say it makes me kind of sad. Going from doing experiments by myself that no [one] cared about to people judging me constantly and now suing me for things I post on Facebook. Still, I know how Aaron feels. He feels unfairly judged by society and the media, and I have definitely felt that way before.”

Yet, in addition to his unmediated social media outlets, he opens up when the e-mails arrive or his cell phone rings. His former professor said she understands where he’s coming from. “What he’s trying to do is make these seemingly outrageous disconnected ideas that the general public perhaps doesn’t understand and make them accessible to everyone,” said Karatan. “Getting people engaged with the science. That’s a lot more than most of us have been able to do.”

Single PageCurrently on Page: 1 2 3 previous page