The Importance of Improving Diversity in Neuroscience Research
More than 6.2 million Americans live with Alzheimer’s Disease. While there is a high level of ongoing research into this disease, only 5% of neuroscience research subjects are from underrepresented populations. Last week, Research!America held an alliance discussion, moderated by Jenny Luray, Research!America Senior Vice President of Strategy and Public Engagement, with the African Ancestry Neuroscience Research Institute (AANRI) to discuss the impact of underrepresentation and potential remedies to close that gap. AARNI is a collaboration between African American community leaders in Baltimore, the Lieber Institute for Brain Development, and Morgan State University. The organization is dedicated to improving diversity in neuroscience to address longstanding health disparities in research. The Rev. Alvin C. Hathaway, Sr.; Daniel Weinberger, MD; Kafui Dzirasa, MD, PhD; and Gwenaëlle E. Thomas, PhD; joined Alliance members to discuss the impetus for AANRI, how they are ensuring representation and the benefits to their research. The following excerpts were taken from their discussion:
Pitfalls of the Human Genome Reference:
The human reference genome, the genome used by researchers as a comparator for sequence variation, is missing 10% of the African genome, more than 300 million base pairs. In one neuroscience study of almost 5 million individuals, none of the subjects were of African descent. Underrepresentation like this, according to Thomas, is one of the main reasons AANRI was created. The Initiative aims to “understand and increase not only the subject inclusion, but the subject diversity so that we can start to understand how these different psychiatric illnesses are affecting people of African ancestry.”
Importance of Avoiding Comparison:
“We were very concerned that, if we made a comparison [of Black and white brains], we would have no way of interpreting what the differences represented. Did they represent systematic environmental differences that vary across these groups, or could we attribute them to ancestry?” Weinberger said. To avoid these issues, the research team decided to focus solely on the brains of those who self-identified as Black. Because the majority of African Americans are of mixed ancestry, a diverse array of ancestries can be studied even when research is focused on brains donated by Black Americans, he added.
Benefiting Everyone:
Variety of ancestry is a benefit to research but focusing on specific groups can also help identify trends in variation not visible when looking at a large range of individuals. According to Dzirasa: “it may be the case that, by studying human variation differences across ancestry, you may actually be discovering the treatments that help everybody by enriching our data sets with people of more of different backgrounds and experiences.”
Ensuring Equity in Inclusion:
“I thought it was very important that the consent process was a very documented and accurate and inclusive process,” Hathaway said. To foster participation, all aspects of research must be consciously designed. AARNI developed both an inclusive consent process and a role for the community in developing the Initiative. “The community had a real stake in role in the development of [AARNI]” Hathaway shared. This allowed for true collaboration and the development of trust in the scientists and their research which, in turn, helped to increase community participation.