As a Black first-year genetic counseling student, I am constantly delving into articles and papers for my coursework. Repeatedly encountering demographic information that categorizes participants as "Black/African American" in the "Race/Ethnicity" sections has become a source of frustration for me. Witnessing the persistent cultural erasure of every Black individual participating in these studies is disheartening, particularly when these categorization decisions are frequently guided by non-Black investigators.

I am Black AND African American. I have had the privilege of knowing and loving one great-great-grandmother and three great-grandmothers, but I cannot trace my ancestry beyond the Southern United States (U.S.). Despite recognizing and grieving the unfair and inhumane history of Africans being forced from their homes and into slavery, I take pride in the resilience of my ancestors who shaped and sustained African American culture, traditions, and language (Ebonics or AAVE - African American Vernacular English). However, it’s crucial to recognize that this specific label and cultural pride does NOT extend to every Black person in this country. No one should be forced to categorize themselves in a way that is inauthentic to their cultural, personal, and societal experiences. Every Black person should have the autonomy to accurately label themselves, representing their unique cultural pride and ancestral history.  

Race vs. Ethnicity: Why does it matter?  

Race is based on common physical traits among people of shared ancestry (Flanagin et al., 2021). Ethnicity is a state of belonging to a group of people who share culture, including but not limited to “language, ancestry, practices, and beliefs” (Flanagin et al., 2021). In this context, “Black” refers to a race while “African American” refers to an ethnicity. Yet, these two labels are frequently interchanged or merged, leading to the categorization of all Black people in the U.S. as African Americans without consideration for their distinct cultural histories and current practices. Other ethnicities of Black people in the U.S. that immediately come to mind are Afro-Latine/a/o/x, Caribbean American, Jamaican American, Haitian American, and Nigerian American, amongst numerous other unique ethnicities. Unfortunately, African American is frequently used as the ostensibly “polite” and “politically correct” umbrella term for Black individuals, overshadowing the richness of their diverse ethnic and cultural backgrounds. 

Race and ethnicity, while lacking precise biological foundations, are social constructs with significant relevance in studying systemic racism and healthcare disparities (Flanagin et al., 2021). Individuals often embody multiple racial and ethnic identities, highlighting the interconnected nature of these categories, making it essential not to discuss them in isolation (Flanagin et al., 2021). Without accurately collecting this more detailed information from Black patients, participants, communities, and students, any conclusions drawn do not fully encapsulate the intricacies and differences within the Black experience.

Who Is African American? 

From “Colored” to “Negro” to “Black” to “African American,” Black people in the United States have been called an array of terms throughout history. In 1988, Rev. Jesse L. Jackson, Sr. suggested Black Americans should be called “African-Americans” to create and promote ethnic identity and cultural integrity (Martin, 1991). He argued that other ethnic groups in the U.S. had an identity label with “some historical cultural base,” such as “Italian-Americans” and “Armenian-Americans” (Martin, 1991). Jackson supported his notion by saying that “African-American” would emphasize pride and a heritage connection to the country of origin and the current location (Martin, 1991). Within this historical context, African Americans are descendants of enslaved Africans in the U.S., unable to trace their lineage beyond this country due to the catastrophic multigenerational impacts of the transatlantic slave trade. Currently, some of those who fall under this definition do not identify as African American and may instead identify with “Black American” or “Black,” especially if they do not share a direct connection to an African country. 

The Responsibility To KNOW Better, then DO Better 

Perceiving and categorizing every Black student, patient, or research participant as African American is the erasure of Black histories and cultures. Conflating these two interconnected but distinct labels compels every Black person to “self-identify” with an identity that does not align with their experience. Consequently, in research, the nuances of ethnic differences within the Black experience are often overlooked, undermining the accurate representation of this historically disadvantaged population. In genetic counseling programs, discussions around diversity, equity, inclusion, and justice (DEIJ) disproportionately focus on the African American experience. In genetic counseling appointments, Black patients are often seen through a singular cultural lens, overlooking the fact that not all identify with the African American experience within the US. The solution to inaccurate labeling of Black people is to ASK how every individual defines their race and ethnicity. 

Questions to ask yourself as a member of the genetic counseling profession when interacting with Black people globally, but especially within the U.S.: 

• How is race/ethnicity being used in this clinical setting or research study? 
  • Is this information needed to achieve the intended goal? 
• When interacting with a Black patient or student, am I automatically assuming they are African American, expecting them to be able to relate to a specific culture?
• During DEIJ discussions and initiatives, which populations and cultures am I actually referring to?
• Do I assume:
  • That any two Black individuals share the same cultural practices?
  • That all Black people use and know AAVE?
  • That every Black person speaks English as their first language?
  • That all Black people relate to American slavery? 
  • That all Black people identify as an “American” before any other nationality? 
• Am I capitalizing the “B” in Black when writing? (Coleman, 2020)

Black and African American are distinct labels. Recognizing and respecting this differentiation is essential in the genetic counseling profession to cultivate a more inclusive and culturally sensitive approach to student supervision, patient care, and research.  

References

Coleman, N. (2020, July 5). Why We’re Capitalizing Black. The New York Times. https://www.nytimes.com/2020/07/05/insider/capitalized-black.html

Flanagin, A., Frey, T., Christiansen, S. L., & Bauchner, H. (2021). The Reporting of Race and Ethnicity in Medical and Science Journals: Comments Invited. JAMA, 325(11), 1049–1052. https://doi.org/10.1001/jama.2021.2104

Martin, B. L. (1991). From Negro to Black to African American: The Power of Names and Naming. Political Science Quarterly, 106(1), 83–107. https://doi.org/10.2307/2152175

---