Hacking Your Own Genes: A Recipe for Disaster
Editor's Note: Our Big Moral Question this month is: "Where should we draw a line, if any, between the use of gene editing for the prevention and treatment of disease, and for cosmetic enhancement?" It is illegal in the U.S. to develop human trials for the latter, even though some people think it should be acceptable. The most outspoken supporter recently resorted to self-experimentation using CRISPR in his own makeshift lab. But critics argue that "biohackers" like him are recklessly courting harm. LeapsMag invited a leading intellectual from the Center for Genetics and Society to share her perspective.
"I want to democratize science," says biohacker extraordinaire Josiah Zayner.
This is certainly a worthy-sounding sentiment. And it is central to the ethos of biohacking, a term that's developed a bit of sprawl. Biohacking can mean non-profit community biology labs that promote "citizen science," or clever but not necessarily safe or innocuous garage-based experiments with computers and genetics, or efforts at biological self-optimization via techniques including cybernetic implants, drug supplements, and intermittent fasting.
They appear to have given little thought to whether curiosity should be bound in any way by care for social consequence.
Against that messy background, what should we make of Zayner? The thirty-something ex-NASA scientist, who describes himself as "a global leader in the BioHacker movement," put his interpretation of democracy on display last October during a CRISPR-yourself performance at a San Francisco biotech conference. In that episode, he dramatically jabbed himself with a long needle, injecting his left forearm with a home-made gene-editing concoction that he said would disrupt his myostatin genes and bulk up his muscles.
Zayner sees himself, and is seen by some fellow biohackers, as a rebel hero: an intrepid scientific adventurer willing to risk his own well-being in the tradition of self-experimentation, eager to push the boundaries of established science in the service of forging innovative modes of discovery, ready to stand up to those stodgy bureaucrats at the FDA in the name of biohacker freedom.
To others, including some in the biohacker community, he's a publicity-seeking stunt man, perhaps deluded by touches of toxic masculinity and techno-entrepreneurial ideology, peddling snake-oil with oozing ramifications.
Zayner is hardly coy about his goals being larger than Popeye-like muscles. "I want to live in a world where people are genetically modifying themselves," he told FastCompany. "I think this is, like, literally, a new era of human beings," he mused to CBS in November. "It's gonna create a whole new species of humans."
Nor does he deign to conceal his tactics. The webpage of the company he launched to sell DIY gene-editing kits (which is advised by celebrity geneticist George Church) says that Zayner is "constantly pushing the boundaries of Science outside traditional environments." He is more explicit when performing: "Yes I am a criminal. And my crime is that of curiosity," he said last August to a biohacker audience in Oakland, which according to Gizmodo erupted in applause.
Regrettably, Zayner, along with some other biohackers and their defenders in the mainstream scientific world, appear to have given little thought to whether curiosity should be bound in any way by care for social consequence.
In December, the FDA issued a brief statement warning against using DIY kits for self-administered gene editing.
Though what's most directly at risk in Zayner's self-enhancement hack is his own safety, his bad-boy celebrity status is likely to encourage emulation. A few weeks after his San Francisco performance, 27-year-old Tristan Roberts took to Facebook Live to give himself a DIY gene modification injection to keep his HIV infection in check, because he doesn't like taking the regular medications that prevent AIDS. Whatever it was that he put into his body was provided by a company that Gizmodo describes as a "mysterious biotech firm with transhumanist leanings."
Zayner doesn't outright provide DIY gene hacks to others. But among his company's offerings are a free DIY Human CRISPR Guide and a $20 CRISPR-Cas9 plasmid that targets the human myostatin gene – the one that Zayner said he was targeting to make his muscles grow. Presumably to fend off legal problems, the product page says: "This product is not injectable or meant for direct human use" – a label as toothless as the fine print on cigarette packages that breaks the news that smoking causes cancer.
Some scientists warn that Zayner's style of biohacking carries considerable dangers. Microbiologist Brian Hanley, himself a self-experimenter who now opposes "biohacking humans," focuses on the technical difficulty of purifying what's being injected. "Screwing up can kill you from endotoxin," he says. "If you get in trouble, call me. I will do my best to instruct the physician how to save your life….But I make no guarantees you will survive."
Hanley also commented on the likely effectiveness of Zayner's effort: "Either Josiah Zayner is ignorant or he is deliberately misleading people. What he suggests cannot work as advertised."
Ensuring the safety and effectiveness of medical drugs and devices is the mandate of the US Food and Drug Administration. In December, the agency issued a brief statement warning against using DIY kits for self-administered gene editing, and saying flat out that selling them is against the law.
The stem cell field provides an unfortunate model of what can go wrong.
Zayner is dismissive of the safety risks. He asks in a Buzzfeed article whether DIY CRISPR should be considered more harmful than smoking or chemotherapy, "legal and socially acceptable activities that damage your genes." This is a strange line of argument, given the decades-long battles with the tobacco industry to raise awareness about smoking's significant harms, and since the side effects of chemotherapy are typically not undertaken by choice.
