I don’t remember how I learned about the Tuskegee Study. It was just always there. Maybe I picked up on rides in the pickup truck with my great uncle down dirt roads to see his doctor. Maybe my dad, then the fledgling historian, taught it to me in a library somewhere between drafts of his dissertation. Maybe it was barbershops or through clandestine cigarette-smoking with street guys on the way home from junior high; who knows? Like my innate discomfort around police and my knowledge of “how to act” in mixed company, the Tuskegee Study and an anxiety about a malevolent medical system became part of my language for navigating and understanding the world from the earliest, and I didn’t really have a choice in the matter.
As a black man from the South, that anxiety—a wariness built on an embedded knowledge of hundreds of poor black Alabaman men who were exploited and led to their deaths by an unethical government-sanctioned project—shapes my current beliefs about medicine and my own health more than I care to admit. I still have trouble trusting physicians and have declined participation in some health studies that probably would have been useful for me. That’s even after studying the study in college as an undergraduate public health minor. That’s even after working at Morehouse College as a research assistant to Dr. Bill Jenkins, one of the CDC whistleblowers that called attention to the Tuskegee Study and later the manager of the Participants Health Benefits Program for Tuskegee survivors. My wariness still comes after years of research in trying to quantify that same wariness in older black men and trying to figure out ways to get them to overcome their own suspicions.
That history is the reason why I was thrilled to speak to two researchers who have finally been able to quantify the effects of the Tuskegee Study on medical mistrust in black men and real health outcomes for older black men between 1972 and 1980. Researchers Marcella Alsan and Marianne Wanamaker became interested in the question through similar research as my own. As Alsan told me, the issue would often come up among her black patients and some physicians in explaining the reticence of those patients.
This research is a coup for those who have done that kind of work; canvassing dirt roads, churches, barbershops, and street corners in Black America to understand the exact nature of the wound left by that the Tuskegee Study, which was run for 40 years and finally abandoned only in 1972. The work still is necessary work, and when I canvassed those roads, the immensity of it felt a bit like trying to assess the fallout from a bomb.
Like me, several other black men that I interviewed throughout the rural South were either inculcated from birth or from experience living in 1972 with the idea that the American health-care system is not for them. Young boys and old men felt it alike, and even if the Tuskegee Study was not known by name, it was a definite part of a vivid shared cultural memory. References to injection of “bad blood,” government research, or conspiracies about HIV were clearly influenced by details of Tuskegee, even if the details weren’t always quite right.
After the discussion with Alsan and Wanamaker and the article I wrote based on it, I did a little more canvassing on Twitter to get a sense of how other black people responded to the new information. The responses highlighted just how important the work is:
I'm a black clinical researcher at Duke, and its tough getting older black participants.You have to be patient. https://t.co/U1ULX9tTrV— bryana. (@BreeDevil14) June 17, 2016
I grew up in Alabama. My grandfathers NEVER trusted doctors. Never went. Extended to most males in my family. https://t.co/Yn0Jv9rUXk— Um Retigo (@BamaSlymm) June 17, 2016
So having grown up with that knowledge and a family that’s particularly prone to a lot of diseases common among AAs there (cont) @fivefifths— Ryan. (@writelikeryan) June 17, 2016
As I got older, those feelings were compounded by being black and gay and “high risk” for HIV/AIDS. @fivefifths— Ryan. (@writelikeryan) June 17, 2016
Being positive, anytime I see hear "new treatment" or "test studies" calling for "black msm" I'm skeptical. https://t.co/dcfuQ0r1gk— George M Johnson (@IamGMJohnson) June 17, 2016
The last few tweets show the special relevance of the study today. After the early days of the HIV epidemic, gay black men and men who have sex with men are likely to be wary of medical exploitation in a way that is similar to the original response to the Tuskegee Study.
Still, though it was a cultural memory that shaped the lives of all the black men I know, the idea that the Tuskegee Study has had an actual impact on health has been mostly based on anecdotal evidence. That has made it difficult to talk about how it may have impacted health disparities between black and white people and how to address that problem. People generally view medicine as a scientific and unbiased field bound by certain ethics—that may or may not be true now—but that view has made the concerns of conspiracies seem quaint and backwards. Accordingly, the Tuskegee Study has faded from many memories or has been relegated to historical commentary.
Although it would be better if doctors and medical researchers took stories from the real-life experiences of black people a bit more seriously, it’s always nice to be able to point to something like Alsan and Wanamaker’s work that can help substantiate anecdotes. The same goes for things like my mistrust of police or insecurities about workplace racial perceptions. Not only does their work quantify some mortality differences attributable to Tuskegee, it illustrates how embedded anxieties like my own became embedded through migration and informal exchanges of information. Their paper is both analytical and historical.
Alsan and Wanamaker’s working paper enriches the stories of several older black men that I knew, and how their mistrust in doctors was both a defensible position and was implicated in obvious health issues—many of them died before their 70s. Their research validates the anecdotes I’d compiled along those roads in southern towns and barbershops years ago. It’s also something I can show my father and grandfathers as I scold them into going in for checkups. But it also means a little for me personally. For me, their working paper also provided a window into how the trauma I’ve always known as history may have shaped my own present.