Sam Allen signed up. So did Gus Carmichel, Usher Kennebrew, William Miles, Charles Pollard, Herman Shaw, Oscar Sinclair, Ed Warren, and hundreds of others. They had heard rumors, Herman Shaw said, that they could get free medical care and access to doctors. They were living in Macon County, Alabama in 1932, sharecroppers, impoverished, black, and without formal education. The men learned there would be a meeting at the chapel, and if they were of a certain age, they might be eligible. “Therefore,” Shaw said, “I went.”
Doctors promised to treat them for “bad blood,” a euphemism for syphilis, which epidemiologists had learned afflicted a larger-than-average number of men in Macon County. The doctors said the experiment would last six months. It lasted forty years.
At one point, the subjects received a letter from the researchers alerting them to a kind of special opportunity. “Some time ago, you were given a thorough examination, and since that time we hope you have gotten a great deal of treatment for Bad Blood. You will now be given your last chance to get a second examination. This examination is a very special one, and after it is finished, you’ll be given a special treatment if it is believed you are in a condition to stand it. Remember, this is your last chance for a special free treatment.”
The special treatment was not a treatment, but a spinal tap in search of evidence of neurological syphilis. The researchers had wanted to track the disease’s full progression, and because of this intention, at no time did they ever provide actual medical care. Not even as the men went blind or insane, not even when penicillin became a widely known cure in 1947 (the same year the Nuremberg Code was established in Germany requiring subjects’ informed consent in response to Nazi experiments), not even when spouses were infected and children contracted it at birth, and not even as men died.
For decades, the researchers published academic papers with their findings, which did not contribute new information on the study of syphilis. Then, in 1972, Peter Buxtun, a social worker and epidemiologist in San Francisco learned about the study and couldn’t believe it was real. Buxtun, employed by the U.S. Public Health Service, the predecessor to the Centers for Disease Control and Prevention and the agency responsible for the Tuskegee syphilis study, asked his supervisor about it but his supervisor said it wasn’t his concern. So Buxtun passed the information along to a friend who knew an investigative reporter, Jean Heller, at The Washington Star.
On July 25, 1972, Heller broke the story. Her lede: “For 40 years the United States Public Health Service has conducted a study in which human beings with syphilis, who were induced to serve as guinea pigs, have gone without medical treatment for the disease and a few have died of its late effects, even though an effective therapy was eventually discovered.”
The next year there was a congressional hearing over the “Tuskegee Study of Untreated Syphilis in the Negro Male.” The U.S. Government agreed to pay a settlement of $10 million to the surviving participants and the heirs of those who died and provide lifetime medical benefits and burial services to survivors. Fred Gray, a civil rights lawyer, has spent decades identifying and paying the descendants of survivors as well as ensuring that a permanent memorial to the men, the Tuskegee Human and Civil Rights Multicultural Center, was established and properly maintained. In 2017, Gray announced a new initiative by the center to identify and name all 623 of the men who are pictured at the museum. “The federal government thought enough to get their pictures, but they didn’t put their names with them,” he told the Opelika-Auburn News. “That’s our challenge.”
In the wake of the atrocities committed on the families of Macon County, the National Research Act, signed into law by President Nixon, required that all human research receiving support either directly or indirectly from the U.S. government be subject to an ethical review. Called the Institutional Review Board, or IRB, it’s become a cornerstone of modern medical research. An IRB requires that the people participating as test subjects be informed of the details of the study and its risks. It requires test subjects provide their informed consent so that no one again would be an unwitting guinea pig.
In my home when I was a child there were no dogs, no fishes or birds. Mine was a cat family, so definitely no cute-faced rodents for me to tend or pet. My experience with actual guinea pigs was limited to ignoring them during the few summers in high school and college when I was a counselor at a nature day camp for elementary school children. I wish I had paid more attention.
In Guinea Pig, Dorothy Yamamoto provides a fascinating journey through the history of guinea pigs in agriculture, science, art, and culture. The author, who is a poet and longtime guinea pig owner, tells us that guinea pigs have evolved in synchrony with humans, bred for their ideal, mild-mannered, small-animal temperaments: “From a human point of view, guinea pigs have been engineered to become just what we want them to be—a process which began thousands of years ago in their Andean homeland, when the fiercer animals would have been dispatched more quickly, before they could breed, and which is still continuing today.”
