When my kids were little, among their favorite books was The Value of Believing in Yourself: The Story of Louis Pasteur. In it, a determined Pasteur declares that he “must find the invisible enemy,” that is, the germ that causes rabies. Meanwhile, hundreds of kilometers to the east, in a tiny village in Alsace (then part of the German Empire), a young boy named “Joey” Meister is teasing a rabid dog. The dog attacks Joey, biting him 14 times and, alas, the “invisible enemy” makes its way into the boy’s body. Joey is bedridden and his death is all but certain. Then his mother opens the newspaper and reads about a doctor — a man of science! — who has identified the enemy and found a way to kill it. The Meisters hire a carriage and set off for Paris and la maison de Louis Pasteur.
When they arrive after their long journey, Pasteur welcomes them and explains that he has invented a Vaccine. “In my Vaccine,” he says, “are Magical Soldiers with bright eyes that can see in the dark.” Joey’s father is concerned — his son will be the very first to receive the Vaccine. Is it safe? But Pasteur, of course, is not worried because he believes in himself. He administers the Vaccine, and soon the invisible enemy succumbs to the awesome power of the Magical Soldiers. Joey is cured! In recounting his triumph to local children, Pasteur reflects: “I didn’t always succeed. But even if I didn’t, it always felt good to believe that I could.”
A great story, but it’s worth noting that the Meisters traveled by train, not carriage. Pasteur was not actually a physician — he was a chemist-turned-microbiologist who brought in two doctors to help him treat Joseph Meister. Nor was Joseph Meister the first rabies patient treated with the live rabies vaccine — in the spring of 1885 Pasteur had tried it on two other people, one of whom died.
These sorts of bioethical quandaries are almost always fraught with both desperation and incomplete knowledge.
And Pasteur did not necessarily always behave like the cocksure microbiologist gunslinger. In documenting the Meister case, Pasteur wrote, “The death of this child appearing to be inevitable, I decided, not without lively and sore anxiety, as may well be believed, to try upon Joseph Meister the method which I had found constantly successful with dogs” (emphasis added).
The story gets even more complicated. According to Gerald Geison’s exhaustive biography, which included an analysis of Pasteur’s lab notebooks, Pasteur lacked sufficient animal data upon which to base his conclusions. Moreover, the vaccine Joseph Meister got had not been tested on dogs at all. The lack of animal data was so concerning that, Geison suggests, one of the two doctors accompanying Pasteur refused to inject the young patient.
One can make a strong case that, by modern standards, and given what we know about rabies today, what Pasteur did was unethical. But at the time, the thinking was that, even though he was asymptomatic, Joseph Meister would die without treatment. These sorts of bioethical quandaries are almost always fraught with desperation and incomplete knowledge.
I’ve been thinking about Pasteur and Meister a lot lately in the suddenly high-profile context of biohacking. In the last few months, the heads of two start-up companies have posted videos of people injecting themselves with DNA in acts of so-called DIY gene therapy. In October 2017, Josiah Zayner posted a video in which he injected himself with a fragment of the myostatin gene (which regulates muscle growth). In an online post accompanying the video, Zayner wrote:
This is the first time in the history of the Earth that humans are no longer slaves to the genetics they are born with. As I write this, the FDA is in the process of approving the first human gene therapy treatment. Still it’s too slow for me, clinical trials have been going on since before 2008. I want to accelerate that. I want people to have a choice about their genetics.
My knee-jerk, visceral reaction to this was “W00t! Yes! Fight the power, dude!” I’ve been ranting about people having the right to access and to know their own genomes for many years.
But let’s be clear: Knowing is different from messing with. Injecting oneself with a novel molecule is more than an abstract response to the debate about “toxic knowledge.” The former is an act that poses real risks for the kind of toxicity that can actually kill you. How would I feel about one of my kids standing on a stage with a syringe full of something that had not been quality controlled or tested, biohacking herself in the interest of democratizing medicine? Um — not great.
I have tremendous respect for what Zayner is trying to do — bring an engagement with biotechnology to the masses. But what happened next was too much even for him.
In February, Ascendance Biomedical CEO Aaron Traywick appeared at a biohacking conference in Austin, dropped his pants, and injected himself with his company’s experimental herpes treatment. (Traywick, who has herpes, is nothing if not idealistic — colleagues have said he once told them he wanted to cure cancer by Christmas.) According to a report in Gizmodo, Ascendance’s model is (or perhaps was) to rely on volunteers to do what Traywick did — escape FDA requirements to set up a conventional clinical trial by injecting themselves. A few months earlier, a programmer named Tristan Roberts had live-streamed his own injection of an Ascendance antibody meant to cure his HIV.
Injecting oneself with a novel molecule is more than an abstract response to the debate about “toxic knowledge.”
Right after Traywick’s theatrics in Austin, both Zayner and Roberts had a change of heart. In February Zayner took to Facebook to ridicule Ascendance’s lack of testing and data.
[T]hey are gravely misleading people and are making the biohacker community look like idiot scammers. They seem more interested in attention than access. They claim transparency but have provided no data, information, DNA sequences or materials to third parties for testing and verification. And lastly, they are breaking the number one rule of biohacking[:] Never put another person’s life at risk.
A few days later, there was high drama at a Florida lab funded by Ascendance. Traywick reportedly changed the locks and barricaded himself inside the lab after a number of Ascendance contractors — including Roberts — quit the company in response to Traywick’s reckless cowboy approach. Roberts told Gizmodo, “Our CEO doesn’t have a firm grasp of the scientific realities.”
Zayner would later offer a full mea culpa. “Honestly, I kind of blame myself,” he told The Atlantic. “There’s no doubt in my mind that somebody is going to end up hurt eventually.”
I suspect that, were he to do it over, Zayner would behave more like the biohackers Sonya Collins writes about in this month’s cover story. (See “#WeAreNotWaiting,” page 40.) They too are concerned about their own health and that of their loved ones. They too are looking to exercise control over their own bodies. And they too are impatient — their hashtag is meant in earnest. What they are not doing is self-experimentation merely as performance art or giving a middle finger to the FDA as an empty political gesture. They do have a grasp of the scientific realities. They know that belief in oneself, à la Louis Pasteur, is necessary, but it’s not enough. Armed with data, ingenuity, and a large dose of humility, they are asking: How can we do this better?