Taken aback by the outlandish proposition, William Harper wasn’t sure he had heard the physician’s offer correctly. His boss, the acclaimed dermatologist and University of Pennsylvania professor Dr. Albert M. Kligman, had just offered to pay him $150 for permission to transplant a piece of Harper’s arm to his face, and a piece of his face to his arm. The bizarre request came with no reason or explanation. But everything in the jail at that time—especially the medical portion—was pretty strange. Half of those behind bars sported bandages and medical tape—not from prison gang wars or exercise-yard brawls, but from participation in university-orchestrated clinical trials. Everyone—sentenced or unsentenced—seemed to be a test subject.
Awaiting trial in Philadelphia’s Holmesburg Prison in the 1960s and desperate for money like everyone else in the jail, Hop (as he was known to his friends) had been hired to work in Kligman’s research program. He recruited inmates as test subjects, distributed medication to those in the trials, and made a few extra dollars occasionally volunteering as a human guinea pig himself. The extra dollar or two a day he received in exchange for getting an injection slathered with some unknown substance, or swallowing some foul-tasting milkshake concoction, kept him stocked with commissary items and helped him pay for a lawyer. Not all the experiments were pain-free and without consequences. But Kligman’s weird surgical notion—“having body parts moved around,” as Hop phrased it—was even more unusual than the normal craziness that transpired in Pennsylvania’s long-running prison testing program. Despite his reservations, Hop eventually agreed to the procedure. “The money,” he told me, “was too good to pass up,” so he underwent the skin transplantation. For the rest of his life, he had a fingernail-size piece of his bicep on his lower lip and a similar-size piece of his lip permanently planted on his arm.
Kligman, who later admitted he felt “like a farmer seeing a fertile field for the first time” during his initial visit to the prison, was quick to realize the jail’s research opportunities and economic potential. He would go on to single-handedly transform a portion of a big city’s criminal justice system into the nation’s largest clinical-trial factory, where, on any given day, hundreds of incarcerated men and women were being used as laboratory material for a bewildering array of medical experiments. In addition to testing soaps, hair dye, deodorant, toothpaste, shampoo, diet drinks, and other commercial products, prisoners were also exposed to dioxin, radioactive isotopes, and chemical warfare agents. There was also the presence of an industrial-scale Phase I drug testing program prized by Big Pharma. By the end of its nearly quarter-century run, in 1974, the Philadelphia prison system had become a one-stop shop for human experimentation. Anything—regardless of its ethicality or toxicity—that a private corporation (Dow Chemical, Johnson & Johnson, R.J. Reynolds) or government agency (US Army, CIA) wanted tested on humans could be realized through a simple rental contract for access to Dr. Kligman’s “acres of skin.”
During that period, few people in either the medical or correctional systems raised concerns about it or challenged the wholesale use of a mostly black, imprisoned population as raw material for scientific research. A witness to the peculiar prison testing operation in its final years, I often questioned the practice when talking to custodial staff and colleagues but was repeatedly told to “mind your own business,” assured “Penn had the best doctors,” and pointedly advised to “stop asking questions if you know what’s good for you.” Like so many others, I remained silent.
The regrettable but all-too-common phenomenon of medical personnel “turning a blind eye” to unethical and injurious practices over long periods of time is the moral problem that University of Minnesota philosophy professor Carl Elliott addresses in his thought-provoking new book, The Occasional Human Sacrifice. He tells the stories of those rare and extraordinary individuals—perhaps even America’s bravest whistleblowers—who refused to be silenced, among them, Peter Buxtun, Martha Stephens, John Pesando, and Avir Kagan. However, as Elliott observes, they are so unappreciated that “most ethicists have never heard” of them or their heroic contributions.
Take Buxtun, for instance. If it were not for his steadfast commitment to end the infamous four-decades-long Tuskegee syphilis study, that piece of ill-conceived, racist science would have gone on many years longer. A few years ago, in his apartment overlooking San Francisco Bay, Buxtun (who passed away earlier this year) told me his family had been fortunate enough to escape the Holocaust. Resettled in America, he grew up on the West Coast and, after graduating from the University of Oregon, served as an Army medic during the Vietnam War. On his return stateside in the mid-1960s, he had taken a position as a venereal-disease tracker in the Castro District of San Francisco, for the US Public Health Service (PHS).
Overhearing a conversation at lunch one day, Buxtun was mystified to learn of an unusual drama playing out in Alabama, where a mentally ill man with syphilis “was not supposed to be treated.” The man was part of a PHS study that prevented treatment. “I didn’t understand what they were doing,” Buxtun told me. Curious, he called the Communicable Disease Center (then an agency of PHS, now the Centers for Disease Control and Prevention), and said, “Hey, what do you have on this Tuskegee Study?”
As Elliott recounts, a “brown manila envelope” soon arrived in Buxtun’s mailbox, illuminating one of the stranger pieces of twentieth-century medical research: “Tuskegee Study of Untreated Syphilis in the Human Male.” Shocked by its non-therapeutic design and decades-long history, Buxtun viewed the experiment on hundreds of African American sharecroppers as “an autopsy-oriented study” that wanted participants “dead on a pathology table.”