Easy acquiescence. Quick breeding. Comfortable in hearth-side pens from which the cook could pluck them then break their necks so as to have fresh meat for dinner. The more I learned, the harder it was to not despair. The guinea pig, with its array of vocalizations, its soft fur, small body, and lack of aggression, elicits a desire in people to comfort, cuddle, and protect it, and yet it is a culinary delicacy around the world. Dissonantly both human pet and foodstuff.
In 2019, archaeologists in southern Peru discovered one hundred guinea pig corpses at the Tambo Viejo site, sacrificed in sixteenth-century Incan ceremonies, lavishly decorated. The excavated guinea pigs, who still had their fur, wore colorful necklaces and earrings, and some were wrapped in small cotton rugs.
By the late eighteenth century, guinea pigs were sacrificed in a different way, for science. The creatures were used to understand respiration and to test theories on the causes and cures for scurvy since, like people, their bodies can’t produce vitamin C. The scurvy experiments were crucial to the exploration of the Arctic and space, any place fresh citrus might be limited. The more I learned, the more it hurt. The history of the guinea pig is also the history of modern medicine and human exploration.
The phrase “guinea pig” first referred to a person or thing as a subject of an experiment in 1913, and in 1961, “guinea pig” became a transitive verb as in “[The astronauts] were guinea-pigged into hot chambers,” according to Time magazine. They were ready to waste their bodies in aircraft flying at their engineered limits. And even today most astronauts go to space to test limits of some kind, performing biological and physiological research often on themselves and their crewmates.
Scott Kelly, the astronaut who spent almost a year in space between March 2015 and March 2016, conducted a number of self-tests that included drawing his own blood and wearing a special pressure suit to try to figure out why astronauts who spend enough time in space experience changes in their eyesight, sometimes for the better, sometimes for the worse.
The astronaut eyeball is one of NASA’s most pressing physiological challenges. When in low gravity, the shape of the eyeball changes for reasons unknown. It could be that increased fluid pressure in the head squishes eyeballs out of form, which makes eye blood vessels and optic nerves swell, but it’s not confirmed. In his book, Endurance, Kelly notes that only male astronauts have suffered the effects of altered eyeballs in space. If scientists can’t figure out the cause, he writes, “we just might have to send an all-women crew to Mars.”
Astronauts exert their own limits on the science, too. Since they are public figures and there are relatively few of them and, in some experiments, it’s likely not difficult to match data to subject, historically they haven’t been keen on experiments that investigate certain sensitive issues. For instance, the question of boredom and if they ever get it. Or any negative psychological tendency, such as anxiety or depression, that might indicate poor adaptability for spaceflight. They are the heroic guinea pigs, guinea pigs with cachet.
For the purpose of the HI-SEAS food study, we needed to bend some rules of the isolation. Though we were supposed to be living hundreds of millions of miles from Earth, one of our main experiments required fresh supplies throughout the mission, which would be delivered to the air lock. A support team member would notify us of a time window during which someone would quietly drop off the supplies so we would know to stay inside and not accidentally run into them. To maintain the fantasy, we’d say the supplies had been “teleported,” just one of the many stories we told ourselves in order to live on Mars.
On Mars, through these food-study experiments, I learned that there are two ways to smell a thing. The first is through your nostrils and is called “orthonasal olfaction.” The second is called “retronasal olfaction,” wherein food volatiles carry scent from the mouth through the nasopharynx into the nose—very important in giving food its taste. When you have a stuffy nose, it’s retronasal failure that’s responsible for the bland taste of food.
For the study, we activated this backdoor olfaction during the food-cup tests by using a straw in the lid of the plastic cup, putting lips around the straw, holding the nose, inhaling and then releasing the nostrils to breathe out. Some foods’ retronasal aroma bears minimal resemblance to their orthonasal aroma. I enjoy the smell and taste of soy sauce, for instance, but gagged during every retronasal encounter, the smell to me as repulsive as rotting garbage.
