Who’s at risk for brain disease? Baltimore scientists need diverse subjects to find out

Published 2/27/2023 5:30 a.m. EST

Dr. Tom Hyde, chief medical officer, takes a sample from a donated brain. The Lieber Institute for Brain Development has been working to increase diversity in research, researchers and research subjects and recently got a grant to expand efforts.

The basement of the building on Johns Hopkins’ East Baltimore medical campus is lined with large extra-cold freezers containing what neuroscientists believe can help them answer long-standing questions about why people of African ancestry get some illnesses at higher rates.

The “freezer farm” contains brains — 4,000 of them — from infants to 102 years old, donated locally and around the country by families descending from Africa and the rest of the globe.

“We are all almost entirely genetically the same, 99.9%,” said Dr. Daniel R. Weinberger, director and CEO of the Lieber Institute for Brain Development, a Hopkins-affiliated nonprofit research organization that collects and studies the brains.

“We all walk, talk and think in the same way. There is no intellectual difference,” he said. “But there is this 0.1%, and it can produce crippling disease.”

Dr. Daniel Weinberger, Lieber director, 
discusses the acquisition of donated brains and the process they must go through. The Lieber Institute for Brain Development has been working to increase diversity in research, researchers and research subjects and recently got a grant to expand efforts.

Historically, however, there’s not been much neuroscience research into the disparities, and change has been slow. Lieber launched the African Ancestry Neuroscience Research Initiative in 2019 to promote racial equity not just in the research but among the researchers. Since then, Lieber scientists have begun analyzing the brains’ genomic data and plan to publish initial findings later this year.

Scientists have also begun looking into specific brain diseases, partnering with groups in the community and Morgan State University, a historically Black university in Baltimore that launched its own Center for Brain Health Research focused on health disparities in 2020.

They are collaborating not only in the lab but the classroom to develop a pipeline of neuroscientists. Morgan State interns are working at Lieber, and some scientists are now faculty at Morgan State.

Now helping the effort is a $1 million grant from the Chan Zuckerberg Initiative, a philanthropy established by Facebook founder Mark Zuckerberg and his wife, Priscilla Chan.

“Advancing equity and diversity in science is embedded in our work at the Chan Zuckerberg Initiative and is key for driving scientific progress and creating a healthier future for everyone — especially communities that have been historically underrepresented,” said Katja Brose, the group’s senior science program officer.

Weinberger said the answers about what predisposes someone to disease lie in the tiny slice of genes that in some cases mutated based on people’s ancestral place in the world.

Africans, for example, may have developed sickle cell disease because it helped prevent malaria, a common mosquito-borne infection. With no malaria threat, sickle cell is just a painful blood cell disorder in modern-day African Americans.

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At the Lieber initiative, scientists are exploring what may lead, for example, to Alzheimer’s disease, which is more common in Black than white people. The scientists are also looking at risk factors for autism, schizophrenia and other psychiatric brain disorders. Eventually, Weinberger said, diagnostic tools and treatments can be better tailored to individuals, a concept known as precision medicine.

The issue is that most research datasets that scientists use globally now are generated from people of European descent, though they make up less than 16% of the world’s population, Weinberger said. If scientists don’t incorporate diverse data in their research, “how will they know their findings apply?”

Lieber now has 700 brains donated from African Americans, 168 since 2019, as part of the collection, the world’s largest for the study of neuropsychiatric disorders.

Dr. Tom Hyde, chief medical officer, takes a sample from a donated brain. The Lieber Institute for Brain Development has been working to increase diversity in research, researchers and research subjects and recently got a grant to expand efforts.

They come to the institute several times a week packed in ice and then are carefully sliced by region of the brain, bagged, frozen and numbered to protect privacy. They are indistinguishable from one another, unless there is a visible tumor or trauma, said Dr. Thomas M. Hyde, Lieber’s chief medical officer.

He contacts families who have lost members to overdose, accidents, disease or age, and asks if they’d be willing to contribute to emerging science, and “about 70% say yes.”

The effort at diversity is ongoing but drawing attention from government and private groups that appreciate the importance of racial equity in specifically scientific work, Lieber officials say. Lieber has attracted funding from the Abell Foundation, Brown Capital Management and the state government, in addition to Chan Zuckerberg.

James Tooke shows where the donated brains are stored. They are kept in -80 degree freezers in individually marked boxes at The Lieber Institute for Brain Development.

The work is giving hope to people like Priscilla Agnew-Hines, who donated her son Larry Agnew’s brain to Lieber at a site near her home in Muskegon, Michigan, after he died of an overdose. She became a substance use recovery coach and has been learning about causes of substance use and mental health disorders in the Black community.

Together with her grandson, Larry Agnew Jr., she wanted to do more to help scientists learn.

“He was a good man, a loving son and father, and his light was awesome and it’s what attracted people to him,” Agnew-Hines said.

“We need to understand, to take time to study and see what causes this,” she said of behavioral health disorders in African Americans. “What triggers these things?”

She has been thrilled that her grandson, a 20-year-old now living in Atlanta, has taken an interest in reading research about drug effects on the brain and sharing it. He said he also wants scientists to continue exploring the roots of addiction.

“My dad wasn’t able to figure out on his own why his mind was how it was,” he said. “If there is a difference in his brain, in people’s brains, we can understand and learn something new from this situation.”

Scientists at Lieber hope to give families answers about why some are predisposed to disease.

To help build Lieber’s African Ancestry Neuroscience Research Initiative framework, officials turned to someone they believed could forge the needed connections in a community that has at times been mistreated by the medical establishment.

They recruited Alvin C. Hathaway Sr., retired pastor of the Union Baptist Church in Baltimore, who also has experience in community organizing and promoting equitable economic development.

Dr. Al Hathaway, retired as pastor of Union Baptist Church helps the effort at The Lieber Institute for Brain Development. The institute has been working to increase diversity in research, researchers and research subjects and recently got a grant to expand efforts.

He said the mission of reducing disparities in scientific research and making the field more inclusive would go a long way to rebuilding trust and ensure personalized medicine is available to everyone.

That became a passion after witnessing the effects of health disparities and lack of access. He said his family struggled to get proper care for his developmentally disabled brother growing up and again while he was working as a faith leader in Baltimore.

Hathaway has done time “with a bullhorn on the street” demanding changes to benefit the African American community but came to realize institutional structures are put there by people.

“You can talk to them if you’re inside and have a seat at the table,” he said.

“Here, I can continue my ministry,” he said. “This is a social justice issue for me.”