When Buxtun told his colleagues what he discovered and that he was going to voice his concerns to department officials, he was immediately counseled to reconsider his plan. “When they come to fire you,” his boss cautioned him, “forget my name. I’ve got a wife and a couple of kids. I want to keep my job.”
Buxtun persisted. He wrote letters repeatedly informing his superiors that their Tuskegee exercise was fraught with serious moral and political problems. He insisted the study was unethical by contemporary standards. After his calls and letters became a nuisance, Buxtun was summoned to CDC headquarters in Atlanta, where he was given a dressing-down by departmental bigwigs. Their message was clear: He was too insignificant to know the rudiments of scientific investigation, and he had no business questioning PHS policy or initiatives.
Undeterred, Buxtun continued to oppose the misguided Tuskegee exercise, but he only achieved success years later, in 1972, when he got the study’s file into the hands of an Associated Press correspondent. That crucial connection eventually led to the stunning front-page New York Times headline, “Syphilis Victims in US Study Went Untreated for 40 Years.” The embarrassment and public outrage finally put an end to what would become known as the worst instance of “institutionalized medical racism” in American history.
Elliott also examines others who had the gumption to call out nefarious practices. One such was Mike Wilkins, who helped divulge the appalling conditions and troubling hepatitis research at Willowbrook State School for intellectually disabled children, in New York. Another, John Pesando, spoke out against the Fred Hutchinson Cancer Research Center’s bone-marrow-transplantation program. And Martha Stephens illuminated the University of Cincinnati Medical Center’s lethal full-body radiation experiments during the 1960s. Elliott then goes abroad to tell the stories of the cervical-cancer debacle at the National Women’s Hospital in Auckland, New Zealand, and Paolo Macchiarini’s deadly synthetic-trachea scam at Sweden’s once well-respected Karolinska Institutet. These vignettes not only cast light on a few brave souls who refused to be intimidated but also bring out the far-reaching consequences of ethical lapses, such as the widespread skepticism of scientific research and the growing number of people who reject the credibility of public-health measures.
Carl Elliott’s foray into cataloging the stories of whistleblowers originated in part from his experience as a truth-teller doing battle with his own employer, the University of Minnesota. In the summer of 2008, Elliott learned of the suicide of Dan Markingson, a clinical-trial subject testing the antipsychotic Seroquel. The more Elliott learned about the young participant’s bouts with mental illness, his mother’s opposition to her son’s participation in the study, the “troubling history” of the school’s psychiatry department, and the university’s “petty cruelty” in countersuing the mother of the deceased for $56,000, the more he began to feel “the first small flush of shame.”
Elliott’s concerns about this tragic episode were brushed aside by school administrators. He was told that if anybody should be blamed for the suicide, he “should blame Mary Weiss,” Markingson’s mother. Elliott admits he “wasn’t prepared to be patronized.” As he writes, “I didn’t expect my comments to be met with eye-rolling and sighs. I didn’t anticipate an introductory lecture on the necessity of the occasional human sacrifice on the long, glorious march of scientific progress.” He could have turned away and gone about his business like many others at the university, but “something about this case made it seem like a personal test.”
Recognizing that bioethicists were not “watchdogs” but “show dogs” propping up academic medicine no matter how commercial or corrupt, he decided he didn’t want to become one of the pack. He started to speak up, encourage petitions, and write articles, such as a revealing piece on the Markingson case for Mother Jones. Like Peter Buxtun, Elliott had made a nuisance of himself in the eyes of both university colleagues and administrators. Not only did his efforts prove unsuccessful, but he also lost friends, received “ominous threats,” and faced a “hostile” atmosphere at the school’s Center for Bioethics.
Eventually, he would gain allies in the Markingson cause, win support for a legislative investigation, and savor a “stunning rebuke” of the university’s actions. There were, however, “no apologies, no mea culpas,” and no sense of triumph at the end. As Elliott reflects on his personal crusade, “The occupational hazard of whistleblowing is an inability to stop ruminating over the past…in order to convince yourself that you acted honorably. I still feel that impulse, but I don’t really have the stomach for it anymore.” He admits mistakes: his “dismissive attitude toward colleagues,” and his stunts, such as building a black coffin for a group of students in white coats to carry and tweeting a picture of his twelve-year-old daughter holding “a guinea pig while wearing a school lab coat with money spilling out of the pockets.” Today, says Elliott, “I find it hard to explain. All I can tell you is that I was gripped by an obsession that would not turn loose.”
But to those of us who have been in similar battles with powerful institutions that have shunned ethical norms, committed crimes, and harmed people, such single-minded commitment and creative instinct seem clearly necessary to bring attention to the fight for justice. Few will find The Occasional Human Sacrifice an uplifting read, but it will shed light on the dark subject of medical abuse and the heroic actions of those with the moral courage to stand up, speak out, and refuse to be intimidated.