The Life, Death, and Dream of a Research Diversity Crusader

March 20, 2019 Off By EveAim

On January 20, 2015, President Barack Obama took the opportunity of his State of the Union speech to announce a bold research project. Called the Precision Medicine Initiative, he said, it would harness the power of big data and DNA to the benefit of all.

“We want to have a nation in which the accidents and circumstances of our birth aren’t determining our fate,” he told a room of reporters a few days later. “And if we’re born with a particular disease or a particular genetic makeup that makes us more vulnerable to something; that that’s not our destiny, that’s not our fate—that we can remake it.”

They were the words Shakir Cannon had been waiting his whole life to hear. For 32 years he had been living with a genetic disorder, sickle cell disease, which predominantly affects African Americans. He managed it the same way people had been doing for decades: He got monthly blood transfusions and took medications for the crippling bouts of pain in his bones and joints. He didn’t have the money for a bone marrow transplant. But he dreamed that one day there’d be an affordable, universal cure—and he was a vocal advocate for research to make that a reality. The billion-dollar, 10-year Precision Medicine Initiative, with its promise to sequence and study the health of 1 million Americans, answered that call.

A few years before, Cannon had started traveling to the capital, joining Baltimore-based activists Michael and Dominique Friend to talk to representatives about the disease. So when Michael extended an invitation to a White House briefing about the new Precision Medicine Initiative in September 2015, Cannon didn’t hesitate. He left from work as an IT engineer for the New York State Department of Health and drove the six hours from Albany to Washington, DC, through the night, arriving at 1600 Pennsylvania tired but full of hope.

Cannon and Friend joined other activists, researchers, and health care executives for a day of learning about the study. They even had the opportunity to provide feedback on how to accomplish its goals, including diversity of its participants. Despite making up 13 percent of the US population, people of African ancestry account for less than 3 percent of participants in human genomics studies. Rectifying that imbalance in such a large project could help make sure that all Americans can benefit from personalized medicine.

The two left the White House inspired—and by November, Cannon and Friend had cofounded a nonprofit in service of the upcoming study. They called it the Minority Coalition for Precision Medicine. It would aim to gather minority scientists and doctors together to educate underrepresented communities about genomics and the government’s study. And to get the good word out in African American circles, they knew there was only one place to go: church.

Every week, more than half of the nation’s 30 million African Americans attend church services. “It’s where we come together to pray and socialize, but also to get information from people we trust,” says Friend. “Black physicians, nurses, counselors, scientists, individuals with sickle cell—you can find them all in a church.” So he and Cannon also formed something called the Health Ministry Network, a coalition of national faith-based leaders who could distribute information through large swaths of the African American community. They shared their vision with NIH staff at a meeting the pair hosted in Baltimore and at a White House planning summit the following February.

The initiative took longer to get started than planned; America’s first black president had already left office when it launched. But on Sunday, May 6, it finally did, albeit under a new name: “All of Us.” Run by the National Institutes of Health, it retained a chief goal of ensuring that 70 to 75 percent of its participants come from historically underrepresented communities—including racial and sexual minorities, rural populations, and the socioeconomically disadvantaged.

Speaking at a launch event, NIH Director Francis Collins put it this way: “We have some big holes in our current understanding of health disparities. We can and we will do better, thanks to All of Us.” He made that promise from the marble pulpit of the famed Abyssinian Baptist Church in Harlem, New York, one of NIH’s outreach partners for the project. It was founded in 1808 by a small group of African Americans who refused to worship in churches where whites and blacks were segregated. “If All of Us can make it here, we can make it anywhere,” Collins said.

Friend and Cannon had created the Minority Coalition for Precision Medicine and the Health Ministry Network in the hope that the NIH would make faith-based organizations like Abyssinian a cornerstone of the All of Us national outreach strategy. And at one time it seemed like they had the influence to make that happen. But turning their ideas into action was far more complicated than they could have imagined.

Building the biggest ever public health project—following a million people over a decade—was always going to be a massive undertaking. Designing it with diversity at the core added new layers of difficulty, in part because it had never been done before. It challenged everything the federal health institute knew about conducting research.

To participate in All of US, NIH had to convince people to hand over their confidential health records, not to mention dozens of vials of blood and urine. And they had to do it in communities where the psychological scars of the Tuskegee syphilis experiments and the mistreatment of Henrietta Lacks’ family are still fresh. So they decided to partner with organizations who could bridge the trust gap. To work with these organizations, which didn’t have experience with federal research grants or contracts, they used an innovative funding mechanism called Other Transaction Authority.

It was a new way of doing things, and it took a while. Initially, leaders at NIH had hoped to launch All of Us before Obama left office, but the planning dragged on much longer than expected. It wasn’t until January 2017, months after the election of Donald Trump, that the NIH put out its first call for funding proposals.

By then Cannon and Friend had spent the better part of two years assembling a consortium of national faith leaders with ties to the National Baptist Convention and the Congress of National Black Churches. They’d brought those leaders to DC to participate in listening workshops and planning meetings at NIH throughout 2016. They estimated they had about 10 million people in their loosely arranged network; to tie it all together they were just waiting for NIH to figure out how much money was going to be made available, and when.

Rev. Arnold Howard

But even though the OTAs were designed to make it easier for NIH to work with groups like the Minority Coalition, they weren’t easy to get. Competition was fierce—only four organizations out of dozens got funded in that first round. Cannon and Friend were surprised when their proposal for a church-based education and awareness campaign was passed over. They were even more surprised to hear from some pastors inside their network that they had been contacted directly by the NIH about working with the African American community. “That made people uncomfortable,” said Cannon, in an interview with WIRED earlier this year. “It felt like the NIH was trying to use our ideas without giving us a real seat at the table.”

