Mental illness can run in families. Dr. Kafui Dzirasa grew up in his one of these families.
His close relatives include people with schizophrenia, bipolar disorder, and depression. As a medical student, he learned that people who had been incarcerated in mental hospitals or who had “disappeared” were found in alleys.
Dzirasa decided to dedicate her career to “finding ways to make science relevant to ultimately help my family.”
He became a psychiatrist and researcher at Duke University and began studying the link between genes and brain disorders.
Dzirasa noticed something.
His family immigrated from West Africa, so everything he discovers may not apply to his family.
Dzirasa also realized that people of his ancestry are missing from the entire field of brain science, not just genetic research.
“It was a really shocking moment for me,” he says.
So when a group in Baltimore asked Dzirasa for help with this issue, he said yes.
This group is the African Ancestry Neuroscience Research Initiative. This is a partnership between his community leader and the Lieber Institute for Brain Development, an independent, non-profit research organization located on Johns Hopkins University’s medical campus.
The Lieber Institute’s goals include reducing disparities in healthcare and ensuring that brain research includes individuals from all populations.
history of exclusion
Early genetic studies were often restricted to people of European descent. Scientists thought that focusing on this population would make it easier to link specific genes to specific diseases.
Now that genetic tools have become cheaper and more powerful, research also includes other groups.
Also, African Americans and other underrepresented minorities make up only about 5% of genetics research subjects.
These disparities are particularly troubling when it comes to brain disorders, which are more common in people of African descent, according to Lieber Institute CEO Daniel Weinberger, PhD.
African Americans are about 20% more likely than other people to experience severe mental health problems and perhaps twice as likely to develop Alzheimer’s disease.
To understand how genetics and environment interact to cause these high rates of disease, “we need to study the brain,” says Weinberger.
And there was what the Lieber Institute could offer. Over the past decade, we have received over 700 brains from African American families who chose to donate the brains of their deceased relatives.
As part of the African Ancestry Initiative, “we created molecular data (detailed molecular data) on about 300 brains of African Americans and about 1,000 brains of people of European descent,” says Weinberger.
By comparing these brains, scientists hope to figure out why Alzheimer’s disease occurs more frequently in African Americans. I would like to learn why I can protect myself from
For example, Weinberger says there are genetic mutations that greatly increase the risk of Alzheimer’s disease in people whose ancestry came from Europe.
“If you’re of African ancestry, the risk of inheriting the gene from both parents is about one-fourth that of European ancestry,” he says.
Figuring out why that is, says Weinberger, could lead to a drug that protects everyone.
This kind of research is cumbersome in a country that has often confused science with racism.
In Baltimore lived an African-American woman, Henrietta Lux. Henrietta Lux had her cancer cells harvested and grown in her lab without her consent or knowledge. Cells that had the ability to divide without aging became one of the most important discoveries in medical research.
Also, research suggesting a link between race and intelligence continues to fuel social debate, but most scientists deny the idea.
“When you start talking about the brain, you start talking about genomic datasets, within a community that immediately raises all kinds of suspicion,” said the pastor of Baltimore’s Union Baptist Church and a participant in the Neuroscience Research Initiative.
Hathaway has worked to ensure that our efforts are transparent and inclusive.
For example, he wanted to involve Morgan State University, a public, historically black school in Baltimore. So he made a big request to the Lieber Institute. “And it was overwhelmingly accepted.”
Other efforts to diversify research often leave funding to whites, Hathaway said. But not this.
“At every stage of this process, even in terms of capital formation, we have been actively and seriously involved,” he said, adding that one of the first investors was an African-American.
In July, the initiative received a $1 million commitment from Brown Capital Management, a Baltimore firm founded and run by African Americans. Maryland also promised him $1.25 million.
Neuroscientist Dzirasa is happy with all that. Dzirasa’s lab work is motivated by his own family members battling mental illness.
“I believe that every day I will make a discovery that will completely change my family’s life,” he says.