For 25 years, Douglass Petty has been preaching to his congregation at Fresh Start Bible Church in St. Louis, Missouri. He’s got warm, deep voice, and despite having a demanding schedule, gives people he’s speaking with his undivided attention. He’s a prominent figure among a group of clergy members who all work in St. Louis; together, they stand as pillars of the local African American community.
Petty has earned the trust of his peers and the people he serves. So when he decided to work with John Morris, a neurologist at Washington University in St. Louis, they took notice. Morris researches the causes and treatments of Alzheimer’s disease, and though St. Louis has a large African American population—about 46% of the city’s 303,000 residents are black—clinical research conducted at his Alzheimer’s Disease Research Center struggles to reflect the population’s demographics.
That’s why Morris reached out to local community leaders, including Petty, who now leads the ADRC’s African American advisory board. “You need to go where people are,” says Petty. Under Morris’ direction, the center has advertised their research studies within local churches, fraternities, sororities, and schools to try to increase African American representation in Alzheimer’s trials.
I spoke with Morris this week while attending the annual Alzheimer’s Association International Conference in Los Angeles, California, where thousands of his colleagues gathered to swap theories and research over panel discussions and posters. Most are trying to increase diversity in their research—not to simply pay lip service to social justice, but to increase the likelihood of finding a cure.
For decades, Alzheimer’s research has focused on the theory (paywall) that a protein called amyloid is the primary culprit behind the most common form of dementia. But clinical trials targeting the protein have consistently failed. Not only that, but Alzheimer’s affects people of varying ethnicities, sexual and gender identities, and employment and educational backgrounds differently—yet the overwhelming majority of clinical research in Alzheimer’s is on white, affluent participants. Even if researchers do find a treatment for Alzheimer’s disease, it may not work for everyone.
This disparity sets the field up for failure. It’s like being in a dark room with a single lamp, and studying only the part of the room that’s illuminated, says Jennifer Manly, a neuropsychologist at Columbia University. By excluding minorities from research, the scientific community is not only overlooking potential therapies, but failing to address social health disparities: Minorities have higher rates of dementia.
Knocking down walls
Everyone I spoke to at AAIC was aware of the field’s representation issue, and argued emphatically that it needed to be fixed. The research presented at the conference reflected that urgency: Work showing that sleep aids either raise or lower dementia risks in white or black populations, respectively, illuminates how biological differences could alter the way Alzheimer’s manifests. Research finding that LGBT individuals are more likely to report early signs of dementia suggests other mental and social factors may play a role in the disease’s pathology. And evidence that women who work outside the home may be more resilient against cognitive decline highlights the need to explore other protective factors. By studying a range of populations, scientists can see how dementia strikes unequally—and gain insight into possibly overlooked nuances of the disease.
But even this new spate of research was tough to get off the ground. While every researcher I spoke with at AAIC would welcome more volunteers from underrepresented populations, most clinical research remains socially and culturally inaccessible. There’s a reason that inclusivity has been underemphasized by the research community: “It’s more expensive and it’s more difficult,” says Francisco Moreno, a geneticist at the University of Arizona.
It’s easy for researchers to recruit a certain kind of participant: Slap up a flier near a university campus or medical center, and wait for the calls to roll in. But the people likely to see and respond to those calls are overwhelmingly white and English-speaking. And it’s the people with the financial stability to skip work—taking time out of their days to go to multiple doctors appointments and follow-ups—who are most likely to take part in long-term clinical trials or reseach.
To reach a broader community, researchers need to invest time and money. Andrea Gilmore-Bykovskyi, a nurse and researcher at the University of Wisconsin-Madison, is building a registry called the Aging and Brain Health Resource Center, which matches potential participants in the greater Madison metropolitan area with ongoing clinical Alzheimer’s studies. In addition to trial matching, though, this group asks participants about other areas of their lives—like housing, food security, and even internet speed. If people are missing some basic living needs, there’s no way they’ll be able to complete the follow-ups necessary for clinical trials. “We see if we can connect people to existing resources that may put them in a better social situation,” she says.
Changing English-language flyers is an easy fix, too. Printing information in Spanish in areas with a large Hispanic population is critical for participation, says Moreno, who is working to recruit a diverse set of volunteers for the US effort to sequence the genomes of one million Americans—work that could have implications for Alzheimer’s research. He also emphasized the importance of mobile units that can meet people closer to their homes, and extending hours into nights and weekends for those who cannot afford to take off work.
Those are the easier barriers to dismantle. The more deeply embedded problem is that many minority communities have good reason to distrust the medical field and its engagement efforts.
It’s no secret that the medical establishment has historically abused minority populations. The Tuskegee syphilis study—a federally-run experiment in which doctors lied to hundreds of black men living in Alabama and failed to provide them treatment for syphilis in the 1940s—is a modern hallmark of this abuse, but it extends back through centuries of enslavement.
The injustices continue. Some members of the Latinx community are less likely to seek out health care due concern about their undocumented immigration status. Members of the LGBTQ community may feel it’s not safe to disclose their sexual and gender identities. And there are many cultures that simply choose other forms of medicine over Western approaches.
Not every person within these communities share these opinions or experiences. But on the whole, medical research will not reflect the populations it serves until scientists can earn their trust.
There’s no shortcut to building those relationships, says Manly, and it takes humility to recognize that fact. Although many of these researchers are experts in their scientific fields, they are not experts in the communities that they’re trying to reach. “They have to accept that the partners that they need to have in this…are the community members that they’re trying to recruit. You’re not the expert anymore,” she says. “You’re the one who’s asking for help.”
For Morena, that means reaching out to promatoras, community leaders in the Latinx community, and being sensitive about asking questions about citizenship status. And for Morris, it meant slowly building relationships with his patients in the St. Louis area.
Before he became a liaison for WashU’s ADRC, Pastor Petty got to know Morris and the Alzheimer’s center while they took care of his mom, who had dementia. Petty saw the nearly two-decade track record of Morris’ efforts to work with the local African-American community. That made it an easy decision to participate in Morris’ research himself, and encourage his colleagues to do the same.
Part of Petty’s role, with the rest of the advisory board, is to point out where research needs to be more welcoming and accessible. They pointed out that Morris’ staff lacked diversity, and that the magazines in the waiting rooms were all targeted toward a white audience. The WashU staff, in turn, has expanded their recruiting nets and put out copies of Ebony in their waiting rooms, along with other magazines.
The advisory board has also specifically alerted Morris’ group to the community’s fears about some of the procedures involved in research. Morris’ group studies early-stage dementia, which is asymptomatic. They need samples of cerebrospinal fluid from participants, which is an invasive procedure for anyone. Some fear that it’s painful—though it shouldn’t be if done correctly. One of the initiatives Petty is working on with Morris is a demonstration of a spinal tap.
In recent years, some results have shown these efforts working. Last year, researchers based in Los Angeles showed it’s possible to help black men lower their blood pressure by working with their local barbers, who also hold community credibility. And just as Morris’ group has been able to work with a larger number of African American participants, Moreno says that the diversity of national genetics research has started to improve.
Continuing the process won’t be easy. The relationship between Morris and Petty alone has been 20 years in the making, and it’s still growing and evolving. Diverse recruitment for clinical trials at their center could still be better, Morris says. It will take more time and effort to build relationships with every group affected by Alzheimer’s—and every group will be different.