The Icepick Surgeon Read online
Page 16
In some ways, the Nuremberg Code was a tectonic shift in medical history. It made ethics an indelible part of medicine, and seventy-five years later, it still governs research on human subjects around the globe. In other ways, however, the code had little immediate impact in Allied countries. Doctors in those countries of course didn’t oppose it, but to them it seemed irrelevant. Only sickos commit abuses, they thought. No doctor in a civilized nation needed such a code.
If only. In focusing on the sickos, American doctors fell into a classic psychological trap: Excusing bad behavior among their colleagues simply because it didn’t sink as low as the worst possible case. We’re not as bad as the Nazis; therefore we must be okay. In truth, rogue American doctors were running some ghastly experiments of their own during the very same months that the Nuremberg Doctors Trial was taking place. The Tuskegee and Guatemala studies lacked the sadism of the worst Nazi work. But they also proved that so-called civilized countries needed the Nuremberg Code as much as anyone.
In 1932, several white doctors working for the U.S. government’s Public Health Service descended upon Tuskegee, Alabama, to study late-stage syphilis in four hundred Black men. Most of us think of syphilis as a genital disease, but if left untreated, the corkscrew-shaped bacteria that cause it can invade nearly every tissue in the body, including the heart and brain. PHS doctors wanted to study the long-term effects of this assault.
The PHS chose Tuskegee for several reasons. First, the surrounding county had an alarmingly high rate of infection, up to 40 percent in some areas. Second, the population was mostly Black, and earlier studies had suggested that syphilis affected Black people differently than white people; Black people seemed to suffer more syphilis-related heart disease, for instance, but fewer neurological complications. The PHS venerologists wanted to determine whether those findings were true. Third, as do-good government types—many had sacrificed lucrative careers in private practice to work in public health—the PHS folks sincerely wanted to help this downtrodden community. And make no mistake, many Black people in the community welcomed their presence. This was the nadir of the Depression, and things in Tuskegee were bad. A weevil infestation had wiped out the previous year’s cotton crop, and the county government had recently shuttered every public school. There was no money for health care, either, and the arrival of the PHS doctors and their promises of free physicals, free X-rays, and free bloodwork was a godsend.
To be sure, some Tuskegeans mistrusted the doctors. “White folks is sick just like us,” one patient remembered thinking. So why wasn’t PHS running parallel studies in white communities? Most local leaders, however, championed the research. The famed Tuskegee Institute ran medical tests to help out, and one Black doctor in town, who was also active in the civil rights movement, crowed, “The results of this study will be sought after the world over.”
The study started in 1932 with physicals and bloodwork for all four hundred men. The doctors then returned every few years to follow up on them. Sometimes the follow-up involved driving the men from their farms into a clinic. Sometimes the doctors did an examination al fresco, pulling the men under the shade of a tree next to their fields and drawing some blood. The doctors then compared these four hundred men to two hundred uninfected controls, to study the burden of syphilis on their health.
One point worth noting is that the men in the study already had syphilis before the PHS arrived. Many people today believe that the men were healthy beforehand and that the doctors gave them syphilis via injections, which isn’t true. But what the doctors did do—let the syphilis smolder untreated, sometimes for decades—was nearly as terrible.
Leaving syphilis untreated in 1932 was actually defensible. The standard treatment then involved drugs laced with arsenic and mercury. (As the saying went, syphilis was “a nighttime with Venus, a lifetime with mercury.”) So heavy-metal poisoning was a real concern. Plus, killing dormant syphilis bacteria often caused them to burst open and flood the body with toxins (the so-called Jarisch-Herxheimer reaction). It was sometimes better to let sleeping syphilis lie.
A U.S. Public Health Service doctor withdraws blood from the arm of a patient during the infamous Tuskegee syphilis study in Alabama. (Courtesy of the U.S. National Archives and Records Administration.)
