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Stanford University School of Medicine

Mistrust of medicine in the wake of Tuskegee: A student’s reflection

Javarcia & Dr. Garrick As I stood in an Oakland barbershop recently, an elderly black lady likely no older than my own grandmother reproached me.

“Young man,” she said. “I asked you a question.” She wanted to see the documents I was giving to the participants in a Stanford research project led by Marcella Alsan, MD, PhD, about African-American trust in the medical community.

As I fumbled to politely tell her I couldn't provide her with the confidential documents, she impatiently raised her hand and stopped me.

“Never mind. If you’re going to be targeting and recruiting black men, you should have something more to give to the public. We can’t have another Tuskegee.”

Here we were, more than 40 years since the Tuskegee syphilis study was revealed to the public, and the mistrust it generated was still prevalent.

As a black Mississippian, even in elementary school, I knew about the Tuskegee syphilis experiment. I never saw the popular film "Miss Evers’ Boys", which focused on the syphilis experiments, but I was raised around older black men and women at home, in church and in my afterschool care, who readily shared their knowledge with me.

My grandparent also discussed high blood pressure, strokes and heart attacks — conditions that had affected their family and friends. I knew I was statistically more likely to suffer from heart disease, hypertension, diabetes, stroke and other chronic conditions than my Caucasian counterparts sitting next to me in the same class. That was common knowledge that I grew up with, as was the grim life expectancy gap between blacks and whites.

My paternal grandfather, great-uncle and uncle all died from cardiovascular illnesses before I met them. Each of them died well below the average life expectancy. This motivated me to pursue medicine as a physician or physician-scientist, to combat the prevalence of heart disease in black males as well as the general American population. I want to take steps to understand, and hopefully reduce, the life expectancy deficit for black men.

The woman in that Oakland barbershop this summer wasn't unique: The mistrust created by the medical community as a result of that 40-year study still has a lasting impact today. That conclusion was affirmed by the results of the project that had led me to those barbershops. The elderly lady’s bold comments were, unsurprisingly, reflective of popular research topics among health experts today such as mistrust, discrimination and barriers to care.

I have asked myself many times why my grandfather had always been reluctant to visit a physician despite his obesity, diabetes, and previous myocardial infarction. It never occurred to me that mistrust of an institution as critical as medicine that does not reflect or account for his own personal experiences as a black is part of the why. I thought that health care is a human right that anyone would readily seek out if possible. That was admittedly naïve of me; there are barriers to health care even when it’s available.

I am not suggesting that race inclusion and representation is a panacea for these problems; I am saying, however, that the trust inherent to them is a significant step in the right direction. I believe it is a larger part of the solution than we currently recognize.

If including people of color in medicine encourages medical trust, then my professional aspirations are a small step in the right direction. Either way, I still move forward knowing that pursuing my goals means someone is listening to the worries of that elderly lady and to the generation for whom Tuskegee still casts a shadow.

Javarcia Ivory is a Stanford sophomore and a research assistant for Marcella Alsan at Stanford Health Policy. A biology major, Ivory intends to become a physician-scientist focused on health among African-Americans.

Photo of Javarcia Ivory and Owen Garrick, MD, president of Bridge Clinical Research, by Nicole Feldman

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