Subtitle: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.
Well, this read left me a bit shattered, not because it’s so graphic, but because it’s so true and it hasn’t stopped – even in this day and age. This is a well-researched look at the history of medical apartheid, which means, basically, the history of medical experimentation on African Americans from the era of slavery to the present day. It’s an incredible read about an important (and much neglected) topic and although it was one of the hardest reads I’ve had in a long time, it’s an important addition to the history of African Americans here in the U.S.
I think that most Americans are aware of the Tuskagee syphilis experiment from 1932 to 1972 under the auspices of the U.S. Public Health Service. This was a long-term experiment to observe the natural progression of syphilis in untreated subjects, but under the inexcusable idea that the subjects (i.e. the people in the study who had syphilis) believed that they were getting medical care when in fact, quite a few weren’t – and just so medical professionals could see what happened in the lifetime of a poor syphilis patient.
These patients were severely economically disadvantaged (mostly sharecroppers) and poorly educated, and included 600 people who believed that they were receiving free medical care, meals and free burial insurance for participating in this study, a study that even gave 201 participants syphilis (who didn’t have it before), and none of whom were given penicillin (despite all the evidence that this fairly new antibiotic would cure their disease). (Sorry – that’s a rather long sentence, but I trust that you can keep up.)
(It’s insane that this happened, and continued to occur until the 1970’s. My god. I don’t even have words to put here to describe how PO’d I am at this situation. It’s beyond my vocabulary.)
And you know what’s worse? That the medical establishment has continued to abuse this population ever since slavery, and it’s happened over and over again. (And when you read this book, I hope you’ll feel as disgusted as I am.)
One more example that’s more modern: there are several examples of medical studies looking at new technology (e.g. artificial medical devices or treatment approaches) that are totally based on studies filled by African-American participants. And yet when the final device is approved and comes to market, the population who tested it for the manufacturers are actually now least likely to afford access to its benefits. Grrrrrrrr.
Back to the book: Washington has done an excellent job writing this book through the perspective of her journalistic lens, and the book’s divided into three parts: the first is about the history of medical experimentation wrt the African-American population; the second is about more recent cases of medical abuse and research, and the third examines how this history has impacted African Americans and their current views on the (mostly) white medical establishment of today.
I worked for almost a decade in public health at the local City Health Department, and when we would offer medical screenings, some folks would participate but there were times when our services were not as well attended as we had hoped, and frankly, after reading this book and learning this history, I fully comprehend any hesitation to do so. I, too, would be careful with any of my interactions with health care workers as well if I had grown up knowing this history of continued racial and medical discrimination against my friends and family.
And this book carefully covers decades and decades of continued abuse of the African American population. It wasn’t just in the “olden days” – it continued up until close to the end of the 20th century, and actually, probably continues in some places to this day if you consider who continues to populate medical studies offering “free health care if you’ll help us with our studies”. (It’s usually the highly disenfranchised, socially and economically disadvantaged people with few options for health care. Don’t even get me started on the availability and access to effective dental care….)
The Tuskagee study is usually the most famous study that characterizes this trend, and due to the whistle blower who let the cat out of the bag on that*, there is now an Office for Human Research Protections (OHRP) and federal laws and regulations requiring Institutional Review Boards (or IRBs) that are meant to protect human subjects in studies. (The OHRP is under the U. S. Department of Health and Human Services now.)
So – as you can probably surmise, this was a powerful read for me and it just underscores how tough and amazing the African American population are: these guys survived slavery, medical discrimination, civil rights injustices and more. Just imagine how different life for African Americans could have been without this century’s continued discrimination in almost every aspect of life. Goodness me. I’d also be very very careful when dealing with the medical establishment (or the white establishment in general) if I’d grown up learning this history and yet still continuing to thrive despite the odds.
There is nothing that I can say to make this right, so my advice would be to read this, let it in sink in, and then look at your own communities to see how you can impact them in a positive way somehow. I’m not sure that I really like the direction of this country’s administration right now (understatement of the year), but how to change that? (1) Vote. (2) Make your part of the world more just, kind, and fair in any way that you can.
This was an amazing and thought-provoking read. I hope it is for you as well.
* Someone had to whistle-blow on this study??…