by Kate Greene
Because of our differences, we were often learning and relearning each other’s problem-solving approaches, personalities, language quirks, and food preferences. But soon we realized that our diversity helped us solve various problems that came up, like designing new scientific experiments or analyzing data or building furniture or testing out the 3-D printer or finding ingredient substitutions for dinner. Personally, I liked this diversity and the occasional confusion or friction that it produced. It kept things interesting.
But there are all kinds of ways to find diversity even within a single-gender group of people. “When I’m sometimes asked when will there be enough women on the Supreme Court and I say, ‘When there are nine,’ people are shocked,” Justice Ruth Bader Ginsburg has said. “But there’d been nine men, and nobody’s ever raised a question about that.” What if, per Ginsburg’s suggestion, as on the U.S. Supreme Court so, too, in space.
V
GUINEA-PIGGING
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, treatment
s, 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.