TONY COX, host:
This is NEWS & NOTES. I'm Tony Cox in for Farai Chideya, who is on vacation.
The medical exploitation of African-Americans has caused mistrust among patients and the medical industry. The most noted case is the Tuskegee experiment of the 1930s. Three hundred ninety nine black men in late stages of syphilis were never told they had the disease. Then, when they were treated by doctors, they had no intention of curing them. This history of involuntary medical experimentation has created a complex relationship between black patients and non-black medical providers.
NPR's Farai Chideya recently talked to Harriet Washington, bioethicist and author of "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present." Washington began by explaining the incident that prompted Fannie Lou Hamer to become a civil rights activist.
Ms. HARRIET WASHINGTON (Author, "Medical Apartheid"): Essentially what happened was she had undergone what she was told was an operation to remove what she described as a knot in her stomach. I believed it was probably a benign uterine fibroid, a very common condition among African-American women.
And not until she was back at the plantation where she worked and lived did stories began circulating. Apparently the owner's wife was a cousin of the surgeon who performed the operation. And she knew, although Fannie Lou Hamer did not, that Fannie Lou Hamer's uterus had been removed, rendering her sterile.
This was a very common practice. It was non-consensual. And gynecological surgeons often rendered black women sterile without their knowledge while they were giving birth or undergoing other sorts of medical procedures.
And Fannie Lou Hamer, who always spoke of wanting to have a family, was devastated but also angered by this. And this is what inspired her to, you know, investigate political action as a means of seizing power. She tried to register to vote, was thrown off the plantation, and the rest as they say is history. She went on to become one of the most important civil rights leaders and symbols of the era.
CHIDEYA: Why did doctors go around sterilizing black women, and how common was it?
Ms. WASHINGTON: Well, it's not a, you know, not a simple question at all. It's actually a very key question. It's very interesting because up until the abolition of slavery, black fertility was prized. It was very important for black women to breed more children who were more slaves and therefore a very important source of wealth for owners.
After slavery was abolished, these children are no longer valued. And the tenet for scientific racism which medical science had used to justify and excuse many abusive practices and abuse of research practices were then expanded. Black people were sterilized at much higher rates than white people, and they were sterilized because they were posited as being both biologically and intellectually unfit parents.
CHIDEYA: This is one specific area of what you call medical apartheid. What is medical apartheid?
Ms. WASHINGTON: Medical apartheid has both commonly been used to refer to the race-driven, very wide disparities in access to health care, quality of health care and protection of human rights. All these racial disparities have led to such a wide gulf, a gulf that's really riven our nation to the point where, 10 years ago, the health of Harlem men more closely resembles Bangladeshi's than their Manhattan neighbors. And this is the picture throughout entire country. Black people are dying in droves of detectable, preventable, curable diseases.
This huge disparity has its roots in unexplored history, which is promulgated at the beginning of slavery to justify enslavement. And medical abuse of blacks still exists today. And a lot of these racist beliefs, which are not scientifically supported but have been embraced by scientists, have driven the wide gulf in health care.
CHIDEYA: One of the historical incidents that provoked this disconnect between African-Americans and the medical establishment was the Tuskegee experiment. Tell us about what was perpetrated.
Ms. WASHINGTON: The Tuskegee syphilis experiment, which is properly called the Public Health Service Study of Syphilis in Untreated Negro Males, is the most iconic symbol of abuse, of racialized medical abuse in research. It ran between roughly 1932 and 1973.
In the late '20s, Julius Rosenwald, who was the owner of Sears, Roebuck and Company, and Booker T. Washington decided to embark on a series of initiatives, in part to eradicate infectious diseases such as syphilis from the denizens of Macon County, where Tuskegee University was located. But Rosenwald lost his money in the stock market crash. And as a result, the Public Health Service steeped in. But the Public Health Service physicians never shared their goal of black self-sufficiency or black initiative to address health.
The Public Health Service had a very different agenda. They simply wanted to study the progression of syphilis in black men. And they not only wanted to observe these men without treatment, but they also were hoping to validate their belief in a racially dimorphic difference of syphilis in blacks and whites.
Again, the tenets of scientific racism held that black people were less intelligent with underdeveloped nervous systems, however, were very strong physically. And the PHS physicians wanted to prove that syphilis did not attack the nervous systems of blacks because their nervous systems were so, quote-unquote, "primitive."
Now, not treating these men of course condemned them to suffer the ravages of syphilis - not only them, but their children, their wives, their girlfriends. And essentially, this observational study resulted in the PHS physicians waiting for these men to die. It was very important for them to be able to autopsy them in order to try to prove their theory.
