66 Time November 4, 2019
infected men were given no treatment at all—
even after penicillin was discovered to be an
effective syphilis therapy in the 1940s. They
were left to die; pass the disease on to partners
and children; or develop complications like
heart failure, mental instability and blindness.
When the Associated Press exposed the
study in 1972, public outcry was immediate.
Survivors and the families of deceased pa-
tients won roughly $10 million in a 1974 set-
tlement. Two decades later, in 1997, President
Bill Clinton apologized for Tuskegee, calling it
“deeply, profoundly, morally wrong.” But the
wound was deep, and it would scar. “African
Americans still do not believe the health care
profession will take care of them,” Shuck says.
That mistrust wasn’t built on Tuskegee
alone. In the 1800s, enslaved people were com-
monly drafted as unwilling, unanesthetized
subjects for medical experiments, and their de-
ceased bodies were frequently dissected. Even
after slavery was abolished, black patients were
often turned away by white doctors and hos-
pitals. When they did get treatment, it wasn’t
always ethical. Henrietta Lacks famously had
her fast- replicating, cancerous cervical tissue
taken without consent in 1951; the cells even-
tually became a lucrative cornerstone of medi-
cal research, kick-starting a decades-long de-
bate over informed consent and who profits
from scientific advancement. Such incidents,
and numerous others like them, still loom large,
especially in a world where many physicians,
according to one 2017 research review, implic-
itly favor white patients. “The whole medi-
cal system follows along with the racism that
the country was built upon,” says Dr. Vanessa
Grubbs, a nephrologist at the University of Cal-
ifornia, San Francisco.
Famous historical examples mix with fam-
ilies’ more contemporary, personal stories of
mistreatment, leaving many African Americans
skittish of doctors, says Dr. Damon Tweedy, an
associate professor of psychiatry at the Duke
University School of Medicine and the author
of Black Man in a White Coat. “There’s some
remnant of that that you internalize,” he says.
Though he’s black himself, Tweedy says pa-
tients have asked if his hospital is “experiment-
ing” on them or using them as “guinea pigs.”
It’s perhaps no surprise, then, that many
African Americans are hesitant to volunteer
for medical studies—often an important first
step in developing effective treatments. A
ProPublica analysis of Food and Drug Adminis-
tration data found that in many trials for drugs
approved from 2015 to 2018, less than 10%
of research participants were black. (The re-
search community is working to close such
gaps through initiatives like the National Insti-
tutes of Health’s All of Us trial, a million- person
study trying to recruit under-researched pop-
ulations.) As a result, doctors today know far
more about white bodies than about black bod-
ies, even though black Americans report higher
rates of conditions like Type 2 diabetes, heart
disease and many cancers—largely because of
centuries of structural inequities that have,
among other consequences, left more than 10%
of black Americans without health insurance
compared with about 6% of whites, and 21%
of black households without secure access to
quality food compared with less than 10% of
white households.
Understanding that complicated history
is crucial to understanding the state of organ
transplantation in the U.S. today. Black pa-
tients, on average, face longer waits for majorChelsea with his
daughter Ebony at
home in California in
February 2019, months
before his transplant
surgery