Nobody Mentioned Tuskegee

We asked eight Black community members to tell us the truth about their health. What they said should change how clinical research talks to us.

I have spent eighteen years working on clinical trial engagement in Black and Brown communities. In that time I have sat through more presentations about community mistrust than I can count, and almost every one of them opens the same way. A slide about Tuskegee. Sometimes Henrietta Lacks. A somber acknowledgment of history. Then a plan for how to overcome it.

This summer we ran a storytelling contest with the Black Farmers Market. We asked people to write about their family health journey. We did not ask about clinical trials. We did not ask about trust. We did not put a single word in anyone’s mouth. Just an open prompt and a community that already trusts the people asking.

Eight people wrote back. Between them, roughly 3,700 words about illness, caregiving, food, faith, grief, doctors, hospitals and what they wish had been different.

Tuskegee was not mentioned once.

Neither was Henrietta Lacks. Not one reference, in eight unprompted accounts of health and the medical system, to the history our entire industry has organized its trust strategy around.

I want to be careful here, because there is a bad version of this finding and a good one. The bad version is “Black people are over it, stop apologizing.” That is not what happened and it is not what I am saying. What is in these stories is not the absence of racial harm in medicine. It is everywhere in these stories. It is just not where we have been looking for it.

What people wrote about instead

One woman was carrying identical twins. She developed a life-threatening complication, and because the surgery she needed was not being performed here yet, she and her husband drove themselves to Baltimore to get it. At twenty-five weeks, back in North Carolina, an infection meant the babies had to come immediately.

The contractions became unbearable. She cried, screamed, and begged for help. She was dismissed. She later learned her physician had told a nurse over the radio: “She’s being dramatic. I literally just left her room, and she was fine.”

A nurse trusted what she could see instead of what she had been told. That nurse is part of the reason this story has the ending it has. When the doctor came back, she was fully dilated.

Then, describing the care she received afterward, she wrote this sentence:

“I needed reassurance and compassion, but I frequently left appointments feeling more like a test subject than a patient.”

Read that phrase again. Test subject. That is the exact language our industry spends millions of dollars trying to defuse, and she is not using it about a clinical trial. She was never in one. She is using it to describe standard obstetric appointments with a physician who was training to perform a procedure.

At her six-week postpartum visit, after everything her body had been through, the doctor spent more time asking to see pictures of her twins than examining her. He decided she did not need a pelvic exam because she “looked fine.” She left, in her words, “feeling invisible.”

Another writer, our eldest at seventy-five and up, gave us the historical layer, and notice that it is family history rather than textbook history. Her grandmother’s goiter burst. The whites-only hospital in her hometown refused to treat her and sent her to the segregated Black hospital instead. She died. Her children and her widowed husband took that and became more determined to care for themselves.

The question we have been answering is not the question being asked

Put those together and the picture is clear. The trust barrier in these stories is real, it is racial, and it is almost entirely present-tense.

Our industry has been preparing an answer to: will you experiment on me, given what happened in 1932?

The community is asking: will you believe me when I tell you something is wrong?

Those are not the same question. And here is why the difference matters practically rather than philosophically: only one of them can be addressed with an acknowledgment.

You cannot apologize your way out of the second question. You can only build your way out of it. Which is, honestly, better news than it sounds. Because the second question has operational answers that a sponsor or a research site can actually commit to, put in a protocol, and be held to:

A named human being who responds when a participant reports a symptom. A documented escalation path when someone says something is wrong, so that “she’s being dramatic” cannot be the end of the conversation. Staff who look like the people they are enrolling. A real mechanism for a participant to report having been dismissed, and evidence that reporting it changes something.

None of that is a sentiment. All of it is auditable. And every bit of it speaks to the fear that is actually in the room.

I would go further. Opening a recruitment conversation with historical acknowledgment may be actively counterproductive, because you are introducing a frame that was not otherwise active, and you are doing it in a way that locates the harm safely in the past. The woman who was told she was being dramatic does not need to be reminded that something happened to Black patients ninety years ago. She needs to know it will not happen to her at her next appointment.

What else eight people taught us

The trust finding is the one that will get quoted, but it is not the only thing in these stories worth sitting with.