Another odor-identification test came in the form of scratch-and-sniff booklets, scientifically validated, of course, and administered three times over the mission. As a crew, we’d sit at the table together, unwrap the books, and get to it. The wafting scent of grass, rubber, lilacs, lemon, root beer, and roses seemed obvious at first. But by the last test, I noticed it took longer for me to positively ID almost all the smells. It might sound strange to think fondly of a scratch-and-sniff booklet. But I do recall being grateful, during that last round in particular, for the vibrancy and variety of aromas—the smells were so different from our limited day-to-day scents—even while I struggled to call out their names with confidence.
There were two other nose tests, less about smells and more about breath. One involved an instrument researchers call an acoustic rhinometer. We called it a nose flute. A hollow tube is inserted just inside your nostril. You hold still, activate the flute with a tap of the computer keyboard, and hear the clicks. Those clicks are the sound the flute makes as ultrasonic pulses travel into your nostrils and sinuses. The pulses reflect back into a detector at the other end of the tube, producing a curved lined across the computer screen. That’s the mathematical representation of your sinuses.
The shape of my nose is evidently just at the limits of the usual nose so that it was sometimes difficult for Yajaira, chief scientist and administrator of these tests during the mission, to get a good reading. More than once after one of my measurements, the flute had to be recalibrated. To do that, Yajaira had to run the rhinometer through an extra session, where it emitted its ultrasonic pulse into a piece of molded plastic that, though it looks nothing like a nose, was considered the standard nose. I would apologize and be embarrassed and Yajaira would laugh and assure me that it was okay.
The other breath test involved a face mask to measure the volume of air inhaled and exhaled. Little yellow foam cylinders like earplugs were inserted into one nostril at a time. Breathe in, breathe out, repeat for two minutes. Switch sides. Both nose tests took the crew at least an entire afternoon to cycle through.
And every night a mood survey. Lying in bed with my laptop on my stomach, I’d click the questions. How was your day? Did you feel lonely? Happy? Angry? Excited? Tired? Were you hungry? Sick? Who did you interact with today? Were the interactions positive or negative? Rate them. By our numbers as guinea pigs, we were mostly noses and survey responses.
My introduction to the IRB for HI-SEAS was during the crew tryout at Cornell University the summer before the mission. This was how we learned the details of what, exactly, we were signing up for. In the small cafeteria off the test kitchen, Kim Binsted outlined the sociological and psychological experiments. It was in this room where the fact that we were test subjects became clear, especially when we were handed thick packets of consent forms, and asked to read and sign.
Before, as a group, we had been congenial and relaxed as we got to know one another, our dehydrated food supplies, and the folks running the project. After the packet, we realized exactly what this was all about: the significant and continual donation of bodily, psychological, and social data for four months. And a promise to commit. To what, exactly? Binsted told us that more experiments were coming down the pike, and they hoped we’d consent to those as well. Don’t worry, she assured us, there would be no experiments that hadn’t passed the rigorous IRB process. They’d all be signed off on by a panel of experts who agreed that the experiments were, in a word, humane. And further, we, the test subjects, would have access to all the information we needed to make an informed decision about saying yes or no.
In this moment, presented with the IRB materials, it was hard for me to be sure that what I was doing was in my best interest. How might we or the data be exploited? What didn’t I know? I did know I wanted to be part of this big-deal NASA project. And so I examined the documents. It all seemed reasonable. I remember that some others asked questions, but I don’t remember what, exactly. I do remember Binsted and Hunter answering them patiently, conscientiously, and to everyone’s satisfaction. And since we were conducting our own research, we were told, each of us also needed to take online training, complete with history lessons on the ethics of human experimentation, and demonstrate a full handle on the privacy issues concerning human test subjects and their data. It was a rigorous ordeal, but I’m cognizant of the privilege, in this particular case, to be supported by a system in which we guinea pigs were worthy of protection as human beings.
It occurs to me that there’s a sense in which you could look at my brother Mark’s life as a repeated series of a mortally twisted version of the choice I easily made in signing those forms. For him, the choice was to say yes to guinea-pigging or die. Mark was born in 1969 with a hole in his spine, spina bifida in one of its most severe forms. He wasn’t expected to live a year. He did live, though, for nearly five decades, during which he was a Boy Scout, a member of the debate team, and a high school and college graduate. He loved theater and was a member of the International Alliance of Theatrical Stage Employees Local 31. He was also a disability-rights activist and, in 2012, a delegate from Kansas to the Democratic National Convention.