But the implications of what Zayner, Roberts, and some of their fellow biohackers are promoting ripple well beyond direct harms to individuals. Their rhetoric and vision affect the larger project of biomedicine, and the fraught relationships among drug researchers, pharmaceutical companies, clinical trial subjects, patients, and the public. Writing in Scientific American, Eleanor Pauwels of the Wilson Center, who is sympathetic to biohacking, lists the down sides: "blurred boundaries between treatments and self-experimentation, peer pressure to participate in trials, exploitation of vulnerable individuals, lack of oversight concerning quality control and risk of harm, and more."
These prospects are germane to the current state of human gene editing. After decades of dashed hopes, including deaths of research subjects, "gene therapy" may now be close to deserving the promise in its name. But with safety and efficacy still being evaluated, it's especially crucial to be honest about limitations as well as possibilities.
The stem cell field provides an unfortunate model of what can go wrong. Fifteen years ago, scientists, patient advocates, and even politicians routinely indulged in wildly over-optimistic enthusiasm about the imminence of stem cell therapies. That binge of irresponsible promotion helped create the current situation of widespread stem cell fraud: hundreds of clinics in the US alone selling unproven treatments to unsuspecting and sometimes desperate patients. Many have had their wallets lightened; some have gone blind or developed strange tumors that doctors have never before seen. The FDA is scrambling to address this still-worsening situation.
Zayner-style biohacking and promotion may also impact the ongoing controversy about whether new gene editing tools should be used in human reproduction to pre-determine the traits of future children and generations. Much of the widespread opposition to "human germline modification" is grounded in concern that it would lead to a society in which real or purported genetic advantages, marketed by fertility clinics to affluent parents, would exacerbate our already shameful levels of inequality and discrimination.
With powerful new technologies increasingly shaping the world, there's a lot riding on our capacity to democratize science. But as a society we don't yet have much practice at it.
Yet Zayner is all for it. In an interview in The Guardian, he comments, "DNA defines what a species is, and I imagine it wouldn't be too long into the future when the human species almost becomes a new species because of these modifications." He notes in a blog post, "We want to grow as a species and maybe change as a species. Whether that is curing disease or immortality or mutant powers is up to you."
This brings us back to Zayner's claim that he is working to democratize science.
The conviction that gene editing involves social and political challenges, not just technical matters, has been voiced at all points on the spectrum of perspective and uncertainty. But Zayner says there's been enough talk. "I want people to stop arguing about whether it's okay to use CRISPR or not use CRISPR….It's too late: I already made the choice for you. Argument over. Let's get on with it now. Let's use this to help people. Or to give people purple skin." (Emphasis added, in case there's any doubt about Zayner's commitment to democracy.)
With powerful new technologies increasingly shaping the world, there's a lot riding on our capacity to democratize science. But as a society we don't yet have much practice at it. In fact, we're not very sure what it would look like. It would clearly mean, as Arizona State University political scientist David Guston puts it, "considering the societal outcomes of research at least as attentively as the scientific and technological outputs." It would need broad participation and demand hard work.
The involvement of serious citizen scientists in such efforts, biohackers included, could be a very good thing. But Zayner's contributions to date have not been helpful.
[Ed. Note: Check out Zayner's perspective: "Genetic Engineering for All: The Last Great Frontier of Human Freedom." Then follow LeapsMag on social media to share your opinion.]
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
Here are the promising studies covered in this week's Friday Five, featuring interviews with Dr. David Spiegel, associate chair of psychiatry and behavioral sciences at Stanford, and Dr. Filip Swirski, professor of medicine and cardiology at the Icahn School of Medicine at Mount Sinai.
Listen on Apple | Listen on Spotify | Listen on Stitcher | Listen on Amazon | Listen on Google
Here are the promising studies covered in this week's Friday Five, featuring interviews with Dr. David Spiegel, associate chair of psychiatry and behavioral sciences at Stanford, and Dr. Filip Swirski, professor of medicine and cardiology at the Icahn School of Medicine at Mount Sinai.
- Breathing this way cuts down on anxiety*
- Could your fasting regimen make you sick?
- This type of job makes men more virile
- 3D printed hearts could save your life
- Yet another potential benefit of metformin
* This video with Dr. Andrew Huberman of Stanford shows exactly how to do the breathing practice.
This podcast originally aired on March 3, 2023.
Breakthrough drones deliver breast milk in rural Uruguay
Until three months ago, nurse Leopoldina Castelli used to send bottles of breast milk to nourish babies in the remote areas of Tacuarembó, in northern Uruguay, by way of ambulances or military trucks. That is, if the vehicles were available and the roads were passable, which wasn’t always the case. Now, five days per week, she stands by a runway at the hospital, located in Tacuarembó’s capital, watching a drone take off and disappear from view, carrying the milk to clinics that serve the babies’ families.
The drones can fly as far as 62 miles. Long distances and rough roads are no obstacles. The babies, whose mothers struggle to produce sufficient milk and cannot afford formula, now receive ample supplies for healthy growth. “Today we provided nourishment to a significantly larger number of children, and this is something that deeply moves me,” Castelli says.