Interviews with former NIH staffers familiar with the situation suggest the All of Us outreach team was skeptical Cannon and Friend could make good on their promise of delivering recruitment messaging to a national network of churches. Their unfamiliarity with how a federal entity like NIH functioned sometimes caused friction. And the newness of their organizations and lack of name recognition were also a concern.

“Nothing of this magnitude had ever been done before,” says Arnold Howard, a pastor at Eno Baptist Church in Baltimore whom Friend tapped early on to grow the Health Ministry Network’s reach across all the independent denominations. He serves a community that is 97 percent black and has a life expectancy 13 years shorter than the average American. Howard says they knew they weren’t the only group vying for funds, and that no explicit promises had ever been made. Still, when NIH kept encouraging them to formalize their outreach curriculum and assuring them that funding opportunities would open up down the line, it was hard not to feel led on. “You see this same methodology for working with minority communities often, where in the beginning there’s lots of soliciting input and raising people’s hopes and expectations,” Howard says. “But in the end you’re left out, again.”

A spokesperson for All of Us sent a statement that said NIH does not comment on unfunded applications as a matter of policy. “We encourage everyone to apply for our funding opportunities,” the statement continued. “We anticipate the number of our partners will continue to grow, but we are very proud of what we’ve been able to achieve in term of the diversity of our community partners and our participants.”

Former NIH staffers said that interactions with Cannon and Friend’s organizations did help the All of Us outreach team see the power of faith-based communities to reach African Americans. NIH wound up granting a five-year, $46.5 million award to Columbia University Medical Center and Weill Cornell Medicine to enroll participants in All of Us; one of its recruitment partners was Abyssinian Baptist Church in Harlem. Then, in November 2017, NIH awarded another round of funding for a combined $1 million to 14 engagement partners, including the National Baptist Convention, which used the money to train 190 health ambassadors to conduct outreach with its 7.5 million members.

Dara Richardson-Hudson, chief engagement officer for All of Us

To live up to its mandate of inclusion, the NIH also made a number of structural changes to the study’s design. Instead of enrolling participants at a few big academic medical research centers—a practice that has created financial and geographic barriers for low-income and minority communities—All of Us partnered with six Federally Qualified Health Centers to recruit families with annual incomes below the poverty line.

“We see this as not only a scientific necessity, but also a moral and social justice imperative,” says Dara Richardson-Hudson, chief engagement officer for All of Us as of February 2017. The program also teamed up with pharmacies and blood banks to allow volunteers to sign up there; a move that could eventually make thousands of locations around the country available for recruitment.

So far those methods have produced decent results. Of the 30,000 participants who have completed the full study protocol, about 6,000 report being of African American ancestry. That’s only 20 percent of the national cohort, but it is higher than national demographics. (African Americans represent about 13 percent of US population.) In New York City, the numbers are higher—23 percent of fully enrolled participants identify as black. Richardson-Heron told WIRED that as of May 21, almost three-quarters of the people who’ve gone through the full protocol fall into at least one underrepresented category. “We are proud of our engagement efforts to date and will continue this work through the duration of our program,” she says. “We’ll be expanding our network and refining our strategies as we learn from the diverse communities we serve.”

On Sunday May 6, Friend went to church in Baltimore. Later that afternoon he pulled up a link to the All of Us livestream from Abyssinian in Harlem. He watched Richardson-Heron and Collins speak from the podium, followed later by a video the NIH produced about the importance of diversity in research. He was surprised when his own face appeared; he’d given the interview more than a year before at one of the early planning meetings. It wasn’t how he expected to participate in the All of Us national launch. But then again, he never expected to witness the rollout of the world’s biggest precision medicine project without Cannon by his side.

Throughout the fall, the pair had been trying unsuccessfully to reopen a conversation with NIH. Those efforts faltered further when Cannon suddenly fell ill with a fever and a cough. A fit 34-year-old, he should have been able to fight it off, but sickle cell disease can make it harder for the body to clear infections. On December 4, Cannon went into the emergency room. A day later he was dead, leaving behind his wife, Chau Duong, and their young daughter, Kira Faith.

Driving to his funeral later that week, Friend looked out the passenger window at the icy Hudson River that Cannon had sped past in the dark on so many trips back and forth to Washington, and he felt, for the first time, the true weight of his partner’s convictions. He imagined them keeping Cannon’s eyelids open and his grip on the wheel strong even after the caffeine faded from his bloodstream. That’s why even as Friend and the other members of the Health Ministry Network and the Minority Coalition for Precision Medicine remain hopeful that they can one day become official NIH partners, they’re also looking beyond All of Us for ways to ensure the next era of biomedical discovery will have roots in their communities.

“We’re pressing on in his memory,” says Tshaka Cunningham, a molecular biologist who serves as a scientific adviser to the Minority Coalition. He first met Cannon and Friend when he was working as a program manager at the US Department of Veterans Affairs and a liaison to the White House Office of Science Policy. In a room of 300 people, it was easy to find each other; they were the only black men. Now, Cunningham, who is a deacon at the Alfred Street Baptist Church in Alexandria, Virginia, spends his free weekends traveling to churches up and down the eastern seaboard, speaking to congregations about the opportunities on the horizon—from personalized cancer treatments to Crispr-based gene therapy trials for sickle cell.

“It’s not just about one study, we need to increase the overall genomic IQ for all communities,” Cunningham says. “Because the ubiquity of sequencing information is coming. And once we get to that inflection point, how do you deal with that information? How do you talk to your doctor about it? How do you secure it? How do you not be afraid of it? These are the questions we’re preparing our people to be able to answer for themselves when the time comes.” All of Us is the biggest bet yet on precision medicine, but it’s just the beginning.

The Life, Death, and Dream of a Research Diversity Crusader

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