In the African-American community, a mistrust of doctors and medical research is widespread and deeply rooted in a history of involuntary, abusive and non-therapeutic experimentation on blacks documented since at least the eighteenth century.
In her acclaimed new book, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, journalist and bioethicist Harriet Washington traces this mistrust in the first comprehensive history of the medical mistreatment of African Americans.
Publisher’s Weekly praised Washington as a “great storyteller,” and named Medical Apartheid one of the best books of 2006, finding it “even at its most distressing, compulsively readable.” PW, Kirkus and Booklist each honored the book with starred reviews, and the Black Caucus of the American Library Association bestowed its Honor Nonfiction Award for 2007 on Medical Apartheid.
Washington’s book details horrific abuses by the guardians of health.
Africans found unfit by slave ship surgeons were routinely thrown overboard to die at sea en route to the Americas.
Physicians in the antebellum south believed that blacks were immune to pain and conducted hideous experiments on men, women and children without anesthesia.
More recent experiments include non-consensual and disproportionate sterilization of blacks like the “Mississippi appendectomy” performed on civil rights legend Fannie Lou Hamer.
Blacks were also the subjects of painful radiation and dermatological studies.
And, from 1932 until 1972, the U.S. Public Health Service in its Tuskegee experiments promised to treat hundreds of black men for syphilis, but actually provided no treatment, and instead watched the men die slow, painful deaths.
Harriet Washington is a Visiting Scholar at DePaul University School of Law, and a former Fellow in Medical Ethics at Harvard Medical School and at Stanford University. She has written extensively on medicine and ethics for publications from USA Today to the New England Journal of Medicine and the Harvard Public Health Review.
Robin Lindley: What prompted your interest in bioethics, and your new book?
Harriet Washington: I was always interested in bioethics. I started as a pre-medical student, like a lot of medical writers. When I finished college, I ran a small poison center for the university, and stumbled across case files showing a dramatic disparity in the way black and white patients with the same pathology were treated. I was most struck by how differently blacks were treated in research. I knew that participating in medical research was inherently risky, but protections are in place to limit the risk and to assure that people know the risks. All these protections seemed eschewed when it came to black people. The more I learned, the more I realized it was not part of the historical canon—this aspect of health care disparities was all but ignored.
That piqued my interest. When I became a journalist, I knew I wanted to do [the book], but not until 2002 when I did the clinical ethics fellowship at Harvard did I feel I had the tools to do an ethical analysis so that I would end up with something meaningful.
RL: When you told physicians of your plans for the book, wasn’t there disbelief about the history of medical experimentation on African-Americans?
HW: Several physicians told me that, including physicians in the history of medicine, which I found staggering. There is a resistance to acknowledging these things, but there’s no question they transpired. In the book, I use as references mainstream medical articles and physicians’ own writings.
RL: Can you discuss scientific racism in the antebellum period?
HW: We call it scientific racism now, but back then it was only science. The people who studied black people in the antebellum period were southern physicians because then 90 percent of black people then lived in the south. Physicians supported the enslavement system, and it probably couldn’t have persisted without the physicians who said blacks were inferior and made by the Creator to be the workhorses of the white man. It was the physicians’ role to help the planter in keeping slaves not healthy, but fit for work, and in keeping slaves subjugated.
There was conflation between medical treatment and punishment. A physician would jocularly advise a planter that a slave needed “nine drops of essence of rawhide.” There were physicians who actually prescribed physical punishment as “treatment” for ‘black diseases’—slaves [who resisted slavery]—who ran away, or didn’t work, or were intractable.
RL: One southern physician you write about is Dr. James Marion Sims, an esteemed, one-time president of the American Medical Association, who performed horrific experiments on black women and children.
HW: I thought he was a wonderful benefactor, the father of American gynecology—until I read his own writings. Now I know he was also an abuser of unwilling black subjects. I was staggered by the things he described. Sims, the so-called benefactor of women, often used the metaphors of imprisonment and of controlling and imprisoning a woman for her own good. He wasn’t referring only to black women, but his perfect subjects were enslaved black women who he bought or otherwise acquired to perfect distressingly painful, invasive reproductive surgeries that made his fortune.