About two decades ago, the Tacuarembó hospital established its own milk bank, supported by donations from mothers across Tacuarembó. Over the years, the bank has provided milk to infants immediately after birth. It's helped drive a “significant and sustained” decrease in infant mortality, says the hospital director, Ciro Ferreira.
But these children need breast milk throughout their first six months, if not longer, to prevent malnutrition and other illnesses that are prevalent in rural Tacuarembó. Ground transport isn't quick or reliable enough to meet this goal. It can take several hours, during which the milk may spoil due to a lack of refrigeration.
The battery-powered drones have been the difference-maker. The project to develop them, financed by the UNICEF Innovation Fund, is the first of its kind in Latin America. To Castelli, it's nothing short of a revolution. Tacuarembó Hospital, along with three rural clinics in the most impoverished part of Uruguay, are its leaders.
"This marks the first occasion when the public health system has been directly impacted [by our technology]," says Sebastián Macías, the CEO and co-founder of Cielum, an engineer at the University Republic, which collaborated on the technology with a Uruguayan company called Cielum and a Swiss company, Rigitech.
The drone can achieve a top speed of up to 68 miles per hour, is capable of flying in light rain, and can withstand winds of up to 30 miles per hour at a maximum altitude of 120 meters.
"We have succeeded in embracing the mothers from rural areas who were previously slipping through the cracks of the system," says Ferreira, the hospital director. He envisions an expansion of the service so it can improve health for children in other rural areas.
Nurses load the drone for breast milk delivery.
Sebastián Macías - Cielum
The star aircraft
The drone, which costs approximately $70,000, was specifically designed for the transportation of biological materials. Constructed from carbon fiber, it's three meters wide, two meters long and weighs 42 pounds when fully loaded. Additionally, it is equipped with a ballistic parachute to ensure a safe descent in case the technology fails in midair. Furthermore, it can achieve a top speed of 68 miles per hour, fly in light rain, and withstand winds of 30 miles per hour at a height of 120 meters.
Inside, the drones feature three refrigerated compartments that maintain a stable temperature and adhere to the United Nations’ standards for transporting perishable products. These compartments accommodate four gallons or 6.5 pounds of cargo. According to Macías, that's more than sufficient to carry a week’s worth of milk for one infant on just two flights, or 3.3 pounds of blood samples collected in a rural clinic.
“From an energy perspective, it serves as an efficient mode of transportation and helps reduce the carbon emissions associated with using an ambulance,” said Macías. Plus, the ambulance can remain available in the town.
Macías, who has led software development for the drone, and three other technicians have been trained to operate it. They ensure that the drone stays on course, monitor weather conditions and implement emergency changes when needed. The software displays the in-flight positions of the drones in relation to other aircraft. All agricultural planes in the region receive notification about the drone's flight path, departure and arrival times, and current location.
The future: doubling the drone's reach
Forty-five days after its inaugural flight, the drone is now making five flights per week. It serves two routes: 34 miles to Curtina and 31 miles to Tambores. The drone reaches Curtina in 50 minutes while ambulances take double that time, partly due to the subpar road conditions. Pueblo Ansina, located 40 miles from the state capital, will soon be introduced as the third destination.
Overall, the drone’s schedule is expected to become much busier, with plans to accomplish 20 weekly flights by the end of October and over 30 in 2024. Given the drone’s speed, Macías is contemplating using it to transport cancer medications as well.
“When it comes to using drones to save lives, for us, the sky is not the limit," says Ciro Ferreira, Tacuarembó hospital director.
In future trips to clinics in San Gregorio de Polanco and Caraguatá, the drone will be pushed to the limit. At these locations, a battery change will be necessary, but it's worth it. The route will cover up to 10 rural Tacuarembó clinics plus one hospital outside Tacuarembó, in Rivera, close to the border with Brazil. Currently, because of a shortage of ambulances, the delivery of pasteurized breast milk to Rivera only occurs every 15 days.
“The expansion to Rivera will include 100,000 more inhabitants, doubling the healthcare reach,” said Ferreira, the director of the Tacuarembó Hospital. In itself, Ferreira's hospital serves the medical needs of 500,000 people as one of the largest in Uruguay's interior.
Alejandro Del Estal, an aeronautical engineer at Rigitech, traveled from Europe to Tacuarembó to oversee the construction of the vertiports – the defined areas that can support drones’ take-off and landing – and the first flights. He pointed out that once the flight network between hospitals and rural polyclinics is complete in Uruguay, it will rank among the five most extensive drone routes in the world for any activity, including healthcare and commercial uses.
Cielum is already working on the long-term sustainability of the project. The aim is to have more drones operating in other rural regions in the western and northern parts of the country. The company has received inquiries from Argentina and Colombia, but, as Macías pointed out, they are exercising caution when making commitments. Expansion will depend on the development of each country’s regulations for airspace use.
For Ferreira, the advantages in Uruguay are evident: "This approach enables us to bridge the geographical gap, enhance healthcare accessibility, and reduce the time required for diagnosing and treating rural inhabitants, all without the necessity of them traveling to the hospital,” he says. "When it comes to using drones to save lives, for us, the sky is not the limit."