Dr. Ann Falsey, one of the principal investigators of the vaccine treatment and evaluation unit at the University of Rochester, sees a consistent problem in her research.
“We’ll get a thousand people who want to be part of vaccine studies,” Falsey said. “Ninety-nine percent of them will be white people who live in the suburbs.”
She clarified that 99% is not an exact statistic.
“But you see the point: The vast majority of people we hear from are this one demographic, and that’s not representative of the population,” she said.
Falsey and Dr. Angela Branche, the other principal investigator at the vaccine treatment and evaluation unit, said the COVID-19 pandemic makes recruiting a diverse set of volunteers for vaccine trials especially important.
Black and Hispanic Americans are more likely than white Americans to contract, be hospitalized with, and die from COVID-19, federal data shows. Yet, they’re much less likely than white Americans to be enrolled in trials of vaccines to prevent the disease, according to Branche.
“You really want to ensure that the vaccine and treatment is actually going to help the group that’s being most affected,” said Branche. “But that’s not what the medical field has always done.”
Researchers need to overcome a history of mistrust between minority communities -- especially Black communities -- and the medical establishment, said Dr. Linda Clark, a founder of the Black Physicians Network of Greater Rochester and a senior advisor at Common Ground Health.
“Any Black person with a little bit of awareness has some healthy skepticism of medical research institutions,” Clark said. “We have a deep, long history of doing unethical actions on black bodies.”
Clark pointed to the Tuskegee syphilis study, which ran from 1932 to 1972 and tracked the progression of syphilis in Black men who were never told of their diagnosis or offered treatment for the disease, and the case of Henrietta Lacks, an African-American woman whose cancer cells were harvested and used in medical research without her knowledge, as examples of medical institutions “abusing and exploiting black people and their bodies.”
Even if those unethical research practices have ended, minority communities continue to be left out of the medical establishment today, said Sebrone Johnson, a vice president at the Urban League of Rochester and a member of the community advisory board at URMC’s Center for Community Health and Prevention
“It’s difficult for communities to trust medical professionals when they look in their neighborhood and don’t find any urgent care facilities or primary care doctors,” Johnson said. “They see the disparities and the abandonment with their own eyes.”
The result, the researchers said, is that the people who need a vaccine most urgently are the least likely to get it -- unless they make changes. Johnson said the initial efforts show promise if they’re sustained.
The vaccine research lab at URMC is joining with community leaders, churches and advocacy organizations to reach people who are skeptical about participating in clinical trials.
Branche said they’re also adding enrollment sites in spots that are likely to see traffic from minority residents of the city, like bus stops, and developing advertisements that feature people of color. Clark said she is seeing some progress.
“We are finally seeing ads that appear with people that look more diverse than we’ve seen before,” Clark said. “We are seeing efforts at building trust in the community.”
But both she and Johnson said it’s not enough.
“I don’t think we’re doing well,” Johnson said. Then he took a long pause and said, “yet.”
“Maybe it’s because I have no other choice but to believe this, but I believe that trust will come around,” said Johnson. “Big ships turn slowly.”