MARY LOUISE KELLY, HOST:
Black Americans are more likely than white Americans to have a serious mental illness or Alzheimer's disease. Despite that fact, studies of these disorders often exclude people with African ancestry. Now a group of scientists and community leaders is working to change that. Here's NPR's Jon Hamilton.
JON HAMILTON, BYLINE: Mental illness can run in families. Dr. Kafui Dzirasa knows all about that.
KAFUI DZIRASA: My family members suffer from a broad range of illnesses that we would diagnose as schizophrenia, bipolar disorder and depression.
HAMILTON: In medical school, Dzirasa learned how profoundly those disorders had affected his relatives.
DZIRASA: So learning about family members that were committed in different hospitals, a family member that went missing and we discovered them in an alleyway - and I wanted to dedicate my career to figuring out how to make science relevant to ultimately help my own family.
HAMILTON: Dzirasa became a psychiatrist and scientist at Duke University and began exploring the links between genes and mental illness. Then he realized something.
DZIRASA: I was studying genes that were specifically related to illness in folks of European ancestry.
HAMILTON: Dzirasa's family came from West Africa, and people with his genetic background were largely missing both from research studies and from the entire field of neuroscience.
DZIRASA: I suddenly found myself in this enterprise where it was like, we don't have folks studying the illness. We're not represented in the genes. The medications don't work as well. It was a really crushing moment for me.
HAMILTON: 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 was created in 2019 by community leaders and the Lieber Institute for Brain Development. Dr. Daniel Weinberger, Lieber's CEO, says including more Black people in genetic studies is the first step.
DANIEL WEINBERGER: When it comes to studies of the brain, which are critical for translating these big population genetic studies into understanding mechanisms of disease, you have to study brains. You have to have brains.
HAMILTON: And in the past decade, the Lieber Institute has received more than 700 of them from African American families who donated the brain of a relative who died. Weinberger says the African Ancestry Initiative is making the most of that resource.
WEINBERGER: We have produced molecular data, detailed molecular data, on about 300 brains of African Americans plus about a thousand brains of European ancestry.
HAMILTON: One question the initiative hopes to answer is why African Americans appear twice as likely to develop Alzheimer's, and it's also looking at ways African ancestry seems to protect people from the disease. For example, Weinberger says, studies show that inheriting two copies of a gene variant called APOE e4 increases the risk of Alzheimer's at least tenfold in white people.
WEINBERGER: If you're of African ancestry, the risk from inheriting that gene from both your parents is about a fourth of what it is if you're of European ancestry.
HAMILTON: Understanding why might lead to a drug that helps everyone. This sort of research is tricky in a nation that has mixed science and racism. Reverend Alvin Hathaway is the pastor of Union Baptist Church in Baltimore and a leader of the neuroscience initiative.
ALVIN HATHAWAY: When you begin to talk about the brain, you begin to talk about genomic data set, immediately within the community, that triggers all kinds of suspicions.
HAMILTON: So Hathaway is making sure this effort is transparent and inclusive. He decided to involve Morgan State University, a historically Black school in Baltimore, and he went to the Lieber Institute with a big request.
HATHAWAY: That I should have persons from Morgan at every step of this process, from technicians to principal investigators to researchers. And there was overwhelming acceptance of that.
HAMILTON: Hathaway says efforts to increase diversity often leave fundraising to white people.
HATHAWAY: But in this process, every step of the way, even in terms of capital formation, we've been actively, acutely involved in that - so much so, one of the early principal investors was a African American investor.
HAMILTON: In July the initiative got a $1 million commitment from Brown Capital Management, a Black-owned business in Baltimore. The state of Maryland has promised another 1.25 million. And all of that is gratifying to brain researcher Kafui Dzirasa.
DZIRASA: I go in every day believing that that is the day that I will make the discovery that is going to totally transform my family's life.
HAMILTON: If he does, it will transform the lives of many other families as well.
Jon Hamilton, NPR News.
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