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 18th century.
In her acclaimed new book, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (Doubleday), 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. 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 the 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. In the 1960s, a neurosurgeon removed parts of the brains of Black boys to regulate “behavior problems.” 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.
What prompted your interest in bioethics, and your new book?
I was always interested in bioethics. 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. 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.
When you told physicians of your plans for the book, wasn’t there disbelief about the history of medical experimentation on African-Americans?
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.
Can you discuss scientific racism in the antebellum period?
We call it scientific racism now, but back then it was only science. 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.
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 ran away, or didn’t work, or were intractable.
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.
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.
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’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.
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 rearranging particular skull bones. He never explained how opening the skulls of infants and moving their bones around treated an infectious disease.
Did any of these children survive these horrific operations?
That’s a chilling thing. When these subjects are referred to, we rarely find out what happened. That wasn’t the point.
And you write that researchers saw Blacks as “clinical material,” and used the bodies of Blacks for dissection in medical schools.
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.
When slavery was abolished, you no longer could commandeer the bodies of Black people with impunity — you had to be surreptitious. There were hospitals or wings of hospitals for Blacks only where physicians would use Black bodies with impunity. While they were alive, the people were used 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. 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 10,000 human bones marked by anatomists in India ink and clearly discarded medical training material. Three-quarters of them came from the nearby Black cemetery.
So human remains were treated in effect as medical waste?
Exactly. They found these bones jumbled together with broken test tubes and beakers, even the bones of animals. 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.
Can you describe the Tuskegee syphilis experiments?
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 had 200 men as controls. For the next 40 years, they watched these men die.
The physicians also wanted to validate their belief that syphilis treated Blacks and whites differently. 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 1940s, penicillin was found to cure syphilis. 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, 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.
Among the most chilling experiments you describe were the brain operations Dr. Orlando Andy performed on Black children. Weren’t these fairly recent?
It was in the 1960s. Writing that part had me in tears, it was so upsetting. Dr. Orlando J. Andy of the University of Mississippi was performing lobotomies, and presented [them] as therapeutic for Black boys with “behavior problems.” He used six-, seven-, eight-, nine-year-old boys who had been institutionalized.
And, by the end, these children were barely functional.
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 physicians got 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. These doctors 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 fenfluramine experiments where only boys — no white boys — were given the toxic drug fenfluramine to monitor serotonin levels, to prove that these Black boys had brain changes that would show them to be potential criminals.
And you describe ongoing problems with research.
Yes. 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.
The first sentence of the Nuremberg Code says, “The voluntary consent of the subject is absolutely essential.” But the Nuremberg Code [has] 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.
What would you like your readers to take away from the book?
Most of the change has been positive for Black people and other research subjects. Research precautions do not perfectly protect people today, but the rampant abuse of yesterday does not exist anymore. The bad news is that our researchers use Third World and developing countries as their personal laboratory — similar to what Blacks went through in the early days of our republic. We have to demand that researchers treat people abroad the same way they treat people here.
The other thing is for Black people to understand that avoiding medical 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. Today, medical research subjects know only what the involved researcher chooses to tell them, and that’s not good enough.
Interview By ROBIN LINDLEY, Contributing Writer
Robin Lindley is a Seattle attorney and writer who covers international affairs, human rights, politics, law, medicine, the media, and arts. He was a chair of the World Peace through Law Section of the Washington State Bar Association, and a staff attorney with the U.S. House Select Committee on Assassinations on the investigation of the death of Dr. Martin Luther King, Jr.