He used black women. He performed 30 surgeries on one slave woman and, after repeatedly slicing and suturing the genitalia for four or five years, he perfected a repair for vesicovaginal fistula, a horrible complication of childbirth, and made his medical fortune.
He went north, headed the American Medical Association, and even went to France to become the toast of the Second Empire where he treated Empress Eugenie. All across the world, he’s usually spoken of as a wonderful hero, and that’s the face he turned to white women. But black women, and black men, saw a different face. He forced surgery [without anesthesia] on a black male slave named Sam. Sims blithely wrote about it in a medical journal, and the editors chimed in that he’d done a wonderful thing: he proved it was possible to operate on people whether or not they were willing.
RL: And Dr. Sims experiment on many women and children?
HW: About 13 women by my best count. At any one time, [Sims kept] at least five women in the shack he called a hospital, [but was actually] a laboratory where he confined people.
He also operated on several black children. He believed that a form of tetany, considered an infectious disease, could be treated in black children by re-arranging particular skull bones. He never explained how opening the skulls of infants and moving their bones around treated an infectious disease. Scientific racists believed that black people were less intelligent than white people [because] the skull bones of black children closed early, essentially trapping the brain before it could develop fully.
RL: Did any of these children survive these horrific operations?
HW: That’s a chilling thing. When these subjects are referred to, we rarely find out what happened. That wasn’t the point. He didn’t report if the slave infants recovered or died. In fact, with the surgery on captive women for vaginal fistula, he only records fixing a fistula of one woman, [and] never mentioned what happened to the others.
RL: And you write that researchers saw blacks as “clinical material,” and used the bodies of blacks for dissection in medical schools.
HW: When blacks were still enslaved, it was a simple matter because, as the property of the master, there wasn’t even a question of asking anyone else’s consent. Obtaining bodies for anatomical dissection was very difficult with a strong social sentiment against it. It was not only illegal, but socially reprehensible, to cut up a dead body. However, modes of practicing medicine were changing and people expected a physician to be familiar with the body. So whose bodies were used? Black people’s because they were so convenient. You simply went to someone who owned slaves and got their dead bodies.
Then the social landscape began changing. When slavery was abolished, you no longer could commandeer the bodies of black people with impunity—you had to be surreptitious, and there were several ways to do it. There were hospitals or wings of hospitals that were designated for blacks only where physicians would use black bodies with impunity. While they were alive, the people were used for clinical display—to display procedures or disorders. When they died, the bodies were simply moved to the anatomical laboratory.
However, this didn’t supply enough bodies, so physicians began taking fresh bodies from graveyards. After a while, laws banned this use of bodies, and medical schools became more circumspect. They began using black porters to obtain bodies. The Medical College of Georgia used Grandison Harris, a huge, strapping man. He was so strong, he could go to a black cemetery and pull bodies out with his powerful arms.
Fortunately for me, very specific documentation was kept on the bodies. In 1989, the Medical College of Georgia renovated an old laboratory. Construction workers found a cache of ten thousand human bones marked by anatomists in India ink and clearly discarded medical training material. Three-quarters of them came from the nearby black cemetery.
RL: So human remains were treated in effect as medical waste?
HW: Exactly. They found these bones jumbled together with broken test tubes and beakers, even with the bones of animals that had been used for medical research. There was no attempt to place them in any order, or invest the site with any dignity. This very sad scene was repeated at hospitals throughout the country.
RL: Can you describe the Tuskegee syphilis experiments?
HW: It started as a beneficent experiment in 1928 with Booker T. Washington and Julius Rosenwald, the founder of Sears Roebuck who had devoted himself to positive health initiatives to help black people—to start programs that they would take over. Unfortunately, the stock market crash in 1929 wiped out Rosenwald’s fortune so there was no money for that project.
The Public Health Service of the United States stepped in [in 1932], but public health physicians didn’t care about black self-sufficiency, and showed they didn’t care about black health either. They decided to take black people with syphilis and, instead of treating them, simply watched them. About 400 black men with syphilis were recruited under the guise that they would be treated. They were not told they had syphilis, but that they had “bad blood”—a folk term that could mean many things including venereal disease. They had 200 men as controls. For the next forty years, they watched these men die. The physicians were very open that their intent was to simply trace the progression of disease.
