‘Guinea pig for white people’: Black Americans react to being asked to take part in coronavirus vaccine trial

Only 3 per cent of people who have signed up to trial nationally are black

Black US citizens would rather risk catching the virus than volunteering to be ‘injected’ by officials (AFP via Getty Images)

The recruiters strode to the front of the room, wearing neon-yellow vests and resolute expressions. But to the handful of tenants overwhelmed by unemployment and gang violence in Northview Heights, the pitch verged on the ludicrous.

Would you like to volunteer for a clinical trial to test a coronavirus vaccine?

On this swampy-hot afternoon, the temperature of the room was wintry. “I won’t be used as a guinea pig for white people,” one tenant in the predominantly black public housing complex declared. Another said she knew of five people who had died from the flu shot. Make Trump look good? a man scoffed — forget it. It’s safer to keep washing your hands, stay away from people and drink orange juice, a woman insisted, until the devil’s coronavirus work passed over.

Then an older woman turned the question back on Carla Arnold, a recruiter from a local outreach group, who is well-known to people in the Heights:

“Miss Carla, would you feel comfortable allowing them to inject you?”

Ms Arnold adjusted her seat to face them down, her eyes no-nonsense above a medical mask.

“They already did,” she replied.

The room stilled.

Recruiting black volunteers for vaccine trials during a period of severe mistrust of the federal government and heightened awareness of racial injustice is a formidable task. So far, only about 3 per cent of the people who have signed up nationally are black.

Yet never has their inclusion in a medical study been more urgent. The economic and health effects of the coronavirus are falling disproportionately hard on communities of colour. It is essential, public health experts say, that research reflect diverse participation not only as a matter of social justice and sound practice but, when the vaccine becomes available, to help persuade black, Latino and Native American people to actually get it. (The participation of Asian people is close to their share of the population.)

People of colour face greater exposure to the virus, in part because many work in front line and essential jobs, and have high rates of diabetes, obesity and hypertension, all of which are risk factors for severe Covid-19. But even when those factors are accounted for, people of colour still appear to have a higher risk of infection, for reasons researchers cannot yet pinpoint, said Dr Nelson L Michael, an infectious-disease expert at the Walter Reed Army Institute of Research.

52%

of white respondents said they were likely to take a coronavirus vaccine, according to a Pew Research Group poll last month

“Historically, we test everything in white men,” said Dr Michael, a member of the vaccine development team at Operation Warp Speed, the public-private partnership set up by the White House. “But the disease is coming after people of colour and we need to encourage them to volunteer because they have the highest burden of disease.”

Now, academic researchers at trial sites like Pittsburgh’s are turning to neighbourhood leaders to attract more diverse pools of participants. The Urban League of Greater Pittsburgh sponsored an information webinar and the New Pittsburgh Courier, which has a large, African American readership, published articles about the trial.

And in the Hill District, which contains the city’s oldest black neighbourhoods, volunteers from the Neighbourhood Resilience Project, a faith-based initiative that offers a food bank, clothing and a health clinic, are trying to reach people where the pandemic is raging in crowded, multigenerational homes.

The recruiters knock on doors and buttonhole neighbours. Sitting on worn sofas in small, close apartments, they address fears with respect and facts.

Science vs Scientists

Black and Latino people, along with Native Americans, are being hit far harder by the coronavirus than white people are. A recent analysis by the Kaiser Family Foundation shows that from March through mid-July, people of colour were five times more likely to be hospitalised for Covid-19 than their white counterparts and that through 4 August, the rate of death among black people, relative to their share of the population, was at least twice as high. In Allegheny County, which includes Pittsburgh, the black population’s rates of cases and hospitalisations have been almost as stark.

While black people stand to benefit greatly from a coronavirus vaccine, surveys show that they are the group least likely to trust one. In a poll last month by the Pew Research Group, only 32 per cent of black respondents said they were likely to take it, compared with 52 per cent of white respondents. Historically, black people have been more hesitant than other groups to get vaccines, especially the flu shot, and are also far less likely to volunteer for medical research; one study showed their participation hovering at about 5 per cent. They are 13 per cent of the population.

32%

of black respondents said they were likely to take a vaccine in the same poll

The mistrust is built on present disparities as well as a long history of abuse. Studies show that black people in the United States have less access to good medical care than do white people and their concerns are more likely to be dismissed. Notorious medical experiments on black people continue to exacerbate suspicion. 

They include surgeries by Dr J Marion Sims, a 19th-century gynaecologist, on enslaved black women; the 40-year-long Tuskegee study, in which doctors deliberately allowed syphilis to progress in black Alabama sharecroppers, and researchers’ taking of cells without permission from Henrietta Lacks, an African American cancer patient, in 1951.

“It’s not the science we distrust; it’s the scientists,” said Jamil Bey, head of the UrbanKind Institute, a Pittsburgh nonprofit organisation whose programs include virtual town halls on racism, the pandemic and vaccine trials.

3%

of volunteers participating in vaccine trials are black

Some public health experts said that the percentages of volunteers from various groups should replicate the disproportionate effect of the virus but that they hope at least to mirror the population so that about a third of participants are black, Latino and Native American.

By mid-September, 407,000 people in the US had enrolled in the vaccine trials through the website for the national Covid-19 Prevention Network, but only 11 per cent identified as people of colour.

