The science journal Neuron published a paper in July on the underrepresentation of African Americans in brain research, specifically in genomic studies that inform the emerging field of personalized medicine.
One of the paper’s authors is Dr. Daniel Weinberger, director of the Lieber Institute for Brain Development, a nonprofit located on the Johns Hopkins medical campus.
“The paper is really a statement about how much communities of color have been missing from this dramatic new revolution in biomedicine,” he said.
Weinberger says personalized medicine is tailored specifically to a patient’s genomic background.
“These differences in genomic backgrounds might influence differences in disease susceptibility and resilience,” he said.
But the paper says that some of the nation’s largest genome-wide association studies on disorders like Alzheimer’s, autism and schizophrenia do not include any subjects of African ancestry, even when they include over a million subjects.
That exclusion means African American patients may not be getting suitable medical treatment.
The paper also says African Americans are twenty percent more likely to experience serious mental health problems than the general population.
Dr. Kafui Dzirasa, a psychiatrist at Duke University, said he did not know the extent to which Black subjects are missing from genomic studies before working on the paper. He studies the way genetics affects mental illness.
“There’s a profound difference when one is not included at all - in other words, excluded,” he said.
Dzirasa, who is African American, said mental illness has affected his family across generations.
“Here I was spending hours in the lab trying to come up with cures that may not apply to my family members,” he said.
Dr. Lesia Crumpton-Young, Provost at Morgan State University, hopes her work on the paper clarifies the need of diversifying research subjects.
“We're talking about the research base that helps us understand certain types of health disparities that may exist in our communities,” she said. “But we understand that that research base really doesn't include information about people who look like us: Brown, and Black people.”
She also called for greater diversity in the researchers conducting studies.
“When you have people from different backgrounds, working on scientific discoveries, then we know that's when we push the boundaries of those discoveries,” she said.
The paper says one reason why scientists have excluded Black subjects is because their genomic diversity is greater than that of any other race.
When subjects are more closely related and have fewer genetic variations between one another, it is easier for scientists to identify the genetic variations responsible for common illnesses.
Excluding Black subjects, the paper says, is therefore “scientifically opportunistic.”
Documented historical abuses of Black people by medical institutions have made them less likely to participate in studies. One of the paper’s solutions to earning that community’s trust, is the first ever African-American Neuroscience Research Initiative, founded in 2019.
It’s a partnership between Baltimore community leaders and the Lieber Institute, and it’s led by a local reverend, Dr. Alvin C. Hathaway, Sr.
“I think this will demonstrate a model for how you conduct participatory research in a way that the community that is most impacted is participating and involved as well,” he said.
Hathaway said he wants to make research more accessible to communities of color. He hopes the initiative would challenge negative perceptions of Baltimore, a predominantly Black city.
“Baltimore walks around with a black eye, where people think of it in negative terms, driven by media stories around violence and around disinvestment,” Hathaway said. “The intellectual capital of Baltimore is the story that is not really told.”
The initiative has since garnered local, state and federal support, including that of political leaders like Gov. Larry Hogan and Senator Ben Cardin.
“We have an opportunity collectively to do something very unique. At this time in space when the mantra is Black Lives Matter,” Hathaway said.
The reverend and the paper’s authors hope to host a conference at Morgan State University next October to engage the international scientific community.