The physicians also wanted to validate their belief that syphilis treated blacks and whites differently. White people with syphilis were held to suffer horribly devastating neurological consequences [such as] deafness, blindness, paralysis, but [the researchers] said black people only had problems with their muscles and hearts, because the nervous systems of black people were so primitive and underdeveloped compared to whites. They took the data, manipulated it, and then falsely claimed they had proved that black people did not suffer any neurological consequences from syphilis, proving indirectly that black people had very inferior brains and nervous systems.
So the physicians were focused on everything except treatment. In the 1940’s, penicillin was found to cure syphilis. It was like a Holy Grail—as though scientists had now developed a shot to cure AIDS. The Surgeon General, Thomas Parran, had made finding a cure for syphilis his mission, so he and the Public Health Service were thrilled. Everyone got shots for syphilis, except for the men in the experiment. Most of the men died slow, lingering, painful deaths—and so did many of their wives, girlfriends and children.
In 1972, the study was stopped when Peter Buxtun, a young investigator for the PHS, discovered the study and told a journalist friend who wrote about it. When it hit the newspapers, and people in the United States—black and white—were horrified that the Public Health Service, the group that supposedly guards our health, would do this to a group of powerless, old black men.
In 1997, Bill Clinton issued an apology for the study. There were still a few survivors, and there was a dramatic and cathartic White House ceremony. It’s wonderful that he issued the apology, and it’s even better that part of the resolution was a bioethics center established at Tuskegee University. But all in all it’s very sad because subsequent events have shown that we didn’t learn what we should have. After the Tuskegee study—although historians speak as though it was the only important abuse of black people—there were many other abuses as bad or worse than Tuskegee.
RL: It seems you’ve done the definitive study of the Tuskegee experiment.
HW: It’s because like anyone who studies history, I had access to the work of earlier historians such as James Jones [author of Bad Blood] and Allen Brandt who had done good investigations. I took their work further by interviewing some important actors and addressing questions that had largely been ignored.
RL: Among the most chilling experiments you describe were the brain operations Dr. Orlando Andy performed on black children. Weren’t these fairly recent?
HW: It was in the 1960’s—not the antebellum past. Writing that part had me in tears, it was so upsetting. Dr. Orlando J. Andy of the University of Mississippi was performing lobotomies, which were done then, and it was disturbing because our understanding of the brain was cruder then. Andy presented it as therapeutic for boys with behavior problems. He used six-, seven-, eight-, nine-year-old boys who had been institutionalized. To say a boy had a behavior problem when you’re not a psychologist, when you don’t have psychological report, when you don’t have details, when the boy’s institutionalized and his parents are not part of the informed consent equation, it’s quite abusive.
What’s a behavior problem? Most six to nine-year-old boys are quite annoying at some time, but that doesn’t mean they should have parts of their brains taken out. One case Andy wrote up as an example of his best work was five repeated surgeries on the same black boy, precipitated by “a behavior problem” that nobody ever quantified.
When you look at the mores of the segregation-era south then, there was a very narrow range of behavior for black men and boys. Emmett Till, a 14-year-old black boy, was tortured and murdered on suspicion of whistling at a white woman. So for Andy, a non-psychologist, to say the boy had a behavior problem and that’s why he repeatedly went in and took out important areas of the brain is shocking. At that time, they didn’t understand all the functions of the amygdala, so he’d take out the amygdala, and when that didn’t help, he’d take out the fornix, and then he’d take out part of the frontal lobe. He notes what he removed, and how he tried to see what happened. It was very much research and not therapy, and very recklessly done.
And, by the end, these children who had lobotomies were barely functional. These children who had been functional could no longer walk or talk or had seizures. It was horrifying, and made worse by Andy saying he didn’t want his work restricted to young black boys. He felt that rioting blacks should have lobotomies, as did other neurosurgeons.
