Tuskegee University, which is linked to one of the most notorious medical experiments in U.S. history, wants to build trust between researchers and Black volunteers necessary for trials of COVID-19 vaccines.
Efforts to recruit Black volunteers for COVID-19 vaccine trials have stumbled this fall, despite high rates of hospitalizations and death in the African American community. Experts from Tuskegee University hope to change that by encouraging drug companies and researchers to adopt practices to protect vulnerable study participants.
Recently, four experts from Tuskegee and Harvard Universities wrote an article in the New England Journal of Medicine urging researchers to convince Black volunteers they can be trusted.
Black people account for 21 percent of the deaths from coronavirus but only 3 percent of vaccine volunteers. David Hodge, associate director of education at Tuskegee University’s National Center for Bioethics in Health Care and Research, said the lack of minority participation undermines trial results.
“Black participation should be around 13 to 14 percent,” Hodge said. “Because of historical distrust of medical research, Blacks have not been participating at that level. And that is not good for anybody.”
Because COVID-19 has been so devastating for Black communities, leaders made extra efforts to recruit minority study participants. Presidents of two historically Black universities in New Orleans, Dillard and Xavier, announced their participation in vaccine trials and urged students to do the same. Hundreds of parents and former students objected on Facebook, citing the history of unethical experimentation on Black subjects.
“Our children are not lab rats for drug companies,” one parent wrote on Xavier University’s Facebook page. “I can’t believe Xavier is participating in this. This is very disturbing given the history of drug trials in the black and brown communities.”
One of the most notorious studies took place at Tuskegee University. Researchers withheld the cure for syphilis from Black people in Macon County suffering from the illness. Many became disabled and died as a result.
The Center for Bioethics emerged in the aftermath to help improve conditions for minority research participants. Hodge said researchers should ensure volunteers will receive adequate medical care if they are injured by an experimental vaccine and that drug companies will make the final product available to hard-hit communities. Too often, efforts to improve Black participation in research studies relies on encouraging minorities to step up instead of researchers, Hodge said.
“Our emphasis is not to put the onus on the Black people to fix this situation,” Hodge said. “We are trying to push those in power to be more trustworthy, and that takes time. That can’t be microwaved. It has to be slow-cooked.”
However, time is running out for COVID-19. The first doses of vaccines will be available for high-risk groups in December. They could become more widely available by the Spring. But distrust remains high in the Black community, fed in part by a belief that politics undermined the safety of vaccines that became one of President Donald Trump’s central campaign promises.
News of positive results from Moderna and Pfizer have created hope, but also difficult questions around equity and access. If limited doses are available, some believe they should go to areas hard hit by the virus. But Hodge said some minorities might be suspicious if vaccines get rolled out first in Black communities.
But the sooner drug companies can build trust in the vaccine and make it available in minority communities, the more lives will be saved, he said.
“We have to be extremely cautious here,” Hodge said. “If we wait too long, we may have another six months of data and another 100,000 deaths. That’s the problem. We know that bad has been done, but on this one, we do not have the time to play with this.”