Trials for vaccines developed by the drug companies Moderna and AstraZeneca are being conducted at local sites across the country, including the University of Pittsburgh. In June, Dr Elizabeth Miller, a co-director of the community engagement programme for the university’s Clinical and Translational Science Institute, reached out to local groups to help with recruitment.

At early meetings, the Reverend Paul Abernathy, an Orthodox Christian priest and Iraq War veteran who is black, spoke up: the national strategy of radio commercials, online ads and church sermons was not enough to persuade people to enrol, he said. They needed to be pulled into conversation, one on one. And he had just the team to do so.

In 2011, Father Paul, as he is known locally, founded an organisation that he recently renamed the Neighbourhood Resilience Project. Run mostly by volunteers, it provides food, counselling, medical care and other services to the city’s poorest neighbourhoods. In April, in response to the pandemic tearing through those communities, his group trained volunteers to check on their neighbours. These “community health deputies” offered masks to young people hanging out on corners and picked up food and medicine for older people.

13%

of America’s population is black

“Why have the deputies not recruited for the vaccine trials?” suggested Father Paul, a Pittsburgh native whose ancestry is African American, Syrian and Italian-Polish. “People trust folks who look like them, who know them,” he explained.

Conversations

On a recent morning, Father Paul’s team climbed aboard a modest RV to fan out to some of Pittsburgh’s struggling neighbourhoods. “There is a great deal that is against us,” Father Paul said. “And we have to be honest about that. Our community needs more than what we have. But with a good spirit and a willing heart, miracles can happen.”

They rolled through the streets, carrying backpacks full of bottles of water, bags of Cheez-Its and cards with contact numbers. Father Paul rode shotgun, wearing his clerical collar and trademark fedora. As the RV paused at traffic lights, people waved at him. “How y’all doing?” he shouted back.

At one stop, LaRay Moton, a community health deputy, introduced Father Paul to her neighbours in the Bedford Dwellings, a public housing complex: Lori Strothers and her daughter Jayla.

Then they learned that the vaccine was the reason for the priest’s visit.

“It’s scary,” said the younger Strothers. “You’re being filled with unknown things. There’s not enough data.”

“So how much data would you need to feel comfortable?” Father Paul asked.

“I’m a visual person,” she explained. “I need to see it on paper.”

407,000

of Americans had enrolled in vaccine trials through the website for the national Covid-19 Prevention Network

He turned to his deputies. “Let’s work to get spreadsheets to her,” he said.

One more trauma

To Paul Abernathy, Covid-19 is one more deadly trauma in a litany that has shaken black neighbourhoods. People come to his organisation seeking food, healthcare and clothes and wind up talking about stabbings, overdoses, robberies, fires, domestic violence.

“I was seeing more PTSD in my community than I saw in Iraq,” he said, referring to his yearlong tour of duty as a staff sergeant in 2003, during which he saw combat.

Upon his return, he became an outspoken opponent of the Iraq War and completed masters degrees in divinity and in public and international affairs. About six years ago, Mr Abernathy began working with researchers from Duquesne University and the University of Pittsburgh to develop a manual for community development, informed by the sustained, incapacitating trauma so prevalent in the neighbourhoods his group serves. Now, often summoned by the Pittsburgh police, Father Paul’s volunteers arrive after a shooting or a stabbing to administer emotional first aid.

The weight of so many traumas on a community, he said, is in part what makes it so hard to ask for volunteers for the trials. Daily survival can feel so all-consuming that participating in an institutional research experiment seems utterly beside the point.

“We cannot talk about a vaccine without acknowledging these other epidemics,” Mr Abernathy said. “Our kids aren’t being educated, and food lines are longer. Hope is gone, too. So if you say to people: ‘That makes volunteering for the vaccine trials more meaningful’, they will say: ‘Are you kidding me? My house got shot at last night. And you really want to talk about Covid?’”

11%

of volunteers in trials identify as people of colour

Progress

By the following week, there were signs that the outreach efforts were helping. The portion of people of color in the Pittsburgh area in the vaccine registry had risen to 8 per cent, from 3 per cent. Because trial leaders can choose whom they finally enrol, they have been increasing the percentage of nonwhite subjects. Moderna reported that nationwide, as of 28 September, 26 per cent of those enrolled were black.

Dr Miller, the University of Pittsburgh professor who coordinates outreach for the local vaccine trials, was elated. “The community health deputies have been instrumental in communicating about the vaccine registry in authentic ways,” she said.

During the week, the recruiters had confronted an array of questions.

Won’t melanin protect me from Covid?

If you had Covid, can you go in the trial?

How do you know that white folks won’t get one vaccine and black folks another?

How do you know what they’re putting in the black vaccine?

At a weekly meeting over Zoom, the health deputies and the researchers reviewed a new script to help answer those questions.

Then Tyra Townsend, who trains volunteers, asked Ms Arnold, the Northview Heights community health deputy, to speak about why she had decided to lead by example and get an injection.

Now, she said, how could she ask people in the community to volunteer for the coronavirus vaccine trials if she hadn’t done so herself?

“That’s why I joined this vaccine study,” Ms Arnold said. “So African Americans can have a seat at the table.”

New York Times