Technically, Mark died from heart failure, but really, there was more to it. His body, like all bodies, was a system of systems, and when one system weakens, it taxes the others, pulling resources and attention, requiring interventions and fixes upon fixes. His body had endured, starting from the day he was born, decades of surgeries, medications, treatments, and procedures, among them nearly fifteen years of dialysis for kidneys ruined early on from complications due to his original birth condition.
Mark attributed much of his unlikely survival as a child and ultimate thriving to his doctors, who were willing to try the unprecedented. And he was especially proud of being, at age twelve, the first patient to receive a new twist on an old procedure that then became the standard.
The life-threatening fact for children with severe spina bifida is that by the time they reach adolescence, their uncooperative spines can no longer support the weight of their torsos. In Mark’s case, his spine had folded to a 103-degree angle, a side-to-side S curve. His heart and lungs were being crushed. Without intervention he would suffocate.
By February of 1981, my brother’s situation had reached the point where an operation to straighten his back was imminent. But Dr. Marc Asher, my brother’s orthopedic surgeon at the University of Kansas Medical Center, was concerned about the low success rate for the current state of the procedure, which took place as a single operation. The last patient who’d received the surgery had died on the operating table.
Knowing he needed something better, Asher traveled around the country, scrubbing in at dozens of ORs. In the end, he came up with a two-part procedure. In the first operation, scheduled for April, Asher would go in at the front of the spine with an incision that started at the thoracic vertebrae, move along his side, and curve toward his pubis. The central discs of Mark’s spine would be removed and replaced with metal plates and cubes with screws sticking out that could be tightened or loosened to straighten it up. Cadaver bone was used to hold everything in place.
This surgery lasted fourteen hours and required twenty-four units of blood, my mother says. When it was over, Asher came out to the waiting room to update my parents, to tell them that Mark was alive, but that he’d lost so much blood. Blood had been everywhere, he’d said, he had been standing in blood. But Mark was alive.
Two weeks later, my brother, whose spine was now only curved at a 45-degree angle, was back on the table for the second surgery. This time, Asher opened him from the top of his thoracic vertebrae to his sacrum and inserted a set of two Harrington rods, one for each side of the vertebrae, with wires wrapped around them, connecting to the metal components installed in the first operation. With a kind of needle-nose pliers, he twisted the wires and straightened Mark’s back to a curve of just 19 degrees, finally lifting the weight from his heart and lungs.
My brother’s recovery began at a rehab facility in St. Louis, and by mid-July, he’d be coming home. My father drove the maroon 1976 Oldsmobile, spacious enough to load in Mark on a backboard, driving him across Missouri back home on July 17, 1981.
It was the same day 114 people were killed, and 216 were injured at the Hyatt Regency Kansas City when four suspended walkways, each one crashing through the one below it, collapsed to the lobby floor. The rescue operation took fourteen hours as people were trapped under sixty tons of steel, concrete, and glass. Cranes were called in to dislodge the rubble. There were loud pops seconds before it happened, survivors said. An investigation revealed a subtle, last-minute design change in the connections between walkways: support beams could barely hold the load of the bridges, let alone anyone who might be standing or dancing on them. The Hyatt Regency walkway collapse remains one of the deadliest engineering failures in U.S. history. There were no spare gurneys anywhere in Kansas City for my parents to bring my brother into the house, but there were neighbors who helped carry him on the backboard and into his own room for the remainder of his recovery.
One day, about a month into the mission, Yajaira told me that she couldn’t stop thinking of a vision she’d had—it wasn’t quite a dream—that we were all inside a round-bottomed flask, the skin of the habitat dome partially covering it, and we were being swirled and swirled until we produced a desired reaction. Recent mission support communications had been strained: we needed help troubleshooting some technical issues, but the support people who knew the most about our facilities responded to questions about particulars of the solar panels and other power systems in confusing and, we thought, possibly purposely antagonistic ways. Was this a test? NASA scientists are fairly confident in the factors that can make a good team break down, Binsted had said, but they weren’t as sure about the traits that helped a good team maintain its resilience. Our data might clarify that. Might difficult interactions with mission support be part of the experiment? We learned later it wasn’t.
