When I was the pastor of a large Baptist church, people often came to me asking me for help. These requests tended to be about domestic relationships, trauma from grief, or spiritual counseling. But an appeal from a young woman in my congregation about becoming a cancer researcher resonates with the new work I am doing since giving my last sermon as pastor in August 2021.
At the time, the woman was a student at Hampton University, a historically black school in Hampton, Virginia. She told me she wanted to become a cancer researcher, but wasn’t sure how to enter the field. I connected her with other members of the church who work in biomedical research, as well as with leaders at the University of Maryland I had come to know through my work with the church and community. Today, she works in the cancer research division at Johns Hopkins University.
She shouldn’t have had to come to her pastor for this help. Instead, a clear pathway and ladder of advancement should have been clearly visible to her and other students of color in the sciences. People seeking to work in labs or with patients shouldn’t be dependent on who knows who, which favors the most privileged. Instead, finding the path to medical research should be based on a person’s desire to know and help others.
After stepping down as pastor of Union Baptist Church in Baltimore in 2021, I’ve focused on serving my community in a different way: ensuring that the benefits of neuroscience reach more people of color by ensuring they are leading research as well as participating in clinical trials and research. This work, which started three years ago, is the result of a winding path, spurred by some childhood experiences, my encounter with the young woman who wanted to be a cancer researcher, and events.
I first saw the need for better medical care and understanding of brain science in the African American community in the experiences of my older brother, Charles, who was born with an intellectual disability that required special care. Throughout his life, our family and community rallied to provide support, but I always wondered if there were treatments or care that could have helped Charles had the science been better.
When I was in the seminary, I met Patricia Outlaw, a doctor of ministry and a psychologist. She entered class to teach one day in a jogging suit, explaining she’d just come from the National Institutes of Health, where she was participating in a study on aging that tracked the health of a range of participants over decades. She explained that she became involved in this study because there was a critical need for more African American participants. My wife and I signed up to participate and we’re still participating 20 years later.
Over the years, as I’ve interacted with African American scientists in my church and across Maryland and beyond, I’ve come to realize that if medical science is to benefit everyone, it is essential to engage a more diverse group of people to participate in and lead research.
To be clear, despite the fact that humans of all races and backgrounds are about 99.9% genetically identical, the 0.1% difference varies based on ancestry and can hold the answers to patterns that emerge between races, geographies, or demographic groups. Those slight variations may hold the answers to why some people are more likely to experience some illnesses and others are less likely. When science focuses on the genomes of people of European descent — as it has overwhelmingly done — insights that benefit everyone are missed.
President Obama launched the Precision Medicine Initiative to recognize that one-size-fits-all approaches to illness and treatment do not fit all individuals based on ancestral, social, and cultural differences. This is not just a science issue. It’s also a social justice issue.
This reality is what led me to start the African Ancestry Neuroscience Research Initiative (AANRI), a partnership between community leaders, Morgan State University, and the Lieber Institute for Brain Development. The focus on neuroscience stems from two critical facts.
The first is that many mental illnesses are more prevalent in people of African ancestry than those of European ancestry. African Americans are 20% more likely to experience serious mental health problems than the general population and twice as likely to develop Alzheimer’s disease. Yet only about 5% of participants in research studies of brain disorders are people from underrepresented racial or ethnic groups.
The second fact is that African American scientists comprise only about 4% of neuroscience Ph.D.s, according to the Society for Neuroscience. Just 3% of neuroscience postdocs and 1% of neuroscience faculty members in the U.S. are African American. Diversity must be part of who is designing and conducting medical research, as well as who is participating in it.
In one AANRI collaboration, scientists with the Lieber Institute are working with their existing genomic dataset from people of African ancestry. One of the team members is a graduate student from Morgan State University who will complete her master’s thesis at Lieber. This is an example of a pathway for engaging more students of African ancestry in the neurosciences while creating more diversity among the populations scientists study.
As leaders in science work to make this vast endeavor more diverse and inclusive, communities of color must be engaged at the start of the scientific process and throughout its entirety. Communities most affected by an illness, or those that have been shut out of medical research, must have a central voice in shaping the future of research. That is what makes involving more African Americans in medical research a social justice issue. Efforts to make science more diverse, inclusive, and equitable that fail to view science as a participatory process will continue to fail.
As I pastor, I often preached about the power and potential of individuals and communities. My latest calling, working to ensure that those who shape the future of science aren’t selected by happenstance, chance encounters, or paths that are only accessible and visible to some, isn’t so different.
Rev. Alvin C. Hathaway Sr. is the chief executive officer of the African Ancestry Neuroscience Research Initiative and pastor emeritus of Union Baptist Church in Baltimore.
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