In the late sixties or early seventies, several physiciansgot a huge grant from the government to explore doing lobotomies. These lobotomies were actually performed on black prisoners, not white ones, in several state prisons. Here were doctors who had a very troubling agenda of performing lobotomies on black people whose politics they did not like, and this was done in prisons, which are civil rights deserts.
This mentality has not gone away. We saw it in New York City with the fenfluramine experiments where only blacks boys were allowed by protocol—no white boys were allowed—and they were given the toxic drug fenfluramine to monitor serotonin levels because researchers wanted to prove that these black boys had brain changes that would show them to be potential criminals.
The same thing happened in the 1970’s in Baltimore when a physician affiliated with Johns Hopkins looked for chromosomal abnormalities that he said could be tied to a propensity for violence. He looked at a pool of boys that was 85 percent black.
RL: Are there survivors of Dr. Andy’s haunting experiments?
HW: It’s likely there are survivors but, by the time of his writing, they had lost brain function and were institutionalized. They could still be lost in institutions. I am still haunted by this. It’s so frightening, especially when I see that the mentality that drove it has not gone away.
RL: And you describe research in prisons with captive pools of subjects.
HW: Yes. And last year, a government panel recommended reopening of prisons to research, and it’s almost certain prisons will be opened to research.
I’m very concerned about what’s happened recently with research in this country. We’ve got someone at the helm of NIH [National Institutes of Health] clinical trials who has adopted, in my opinion, a very cavalier attitude toward the rights of some research populations: prisoners seem to be one, and Third-World patients another. Subjects in Africa and other parts of the Third World have been treated horribly by American researchers. Things are done with them against their will, without their knowledge, and they’re offered much lower standards of research care and treatment—and this is justified as “practical ethics.” Practical ethics means we will do one thing in Guinea and another in Connecticut, that some people’s lives and rights mean more than others.
If you’re talking about the law, which gives minimal protections, a person has to give permission to participate in experiments. But in 1996, the law changed, and people can now be experimented on without their consent or their knowledge. If you’re unconscious and admitted to an emergency department, doctors can use you in a research protocol without asking your permission, without informing you. That 1996 federal provision has been used by companies that have devices to perfect and drugs to sell, and it’s been done with the blessing of some at NIH who are now at the helm. Things we don’t consider fair are now done with impunity, and legally. And ethicists use semantics to defend their actions.
RL: But non-consensual experimentation contravenes the Nuremberg protocols and other ethical protocols.
HW: The first sentence of the Nuremberg Code says, “The voluntary consent of the subject is absolutely essential.” But the Nuremberg Code is toothless, with no enforceable penalties for noncompliance. There are federal regulations that seek to legally constrain research institutions, but too often, the miscreants are never tried or punished. I’m not saying that the mass of physicians is amoral or bad. I believe the opposite is true. But I am saying they regard the Nuremberg Code as a good code for Nazi barbarians, but not anything to which they need to subscribe.
RL: What would you like your readers to take away from the book?
HW: Most of the change has been positive for black people and other research subjects. Most people are no longer forced into research or abused with impunity because they’re black. Research precautions do not perfectly protect people today, but the rampant abuse of yesterday does not exist anymore. That’s very positive, and I’m happy to acknowledge that.
The bad news is that our researchers use Third World and developing countries as their personal laboratory. There’s abuse very similar to what blacks went through in the early days of our republic. We have to demand that our researchers treat people abroad the same way they treat people here.
The other thing is for black people to understand that we have been abused, but that avoiding medical care and research is not something we can afford. It’s very dangerous for us, and is already harming us. For example, black people get hepatitis C more than white people, but the only conventional medication, Interferon, doesn’t work for black people. Part of the problem is that so few black people participate in research initiatives that we don’t know about problems soon enough.
Having said that, because there are still inequities and research is still dangerous, we also must charge government and researchers to tighten protections. The institutional review board (IRB) system, which is designed to protect patient subjects, does not work well and needs to be fixed. There also should be a course for research subjects to explain their rights, and how to protect themselves. Except for emergent situations, no one should be permitted to be a research subject who has not taken that course. Today, medical research subjects know only what the involved researcher chooses to tell them about the research, and that’s not good enough.