Medical Apartheid

We've all heard of the Tuskegee syphilis experiment and how black men were allowed to languish and spread this fatal disease in the name of medical research -- without their knowledge or permission.

In her recently released book, 'Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present,' Harriet A. Washington painstakingly documents how blacks -- whether it's slave women unwillingly having gynecological experiments done on them or artificial blood being used in inner city hospitals -- have been dehumanized and often brutalized by a profession which takes an oath to heal.

Unfortunately, Tuskegee was not an anomaly.

It's no coincidence, Washington explains, that blacks do not seek medical care until "the pain is too much" often forsaking preventative care because of stories like these or blatant disrespect at the hands of doctors.

Black Voices talks about this fascinating yet disturbing topic with medical ethicist, Harriet Washington.

Were there any surprises in writing the book?

My surprise was that I never dreamed how much I would find. I thought documenting the abuses would be a lot more difficult but it turned out to be frighteningly easy because I was able in large part to rely on things researchers themselves wrote. Until fairly recently, a lot of these researchers were unselfconscious about the things that they had done. They were talking to their peers -- other white males -- who shared their sensibility about black people, and of course, the other thing is arrogance. So it was amazingly easy. I probably had documentation for four times the things I addressed in the book.

Was it at any point difficult to write?

A few events were emotionally very difficult. I think the most salient ones were the abuse of children by neurosurgeons. Whites in the 1950s practiced psychosurgery which is cutting out portions of the brains of young black boys. These were children who were described as having, "behavior problems." No one bothered to specify or quantify what these behavior problems were. So on that thin premise, neurosurgeons like Orlando J. Andy of the University of Mississippi would subject these boys to surgeries where he repeatedly took out portions of their brain and then looked to see what would happen. And the results were predictable. He wrote a report on one child he did this to twice, in two different medical journals. And I read the tone of the report, I realized that he wrote it up twice because he was very proud of this. He considered this an example of his best work. And when I realized that, I broke down in tears. I was so upset that this could happen to a little boy.

What about the issue of so-called crisis care in our communities now -- that is only going to the doctor when disease is at a critical state? Do you think medical abuse has played a role consciously or unconsciously in this phenomenon in the black community?

I think medical abuse is the most important factor. There is a crisis care mentality. I've worked in emergency departments. I've worked in a psychiatric emergency department in an upstate teaching hospital and I saw that every single day. I would see black patients come in with a state of disease progression that you almost never saw. And when you'd ask them, "My goodness, why'd you wait so long to get care," their response was always something on the order of, "I couldn't take the pain any longer" indicating that they were much more afraid of medical care than from dying from their illness. So I believe that fear of medical care is driving black's aversion and it's not medical paranoia.

We've all heard about the Tuskegee syphilis experiment -- at least anecdotally. Do you think that plays a part in it?

I don't think it plays as large a role as people think. It's true the Tuskegee study is a highly publicized study, but you're right, people who have never heard of it are still afraid of medical care. And actually that's one of the points I try very hard to make in my book. The book is 15 chapters, I devote only one to the Tuskegee study because so many other things happened. The Tuskegee study got a lot of attention and press, [and] these events did not get a lot of attention and press, they're not dwelt upon in the history of medical books. But black people, we have a strong oral tradition. We warn each other about what can happen to you in a hospital. And sometimes these warnings are a bit exaggerated, but often my research has turned up the fact that they're either rooted in the truth or they're accurate. The fear of medicine is based on real events. And real events go way beyond -- way before and way after -- Tuskegee.

What about clinical trials? Many blacks don't take part -- are we afraid or are we not being sought out?

Both. Another really important theme in my book is that everyone -- including experts -- tend to have this binary approach. Meaning an either/or approach. Either we're afraid of medical care or we're not being sought out. And what I found out is often both things are going on. In fact, something else is going on -- we're not sought out for clinical trials, we're afraid to engage in them, and when we have interacted with the medical system, the medical system often abuses us or, which can be just as bad, medical personnel treat black people as if they're unwanted. Or they're perceived as disdainful and offer different tiers of care to us. So all these things add up to the fact that when you look at participants in biomedical research, one percent are African-Americans. One percent. We're almost thirteen percent of the population. And this is presenting a very heavy toll for our health. In terms of medical research for today, we're putting ourselves in grave danger.

What do we need more of?

We need more education about medical research. It's more than clinical trials by the way, because everything used in medicine in this day of evidence-based medicine has to be tested. So we're talking about devices, we're talking about surgical procedures. All these things must be tested. And sometimes black people do react differently. Not necessarily because of some inherent physiological genetic factor, but we have a lot of sociological factors that are different from whites -- more poverty, all kinds of things. So it's very important for us to be included. And yet, we're not being included. So we need to include ourselves, but of course we need to protect ourselves at the same time because abuses still do occur.

For more information on the book 'Medical Apartheid,' Ms. Washington's latest endeavors or medical and clinical trials (under "Guide to Research") please go to www.medicalapartheid.com.