Early in the mission, Jean Hunter asked us to set up some cameras in the kitchen. The food study required data on time spent cooking and cleaning, measured in minutes, captured by video. We noticed, though, that there was another camera, already installed and pointed toward the dining table. What was this one for? No one could say. We later learned it was installed by an engineer on the construction team who, innocently enough, wanted an audio-free live feed for the school-age students who took classes on sustainability he taught. Even though it wasn’t used, no one had asked our permission. Sensitive to our privacy in a space where so much of what we did and felt was already monitored and recorded, we immediately removed it.
All crewmembers brought their own projects to the mission. Sian’s main project was to film a cooking show where she demonstrated recipes that people had sent in as part of a contest. That meant she was sometimes filming in the kitchen and often editing in her room and that when a contest-recipe meal was made, all of us had to fill out further surveys to rate it. She also took pictures during the mission, of us eating, working, getting dressed in our mock space suits to go outside, of the food, of the equipment, anything, really. I was planning to write a long story about HI-SEAS for Discover magazine, and she agreed to provide the photos. She also took photos outside—inside lava tubes, over red-rock fields, of the night sky—the Milky Way unimpeded by city lights—and of our dome, lit up from the inside.
Angelo, who was working on a second Ph.D. (his first was in biology) at Delft University of Technology on concepts for interstellar travel, was interested in HI-SEAS for how it might inform future space-travel design. Specifically, he was curious about ecological and social systems in space and how they intertwine with technological systems. In practical terms this means asking complex social questions around topics like space gardens or, in Angelo’s case, growing sprouts. How might tending plants in space (an ecological system) affect the people who work with the plants and the people who eat the plants (sociological systems)? And what infrastructure might a garden require or alleviate (technological systems)? He worked on a remote robot farming prototype with Simon and a University of Hawai‘i engineering student named Ileana Argyris. He also conducted weekly conversations with us, the crew, about our ideas of resilience in isolated environments and the challenges they tend to bring—the disrupted sleep, the busy schedules, the frustrations with sometimes unpredictable equipment, communication issues with mission support and loved ones.
Oleg collected rocks around the habitat and performed spectroscopy studies to determine composition, just as astronauts would likely do on Mars, a way of telling the story of the planet’s formation and thus the solar system’s origins. He also brought a thermal camera and made a heat map of the habitat for part of his experiment on modeling temperature variation throughout the dome. We found Simon’s room was the hottest spot, possibly because it was right over the kitchen. But also, I’ve never seen anyone sweat as much when using a treadmill.
Simon had been earning a master’s degree in robotics at the time of the mission. One of his projects, which extended to other HI-SEAS missions, was to analyze trends in water and power use in the habitat. His other main project was the robot pet study. This was motivated by the question that since live-animal pets wouldn’t be allowed on Mars, might astronauts benefit in some way from a robot pet? The thinking is that there could be calming, mental-health benefits to interacting with a cute, possibly cuddly creature that communicates in a nonverbal way. We all agreed to hang out with and fill out surveys about two robot pets. One was PLEO, the walking, cooing toy dinosaur that responds to light, motion, touch, and sounds. The other was immobile, about the size and shape of a paint can but covered in blue fur, and it beeped. Its name was Romibo. I, personally, was not impressed by either.
The experiment I brought to HI-SEAS was a sleep study. I knew astronauts struggled with sleep on the ISS, and I also knew that blue-white light tended to wake up our circadian systems, and so I wondered if a bright dose of it in the mornings might make sleep the following night better or more restful. Everyone agreed to have their sleep monitored with headbands and armbands at night, take surveys in the morning, and light baths on various days throughout the mission.
Yajaira brought with her a number of microbial studies, making bacterial maps of the habitat—the refrigerator handle and the wall next to the toilet were teeming—and testing antimicrobial textiles like socks, sheets, and sleeping shirts from various companies that NASA uses or is considering using. For one, we wore antimicrobial socks, woven with copper threads. Yajaira swabbed our feet before and after and smeared a petri film with the swab. After a few days, the bacteria flourished in all cases but mine, giving me an outsize sense of pride over my naturally very clean feet.
