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Mental illness can run in families. And Dr. Kafui Dzirasa grew up in one of these families.
Its close relatives include people with schizophrenia, bipolar disorder, and depression. As a medical student, he learned about those who had been admitted to psychiatric hospitals or who “disappeared” and were discovered in the alleys.
Dzirasa decided to devote his career to “understanding how to make science relevant to ultimately help my family”.
He became a psychiatrist and researcher at Duke University and began studying the links between genes and brain disorders.
Then Dzirasa realized something: “I was studying genes that were specifically related to the disease in people of European descent.”
His family had emigrated from West Africa, which meant that whatever he discovered might not be applicable to them.
Dzirasa also realized that people with his ancestors were missing not only from genetic research, but from the entire field of brain science.
“It was a really overwhelming moment for me,” he says.
So when a group in Baltimore asked Dzirasa to help do something about the problem, he said yes.
The group is the African Ancestry Neuroscience Research Initiative. It is a partnership between community leaders and the Lieber Institute for Brain Development, an independent, non-profit research organization on the medical campus of Johns Hopkins University.
The goals of the Lieber Institute include reducing health disparities and ensuring that brain research includes individuals from all populations.
A story of exclusion
Early genetic studies were often limited to people of European descent. Scientists believed that focusing on this population made it easier to link a particular gene to a specific disease.
Now that genetic tools have become cheaper and more powerful, studies include other groups. Even so, the vast majority of large genomic datasets come from people of European descent.
Furthermore, African Americans and other underrepresented minorities make up only about 5% of people in genetic research studies.
These disparities are of particular concern when it comes to brain disorders that are more prevalent in people of African descent, says Dr. Daniel Weinberger, CEO of the Lieber Institute.
African Americans are about 20% more likely than other people to experience a serious mental health problem and possibly twice as likely to develop Alzheimer’s disease.
To understand how genetics and the environment interact to cause these high disease rates, “you have to study the brain,” says Weinberger.
And this is where the Lieber Institute had something to offer. Over the past decade, he has received more than 700 brains from African American families who have chosen to donate the brain of a dead relative.
As part of the African ancestry initiative, “we produced molecular data – detailed molecular data – on about 300 brains of African Americans, plus about 1,000 brains of people of European descent,” Weinberger says.
By comparing these brains, scientists hope to understand why Alzheimer’s occurs more often in African Americans. They also hope to learn why having African descent can sometimes protect a person from the disease.
For example, Weinberger says, there is a genetic mutation that greatly increases the risk of Alzheimer’s in people whose ancestors were from Europe.
“If you are of African descent, the risk of inheriting that gene from both of your parents is about a quarter of what it is if you are of European descent,” he says.
Understanding why this could lead to a drug that would protect all people, Weinberger says.
A question of trust
This kind of research is complicated in a nation that has often mixed science and racism.
Baltimore was the home of Henrietta Lacks, an African American woman whose cancer cells had been taken and grown in the laboratory without her consent or knowledge. Those cells, which had the ability to divide without aging, have become one of the most important discoveries in medical research.
And research suggesting a link between race and intelligence continues to fuel social debates, although most scientists dismiss the idea.
“When you start talking about the brain, you start talking about the genomic dataset – immediately within the community that triggers all kinds of suspicions,” says Rev. Alvin Hathaway Sr., pastor of Union Baptist Church in Baltimore and a participant in the neuroscience research initiative.
Hathaway has worked to ensure that the effort is transparent and inclusive.
For example, he wanted to involve Morgan State University, a historically black public school in Baltimore. So he turned to the Lieber Institute with a big request: “That I should have people from Morgan at every stage of this process, from technicians to principal investigators to researchers,” he says. “And there has been overwhelming acceptance of that.”
Other efforts to diversify research have often left fundraising to whites, Hathaway says. But not this.
“In this process, at every stage of the process, including in terms of capital formation, we have been actively, deeply involved,” he says, adding that one of the first investors was an African American.
In July, the effort garnered a $ 1 million commitment from Brown Capital Management, a Baltimore company founded and run by an African American. The state of Maryland has pledged another $ 1.25 million.
And all of this is gratifying to Dzirasa, the brain scientist whose lab research was motivated by his family’s struggles with mental illness.
“Within each day, believing it is the day I will make the discovery that will totally transform my family’s life,” he says.