However, the appearance of penicillin in the 1940s changed everything—or at least should have. Penicillin was far less toxic than earlier treatments and could cure syphilis in just eight days (arsenic and mercury cures took eighteen months). Yet even after penicillin became widely available in the 1950s, PHS doctors refused to treat the men in Tuskegee with it. Why? Because they’d set out to study the long-term effects of syphilis, and curing the men would bollix their research. So they let the germs fester instead. As one historian wrote, the study gave “the foreboding and morbid sense that the PHS watched, year after year, as the men died.”
PHS doctors, of course, didn’t see things that way. They considered their research virtuous. Yes, individual men in Tuskegee might be hurting, they acknowledged, but the public at large would benefit from the knowledge gained. They framed the suffering as a noble sacrifice—albeit without explaining why only Black men should make that sacrifice. Meanwhile, other PHS doctors were so focused on the biological mysteries of syphilis that they lost sight of the men as human beings. As one Tuskegee patient put it, the men were nothing but “guinea hogs” to them. One doctor even tried to suppress the publication of papers about penicillin because the drug wiped out syphilis too quickly for his liking, denying him the chance to observe the full course of the disease. (“My idea of heaven,” he once said, “is unlimited syphilis and unlimited facilities to treat it.”) His obsession with solving the “riddles” of syphilis blinded him to the fact that, while medical research can indeed probe some fascinating mysteries, the point of medicine isn’t to satisfy intellectual curiosity. It’s to heal people.
What’s more, PHS doctors repeatedly lied to the men to make the study run more smoothly. Sometimes these were lies of omission: To prevent the men from getting treatment elsewhere, the doctors never told most of them that they had syphilis. (At best, the doctors made allusions to “bad blood.”) There were lies of commission as well. Some men did know they had syphilis, so the doctors lured them into clinics with scams right out of a telemarketing playbook: Hurry in now, they told them in letters, or you’ll miss your “last chance for special free treatment.” But instead of providing treatment, they’d run dummy tests on them, or give the men excruciating spinal taps and claim to be injecting medicine.
In addition to the lies and indifference, the study also failed scientifically—which is an ethical issue in and of itself. Blood collected in the fierce Alabama heat often spoiled, and the methods used to detect syphilis were so inconsistent that doctors couldn’t even say for sure whether some men had the disease. Moreover, the data analysis was inexcusably shoddy. Several controls contracted syphilis a few years into the study; similarly, some of the syphilitic men either received treatment through outside doctors or took penicillin for unrelated infections, potentially curing them. But instead of dropping these cases from the study, PHS doctors simply swapped the men back and forth between the syphilitic group and the control group—a huge no-no. In all, this scientific sloppiness rendered the study’s results useless and should have torpedoed its credibility.
Now, given all the suffering in Tuskegee, harping on the data analysis might seem obtuse. But many bioethicists argue that, within medicine, sloppy science is ipso facto unethical science. It’s one thing to design a terrible physics experiment and fry some vacuum pumps or whatever. No one is really harmed there. But if you’re going to ask human beings to endure pain for medical research, then you’re duty-bound to design the experiment properly. Otherwise the data is useless, and the pain goes for naught. Parts of the Nuremberg Code emphasize experimental design for that very reason.
All of which is to say that Tuskegee was unethical on multiple levels. The victims include
d more than just the untreated men, too. In most cases, late-stage syphilis isn’t transmissible, but medical records made it clear that at least some of the men were contagious. By declining to tell the men they had the disease—or worse, falsely claiming to have cured it—the doctors greatly boosted the risk of the men spreading it to their wives or other sexual partners. Some of the Black scientists associated with the study suffered gravely as well. Consider Eunice Rivers.
Rivers was born in southeastern Georgia around 1900 and was no stranger to racial animus. When she was a young girl, a Black man in her hometown killed a white police officer in self-defense and fled, allegedly with her father’s help. In response, white vigilantes rode up to the Rivers home on mules and shot out their windows; one bullet nearly struck and killed her. She finally escaped town in 1918 by enrolling at the Tuskegee Institute. At first she wanted to study basket-making (the school had a strong crafts program), but her father challenged her to go into science instead. She eventually became a nurse and midwife with a public-health bent, traveling from house to house and giving expectant mothers hygiene tips—like spreading clean cloths or newspapers on their beds to ensure a sanitary delivery.