In another bacteria study, we wore pajamas until we could no longer. Rewearable garments are of interest to NASA since there’s no laundry in space—once you’re done with clothes, you throw them away, which is basically out the hatch into a used, purposely expendable resupply pod, which then burns up in the atmosphere. The Canadian astronaut Chris Hadfield once said on a late-night show that when you see motes of dust floating in a sunbeam, that’s his underwear.
I fell in love with one of the antimicrobial sleeping shirts. I loved its heavy cotton, its navy blue, the length of its long sleeves, its neckline, the fit around my shoulders, and how it never seemed to pick up my body odor. I figured I’d wear it until the end of the mission, and take it home if they’d let me, but around week three, I noticed that when I put it on, it felt ever so slightly heavier and cooler to the touch. My skin oils and dead cells had been accruing. After a month, disgusted, I retired it.
Currently there are likely at least three people lying in bed for NASA. Their beds are tilted at a six-degree decline so that blood and other fluids pool headward. Their sinuses swell. Their hearts change shape. The blood vessels in their legs contract. It’s all to mimic the insults of weightlessness in space, and then, of course, to figure out how to mitigate those insults.
The facility that NASA now uses for these experiments is in Cologne, Germany, but during our mission, the bed-bound were housed in a facility in the Gulf Coast city of Galveston, Texas, where, just blocks away, families spend sunny summer days at beautiful beaches or the nearby water park. Those who agreed to participate in a so-called bed-rest study did so for as long as one hundred days, depending on the needs of the experiment and the subject’s ability to endure psychological and physiological tests as well as a marked decrease in day-to-day autonomy.
Subjects must be prepared for the possibility that they may not be chosen to exercise much during their stay, which means a longer and more painful period of post-study physical therapy. If they are chosen to exercise, they can expect, for instance, to be suspended, still supine, on a platform that hangs them in place so that they can “run” on a treadmill whose belt is oriented at a 90-degree angle to the ground, literally crawling the walls. Further indignities include, for instance, the use of bedpans, showers on waterproof gurneys also tilted at six degrees, and required eating of all their calorie-calibrated meals so as to maintain their initial weight to within three percent.
Strange exercise, lack of privacy, forced feedings, no direct sunlight, a schedule dictated by researchers interested in the particular way that your body deteriorates over the course of months. Who signs up for this?
“Some of these guys really need the money,” says Bryan Caldwell, the former Cornell postdoctoral researcher in charge of the bed-rest studies in Galveston. NASA offered about $18,000 for seventy days in bed, room and board covered. “They pay off their debts. We have people who want to come in now so they get out just before Christmas.”
Only two of the fourteen subjects Caldwell worked with—all subjects were men between their midtwenties and midfifties—had any actual interest in space, he says, or what the data’s being used for.
And what do they do with themselves while in bed? According to Caldwell, some of them end up just watching TV. Usually these are the subjects who didn’t come in with a specific project or goal in mind. Those who bring a project they’ve already started tend to be more productive, he says. Then there are others who treat the experience like a resort where they just lie around. These are the ones, Caldwell says, who tend to get grumpy when they’re taken for testing.
Ethically, the researchers must follow certain rules. For instance, they can’t interrupt a subject taking a toilet break—beds are wheeled into bathrooms where subjects use their bedpan with some privacy—but Caldwell says there are those who seem to always need to go just before a test and then stay in the bathroom as long as possible. Other small rebellions occur when subjects grow bored with the food choices and try to hide their mashed potatoes under their plates.
The bed-rest subjects in Galveston and our HI-SEAS crew were linked like fraternal twins. We shared a conception and raison d’être: both our groups were solicited to study menu fatigue and were funded under the same NASA grant. But we presented very different faces to the outside world.
While both groups got the same mood surveys and the same odor-identification tests and the same test to measure how well our noses worked, HI-SEAS got much more media attention. My crew and I helped design some of the experiments we participated in. We had the potential to be coauthors on papers published with the data our bodies and experiences provided. And we even devised our own schedule and mission rules. Unlike our brothers in beds, we had a fair amount of day-to-day autonomy, a voice in the specifics of the experiments that would be conducted on us, and, publicly, something that almost edged toward esteem.