The gap in our families was information, not effort. Four of the eight writers said some version of this, and one of them said it perfectly. Writing about her mother’s cooking in the 1970s, all the lard and the rice, she wrote: “If she knew better, I bet she’d do better.”

She is not blaming her mother. She is defending her.

Understand what that means for anyone bringing health messaging into our communities. If your message rests on the premise that we made poor choices, you are insulting somebody’s mother, and you have lost the room before you finish your first sentence. The true story, the one our own community is telling, is that the information was withheld. That is a completely different message and it is the accurate one.

Nobody is giving up the food. Five writers built their stories around it. Mac and cheese, pot roast, fried chicken, collard greens, a grandmother’s chocolate pound cake nobody has managed to replicate. Deer, rabbit, duck and turtle at the holidays. Not one of them gave any of it up.

What they changed was the method. One writer: “I don’t have to cook collard greens cabbage and kale all day like my ancestor. Instead of using salt. I use it minimally and have introduced new and other seasonings like smoked paprika cumin and coriander.”

That is not abandonment. That is a woman honoring her ancestor and adjusting the technique. Every nutrition program that has come into our communities asking us to stop eating our food has failed, and this is exactly why. The answer was never substitution. It was always: cook what you already cook, differently.

People are counting pills, not lab values. One writer takes four pills a day and has twelve to eighteen lab appointments a year, and hopes the farmers market keeps her “away from the pharmacy and the clinic.” Another started this year on five medications and ended it on none, and the detail she was proudest of was: “Don’t even have to use the sleep machine!”

The aspirational identity here is fewer pills, fewer appointments, less dependence. Now consider what a lot of trial recruitment offers people: one more medication. That is not a reason to give up on the conversation. It is a reason to have it in the participant’s own currency. Tell people what it does to the load they are already carrying.

And the best retention evidence I have ever seen came from 1997. One of our writers joined a nutrition study almost three decades ago to learn to cut her salt. She brought it up unprompted, this year, in a farmers market essay contest, and ended the sentence with “Yay me!” She still lives by what it taught her.

She did not mention the science. She did not mention the compensation. She did not mention contributing to research. What she remembered was a skill she got to keep.

Everyone in this field is chasing retention. That sentence is the answer. Give people something about their own body that stays with them after the study closes.

Why the method matters as much as the findings

I want to be honest about the limits here, because I would rather you trust the next thing we publish than oversell this one.

This is eight people. Seven women and one man. All in the North Carolina Triangle, mostly suburban, all people who chose to write several hundred words about their own health, which means they are more health-engaged than the population we most need to reach. These are strongly grounded hypotheses about values and language. They are not population estimates and I will not present them as such.

But look at what eight people produced.

A single unprompted account of a woman being told she was “being dramatic” while fully dilated explains Black enrollment barriers to a leadership team more powerfully than any statistic I could put on a slide. It cost a fraction of a focus group. And it surfaced a finding that no message-testing exercise could have produced, because message testing can only tell you how people react to language we already wrote.

That is the whole argument for crowdsourcing, and this is what it looks like in practice. Conventional research asks the community to respond to the industry’s framing. Crowdsourcing lets the community speak first and builds the framing afterward out of what they actually said. You find out what you did not know to ask about. We went in expecting to write about historical mistrust. The community told us we were looking at the wrong century.

There is one more thing in these stories that I keep returning to. Our eldest writer, after describing her grandmother dying because a hospital would not treat her, and her grandfather having to use a white intermediary to buy the land his family still owns, wrote this:

“Resiliency is in our blood, and that is a good thing which doesn’t need to change.”

So much health communication aimed at Black families reads like an inventory of everything wrong with us. Risk factors, disparities, deficits, gaps. She is telling you there is also something right in the inheritance, and it is the thing that got her family here.

End what harms. Keep what carries you.

That is not my line. It is hers, and seven other people’s, and they gave it to us for free because somebody finally asked.

The full findings from all eight submissions are published in our latest community intelligence report. Curated Clinical uses crowdsourcing contests to generate bottom-up community intelligence for pharmaceutical, biotech and clinical research organizations, improving trial enrollment, retention and health equity outcomes. To be part of the next challenge, join us at curatedclinical.com.

All quotations are verbatim from contest submissions, shared with participant permission. Our thanks to the Black Farmers Market, and to the eight people who wrote.