Nurse Eunice Rivers served as a key liaison for the Black community during the Tuskegee syphilis study, and was later condemned for her role in it. (Courtesy of the U.S. National Archives and Records Administration.)
However meaningful the work was, Rivers longed to escape Jim Crow Alabama, and when she received an offer in 1932 to become a shift manager at a hospital in New York, she decided to take it. Then she heard about the syphilis study. The white doctors needed a liaison in the Black community, and PHS offered her a job as a scientific assistant. The chance to join a real study intrigued her, and she was so eager to make a difference in her community that she turned New York down.
Rivers played nearly every possible role in the study. She helped recruit men when it kicked off, chatting them up at churches and schools. She kept men enrolled by tracking their addresses, and she drove them to checkups in her two-door Chevy with a rumble seat. (She whooped in delight at the bawdy tales they told her on the drives; they in turn pushed her car free whenever it got mired in mudholes.) She even delivered baskets of food and clothing to them on her own time to show the men she cared. Overall, she was the one truly indispensable person on the study, and in 1958 the U.S. government rewarded her with a medal, which she was fiercely proud of. In 1953, she was also first author on a scientific paper outlining the research methods used, a rare achievement for a Black woman then.
All that said, Rivers also did some dubious things on behalf of the study. The baskets of clothing and food certainly helped the men get by, but were also an implicit bribe to keep them enrolled. Worse, one local doctor remembered her discouraging—even blocking—men in her care from getting treatment3 for syphilis elsewhere, simply to preserve the integrity of the study. In some ways, then, she was no less complicit than the doctors running the experiment.
Rivers notwithstanding, there were scattered attempts to shut the study down. In 1955, a white doctor wrote a letter to PHS arguing that “[the work] cannot be justified on the basis of any accepted moral standard: pagan (Hippocratic oath), religious (Maimonides, Golden Rule), or professional (AMA code of ethics).” PHS officials ignored him. In 1969, a group of Black doctors submitted editorials to the New York Times and Washington Post denouncing the research, but the editors at both papers shrugged—it didn’t seem newsworthy. Scientists didn’t care, either. PHS doctors published thirteen separate papers on the study over its four decades, and made no attempt to hide what they were doing. The very first line in Rivers’s paper, for instance, mentions “untreated syphilis.” Indeed, that’s probably the most scandalous thing about Tuskegee: that everything was out there for the public to see, and no one with any power cared.
Given that nothing was hidden, saying the study was “exposed” in 1972 isn’t quite accurate. But that year, one of the whistleblowers who’d been denouncing the research—a libertarian Republican and National Rifle Association member—finally convinced an Associated Press reporter to dig into the study. When her story appeared a few months later, it exploded. Hundreds of newspapers and television stations picked it up, and the U.S Senate hauled PHS officials into hearings to grill them. The director of the Center for Disease Control (which had taken over the study from PHS) even got hanged in effigy by activists.
Most of the blame for Tuskegee fell, rightly, on the white doctors who initiated the study and refused to treat the men. But Eunice Rivers came under attack as well. When the first hostile stories appeared, she broke down weeping, and the media scrutiny got so intense that she was hospitalized for stress. Many people viewed her, as one historian put it, as either a “middle-class race traitor” or a benighted fool “who never really understands that her choosing the white doctors over the black men dooms her moral self.” That bit about “choosing the white doctors” is revealing. Rivers didn’t want to harm her men; many considered her a second mother, and her care packages got them through some desperate times. But as a Black woman in rural Alabama, her entire scientific career depended on the continuation of the study and her access to PHS doctors. Had she challenged them on their ethics, they almost certainly would have cut her loose.
Case studies in bioethics often take the form of melodrama. Nazi medical research is a perfect example: There are dastardly villains and innocent victims, and the outrage we feel is white-hot and uncomplicated. The PHS doctors weren’t Nazi-evil, but they do fall far to the sinful side. Rivers’s case is harder. She got stranded between her community and her aspirations, and she and her family struggled with what she’d done until the day of her death, and even beyond. Throughout the study, she was known as Nurse Rivers, despite having married in 1952 and becoming, officially, Eunice Verdell Rivers Laurie. But when Rivers died in 1986, her husband effectively masked her identity by putting just “Eunice V. Laurie” on her gravestone.