And that's exactly what happened. For 40 years, they watched the men and waited for them to die.
CHIDEYA: There are people who keep this legacy alive. But it lives in more than just books like yours and in fictionalized works. Doesn't it live really in the black psyche or how we react to medical professionals?
Ms. WASHINGTON: Absolutely. I think that the fear engendered by the widespread publication of a study has been very powerful in that for many black people it validated fears that they had.
CHIDEYA: Let's move forward. You were not just talking about the past. You're talking about the present. And in some cases towards the end of your book, the future of how race and medicine have interacted. What is one of the most troubling questions of medical experimentation that has gone on recently with African-Americans?
Ms. WASHINGTON: Experimentation with children - extremely troubling. Experimentation with children is always tricky because children cannot give consent, and my research has found that their parents are actually not always the best people to render consent. That's troublesome enough. But what's happened with African-American children is that their parents are much more likely to be bypassed by the system.
African-American children are much more likely to be subjected to non-therapeutic medical research, research that cannot help them. They're also much more likely to be residents of juvenile institutions or otherwise have their parents removed from the informed consent equation. So we've got a huge pool of African-American children who are subjected to non-therapeutic, sometimes abusive research, for which nobody who is close to them and has their interest at heart has ever given consent.
In the 1970s, Johns Hopkins University sanctioned a researcher who was looking at a genetic anomaly - the XYY. And he was saying that children with this particular genetic anomaly might be more impulsive, which is often sociological parlance for violence.
So he decided to investigate this question, but he investigated by looking at a population of thousands of boys, 85 percent of whom were black. Fast forward 30 years, in New York City, the New York Psychiatric Institute and several revered universities, including Columbia University, engaged in a similar research looking at possible genetic roots of violence, and they did that by looking at only blacks. I read the protocol, which specifically excludes whites. So we have this very tenacious pattern of looking at genetics of violence, but only looking at black boys.
CHIDEYA: Who has oversight of this? Why has there not been more oversight of how these experiments are conducted?
Ms. WASHINGTON: Excellent question. Various federal agencies, most directly the Office for Protection for Research Risks - they are supposed to enforce the Code of Federal Regulations, which says that if you have healthy boys, they cannot be subjected - healthy children, I'm sorry - they cannot be subjected to research that might have more than a, quote-unquote, "minimal risk." And that's how they exonerated these researchers. They looked at the study and decided it had only comprised minimal risks.
I disagree. Here's a study in which boys were given a chemical which has been shown to be poisonous, cardiotoxic, fenfluramine, half of the phen-fen weight combination. It was taken off the market because it was so dangerous, yet it was given to these young boys.
In preparation for the experiment they were taken off all their medications, including medications for life-threatening conditions like asthma, for a week. They were hospitalized overnight. Food was withheld. This constitutes more than minimal risks in my opinion, and yet the government decided that this was an acceptable thing to do to healthy boys.
CHIDEYA: Does this pattern effect how African-Americans are able to advocate for our own health care?
Ms. WASHINGTON: Absolutely. Although it may seem a strange message for someone who has written a book like this, I think it's very important for African-Americans to embrace medical research after, of course, we've educated ourselves.
In a country where we constitute about 13 percent of the population, we constitute one percent of voluntary research subjects. So we're clearly very weary of medical research, and that is harming us.
So if we cut ourselves off from experimental therapies, we're cutting ourselves off from many possible treatments. Also, when we are not present in sufficient numbers in medical research, we are victimized because a drug that may not work as well for us, we will not know that.
CHIDEYA: And what about people who are not interested in research per se, they don't want to volunteer for clinical trials, but are just concerned, well, gee, if I go to the doctor, am I going to be put in a situation that is oppressive. Should we wholeheartedly embrace going to the established medical community with all of our needs.
Ms. WASHINGTON: We have to. I don't think we have a choice there. You have to, number one, find a primary-care physician. Find someone you can trust, because if you're not working in partnership with a physician, your quest for good health is already sabotaged. It's absolutely essential. We have got to find a way to put our fears behind us or conquer them and embrace the health-care system.
We got the greatest health care system in the world in many aspects. And yet African-Americans have an understandable weariness, which is cheating us of years of life and health. So find a doctor who you can trust and work with him or her to improve your health.
CHIDEYA: Well, Harriet, thank you so much.
Ms. WASHINGTON: It's been my pleasure, thank you.
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COX: That was NPR's Farai Chideya with Harriet Washington, author of "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present." To read excerpts from the book and to see pictures, go to npr.org.
Just ahead, the president seeks new funding for the fight in Afghanistan, and stop worrying about that clutter - messy is the new neat.