With its February announcement of a two-year, $1 million grant to a new Baltimore initiative focused on racial disparities in the field of neuroscience, the Chan-Zuckerberg Initiative didn’t just take another step toward its goal of funding research leading to the cure or treatment of all human disease by the end of this century. The grant is also a step toward ensuring that fewer people will be left out of both the process and the benefits of that research.
CZI’s grant will help fund the development of the African Ancestry Neuroscience Research Initiative (AANRI), a partnership between Baltimore’s Lieber Institute for Brain Development, historically Black Morgan State University, and community leaders helmed by the Rev. Dr. Alvin C. Hathaway, the retired pastor of West Baltimore’s Union Baptist Church. First announced in 2019, AANRI’s aims include alleviating the Black community’s distrust of the medical and research establishment, eventually improving health outcomes by vastly increasing the racial diversity of donated brains available to neuroscientists studying the causes and treatments of everything from psychiatric disorders to Alzheimer’s Disease, and diversifying the field of neuroscience itself. AANRI has also attracted support from the Abell Foundation, Brown Capital Management, and the state of Maryland.
When it comes to the ways that the country’s health care system has betrayed and failed Black Americans, the infamous Tuskegee syphilis experiments of the 20th century are just one example of medicine’s many tresspasses. Other examples of medical neglect and outright abuse of Black patients includes forced sterilization, frequent failures to treat their pain or take it seriously, and the disparate toll of the COVID-19 pandemic.
There are also glaring disparities among practitioners. Only 4% of American physicians are Black, and it’s too early to tell whether the notable increase in Black medical school applicants in 2021 will translate to more representation in the profession. Given that history and today’s reality, it shouldn’t come as a surprise that underrepresented minority groups, including Black Americans, comprise less than 5% of the research cohorts in neuroscience research studies.
The lack of Black representation in neuroscience research subjects is a real problem in a country where Black Americans are twice as likely to develop Alzheimer’s, 20% more likely to develop serious mental health problems, and suicide rates for Black children under 13 are twice as high as the rates of children of European ancestry, according to AANRI’s website.
Increasing the diversity of donated brains to study isn’t “just about being representative for the sake of being representative and fair and proportionate,” said CZI Science Program Officer Katja Brose, who holds a Ph.D. in biochemistry. Instead, she said, it’s about bringing a deep and thorough level of science to bear on questions like the contributions of differences in genetics, or how much of an impact differing environments and life experiences, including experiences of racism, have on determining who may develop a brain disorder.
To put it another way, “we don’t even know what we don’t know,” said Patricia Flores, a senior communications associate at CZI who works closely with several of the funders’ scientists. “We just know that we’re missing a large swath of the pot. The majority of the globe is being missed in the science that we understand today.”
Is science funding diversifying?
CZI’s grant to develop AANRI is only one of several moves in the past few years aiming to promote more diversity in the sciences. In 2021, for example, the MacArthur Foundation committed $2 million to the Native Biodata Consortium, the world’s first Indigenous-led bio-repository, which, like AANRI, is also working to both diversify the field of medical research and help insure that the subjects of that research benefit from its results. Last year, the Howard Hughes Medical Institute launched a $2 billion initiative to diversify academic science more broadly.
CZI is also no stranger to moving money to promote greater diversity in the sciences. A quick look at the funder’s grants database reveals money being moved to scientific organizations focused on underrepresented groups, efforts like AANRI to diversify sample studies, and, in a 2021 grant to the Americas Health Foundation, efforts “to advance a more equitable rare disease advocacy and research ecosystem in the Caribbean and Latin America.”
Beyond the anecdotal evidence, it’s hard to say whether we’re seeing an overall uptick in funding in this area, but there’s definitely a lot of room for more such giving considering the far reach of federal and philanthropic science funding. The National Institutes of Health alone reports that it dedicates most of its $45 billion budget to medical research; last year, one study identified about $30 billion in annual philanthropic funding for scientific work.
One way we’ll truly know whether scientific funding, including money for medical research and to train new scientists and doctors, has truly diversified will be by watching for practical results. Are health disparities improving or disappearing? How common is it for a patient to be seen by a doctor or other health specialist who’s Black or another person of color? In the meantime, we’ll do our best to shout out funders’ efforts to promote diversity in the sciences — and call out funders who don’t seem to have gotten the memo.