Late one August night in 2016, my brother Mark called me. “I’m worried that Trump will get elected,” he said, “and that there will be an apocalypse. I want you and Jill to know I love you, and I want you to be okay.”
Mark was staying in a rehab facility in Kansas City where he had been for many months enduring daily dialysis, a failing heart, fluid on the lung, and CNN’s political coverage. He wasn’t prone to exaggeration or grand statements, and so I wondered if the isolation and the constant stream of pundit forecasts were unsettling his mental health.
Around the same time my brother called, I talked to an acquaintance who spent a lot of free time reading articles on Facebook. Some of her political inclinations were different from Mark’s, yet she too was becoming a strong believer that the end was near. Articles about unprecedented natural disasters portending doom had her in a frequent state of worry.
Mark’s news intake was extreme, as was this acquaintance’s, but they couldn’t have been the only levelheaded people having these kinds of deep fears. And what of those more prone to suggestion? What kinds of effects was all the election coverage in various forms having on our collective psyches?
In the years after Donald Trump was elected president, the world learned that Facebook, in particular, did play a role in distributing false and misleading news coverage, though the company claimed contradictory messages about its ability to affect people’s voting behavior. Mark Zuckerberg initially dismissed criticism that Facebook could have played a part in the election outcome even as investigations showed targeted, sensationalist, false news reports were flowing at great volume through its platform.
It’s almost as if the company’s 2012 voting study, an experiment with sixty-one million people who randomly received politically mobilizing messages, published in the journal Nature, never happened. “The results show that the messages directly influenced political self-expression, information seeking and real-world voting behavior of millions of people,” the study’s authors wrote.
And it’s almost as if the company’s 2014 “social contagion” study, in which researchers at Cornell and Facebook manipulated news feeds of 700,000 users with more or less “positive” or “negative” language, resulting in users responding with correspondingly more or less positive or negative posts themselves, never happened. The sweeping conclusion of the social contagion test was that not only did these news-feed modifications influence people’s language choices on the platform, but they influenced their real-life emotions as well.
Published in the Proceedings of the National Academy of Sciences, the study raised ethical concerns at the time. Cornell’s institutional review board deemed it inappropriate to mandate oversight from its human-subjects panel since the university’s researchers hadn’t participated in the data collection—that was all on Facebook, which did not seek consent or in any way notify those users that they had participated in a study.
“When entities feel entitled to experiment on human beings without informed consent, without accountability to anyone but themselves, that’s when bad things happen to research subjects,” wrote bioethicist Arthur L. Caplan, with journalism professor Charles Seife, both at NYU, in a response to the paper. “And it’s now clear that if we don’t insist on greater regulatory oversight of their ‘research,’ you are likely to be next.”
Tech companies are conducting psychological and social experiments on a global scale, and in private, without transparent oversight or broadly agreed-upon standards. It’s unprecedented, and it’s not being done to cure cancer or in any other way promote a measurably healthier society—the economic incentives simply don’t exist for this to be the case.
Technology companies have also enabled outside organizations—Cambridge Analytica is the infamous example—to collect data on people in order to influence what they see, to drive some kind of emotional response, to produce a desired real-life behavioral outcome. Facebook doesn’t operate with the ethical oversight imposed on research by government-funded institutions or universities. There are no IRBs dictating informed consent, and there appears to be little to no concern for the consequences these kinds of actions have on people individually or, in aggregate, on society.
Even if you don’t use Facebook or Twitter or Instagram or any of the other social media sites that have existed or will exist in the future, you are still living in a world where billions of people do, a world in which our digital and real-life behaviors, at least in the eyes of large tech companies, are available to be sold and manipulated, where the language we use and the way we feel is being guided by organizations whose only motivation is profit. In this way, and by default it seems, we’ve all become unwitting guinea pigs.
Because of my brother’s life and my own interest in science, I was aware of human research. But until HI-SEAS, I didn’t really know. Or rather, I hadn’t truly understood. It is so easy not to think about the willing and the forced donation of human bodies and psyches to science, to not wonder about how we know what we know about ourselves, to forget about the continuity of (and gaps in) bodies and knowledge. What would it look like if it wasn’t so easy to ignore the boundaries between us, to refuse to see what we owe each other, what is given, and what has been taken?