Medical ethicist and writer, Harriet Washington, has been a fellow at the Harvard School of Public Health, a Knight Fellow at Stanford University and a medical columnist and journalist for several national publications. Her new book, “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present” (Doubleday, $27.95), chronicles the medical abuses of black patients that has led to a state of distrust and guarded suspicion of the medical establishment. Real Health’s Nicole Joseph talked to Washington about black invisibility in medical history, the unthinkable experiments performed on our ancestors and how medicine can help heal the lack of trust.

Real Health: Why did you decide to take on the task of writing Medical Apartheid?

Harriet Washington:  I spent a lot of time looking at period medical literature, and I noticed that though there was a great deal of information about the history of medicine and medical ethics, it was almost devoid of issues affecting black people. You have a handful of books that talk about one institution or one experiment, like “Bad Blood” by James Jones, which deals with the Tuskegee Syphilis Study, and a very good book, “Bones in the Basement,” which deals with the [unauthorized] use of black bodies for anatomical dissection at a [19th century Georgia medical college].  

RH: Can you describe some of the experimentation that took place?

HW: I found so many abuses that there’s no way I could have written about all of them. Even if I had somehow been able to cram them all into a book – which would have taken an encyclopedia-- there wouldn’t have been space to analyze them. Informed consent was completely ignored when it came to blacks in the 1800s. No one ever asked a black person’s permission to perform experiments, even though this was an iron clad rule that was strictly observed when it came to white people. They would ask permission of the [black] person’s owner.

Researchers apportioned all the risks [of their studies] to black people and all the benefits to white people. An example is Dr. James Marion Sims’ vesicovaginal surgeries for vesicovaginal fistula [an abnormal passageway that forms between the bladder and vagina, often caused by childbirth]. He took only black women and tested these very painful, invasive surgeries against their will, and then when he perfected it, the focus was on treating white women. The most famous hospital that treats fistula is named after Dr. Sims – you can’t invent an irony like that.

RH: How did you find evidence of medical abuses dating all the way back to the days of slavery?

HW: The researchers who perpetuated these abuses wrote them up for medical journals! They left notes in their memoirs; they were quite proud of their work. Back then, there wasn’t any social approbation for abusing a slave.

RH: So the physicians weren’t exactly performing the experiments undercover?

HW: No, these were the people who tended to be at the very top of their professions and were held in very high esteem by their peers. Medical heroes. If they all looked and sounded like someone from a Frankenstein novel – someone of questionable scientific pedigree who works alone in a dark lab at night -- it would be a lot easier to avoid them. But unfortunately, it was the exact opposite. Samuel Cartwright, for example, had been dubbed as the preeminent expert on black physiology, and yet, this is the man who first described and defined imaginary black diseases that don’t exist at all. You cannot tell by looking at pedigrees who abuses people and who doesn’t.

But there [has been] a very strong investment in shrouding the fact that it’s race and not socioeconomics that has put people at risk, and to hide the racial nature of the studies.

RH: You’ve received a lot of praise for the book. Have you encountered any opposition?

HW: I remember when I first spoke to my fellowship director at Harvard about it. I didn’t even get out the first sentence before she told me that I couldn’t write this book. She said that [I was] going to make black people afraid of medicine and afraid of medical research. I said no, I’m not-- the people I’m writing about have already done that.

RH: So what needs to happen for black people to move past this mistrust and protect themselves today?
 
HW: We have different challenges now. We’re not being thrown in pits. Today, our challenges are more subtle, but they’re just as bad. Now, we have to worry about being included in research. History has taught us to distrust people with a medical agenda, but because we don’t participate in trials, we’re beginning to be left behind. We need our medical associations -- the National Medical Association, the Association of Black Cardiologists—to make the education of black people around clinical research a priority. One scenario that I think [could work] is for the government to institute a patient education course. I think the only people in this country who should be allowed to enroll in clinical trials are people who have completed an education course where they [learn] all about how the medical research system works and all about the pitfalls and the advantages.