A half-century ago, the name Tuskegee made Black people proud. Rosa Parks was born there. George Washington Carver did his best work at the Tuskegee Institute, which Booker T. Washington founded. The Tuskegee Airmen were some of the bravest soldiers of World War II. Then PHS swept in and sullied the city’s name. And again, while there’s zero evidence that PHS doctors infected anyone with syphilis, that belief persists among many Black Americans today. (It’s even metastasized to include other ailments: one survey in the 1990s found that more than one-third of Black people believed that the U.S. government cooked up HIV in a laboratory to commit genocide in the Black community.) Sadly but understandably, the Tuskegee study continues to undermine public health. Studies have found that, rather than submit to doctors, many in the Black community prefer to ignore warning signs for diabetes, heart disease, and other ailments until it’s too late.
But the thing is, the idea of PHS doctors deliberately infecting people with STDs isn’t as far-fetched as it sounds. One of the Tuskegee physicians, in fact, John Cutler, did that very thing. Just not in Alabama, but farther south, in Guatemala.
Before getting into Guatemala, it might help to examine an exact contemporary of John Cutler. This doctor was a public-health crusader. He traveled to Haiti and India during his career and worked tirelessly to improve women’s access to healthcare in both countries. He arranged fellowships for gynecologists and obstetricians in developing nations to train in the United States, so they could return home and save women’s lives. He also condemned the moral panic surrounding AIDS during the 1980s, and refused to demonize victims for being gay. We’ll circle back to this doctor below, but he’s worth keeping in mind as a moral counterpart to John Cutler in Guatemala.
After graduating from medical school in Cleveland in the early 1940s, Cutler joined PHS and began working on the surprisingly pressing issue of venereal disease in the military. VD had always run rampant among troops (“short-arm inspections” were a regular part of service), but the toll during World War II was
projected to be staggering. Doctors estimated that the American military would lose seven million man-days of work to STDs every year, a labor loss equivalent to keeping ten full aircraft carriers at home. A few chemical prophylactics did exist then to prevent infections, but they had to be pumped down inside men’s urethras, a gaggingly uncomfortable process. Many GIs skipped the treatment and just took their chances.
Dr. John Cutler, who ran the notorious Guatemala STD experiments in the 1940s on behalf of the U.S. Public Health Service. (Courtesy of the U.S. National Library of Medicine.)
By 1943, however, military doctors had developed two new prophylactics—one a pill to swallow and one an ointment to spread on the outside of the penis. Cutler designed an experiment to test their effectiveness. It involved exposing 241 disease-free inmates in the Terre Haute, Indiana, penitentiary to gonorrhea (a.k.a., the clap) and seeing whether the pill or ointment prevented infection. Cutler chose Terre Haute because, as a biggish city in a region full of coal mines, there were scads of hookers around with fresh gonorrhea sores to harvest pus from.
Unlike with Tuskegee, the prisoners were fully informed of what would happen. They all signed waivers that disclosed, in plain language, the risks of exposure, and they were all promised treatment if the prophylactics failed. As for why on earth the prisoners agreed to be infected with gonorrhea, they got paid $100 each ($1,500 today), and the doctors eventually wrote letters of commendation to their parole boards. Their manhood was on the line as well. Unlike their peers on the outside, they couldn’t join the military and fight Germany and Japan directly. But as Cutler slyly pointed out, they could still do their part by joining his study and keeping the troops shipshape. Nowadays, ethical codes forbid the use of prisoners in medical research because they’re such a vulnerable population: they’re hidden away and liable to be abused, and dangling an early release in front of them effectively coerces them and compromises their ability to consent freely. At that time, however, using prisoners was commonplace and uncontroversial. It even had some scientific advantages: the men all lived in the same environment, eliminating variation, and they were easy to keep track of and follow up on. All in all, then, Cutler designed an ethically satisfactory study by the standards of the 1940s.