Black History Month: Bearing the torch of equity as an African-American genetic counselor and scientist

Black History Month is a time of recognition of the pivotal role individuals of African descent have played in U.S. history. It’s a time to reflect on achievements made in the face of racism, discrimination, and inequalities in education, workplace and healthcare. And because these concerns are ongoing, it’s also a time to commit to the many changes that still need to be made. As an African-American genetic counselor and scientist, this February, I reflect on the past, am motivated by the present and am empowered to help create a future legacy that fosters equity, diversity and inclusion, both for those working in the field as well as the individuals we pledge to assist.

 

It's My Responsibility to Pay It Forward

I’ve always been fascinated with my family history and heritage. Growing up in rural Tennessee, I eagerly anticipated summer visits from my lively and humorous aunts and uncles who lived in Washington, D.C., and Illinois. They would take turns in the kitchen cooking delicious and hearty recipes, often accompanied by the singing of gospel spirituals. They reminisced about our elders, shared elaborate stories about their childhood and sometimes revealed frightening details about experiences that motivated them to move north. As an adult, I realize the days I spent with my family griots (the storytellers and oral historians) primed me for my chosen profession, a field in which we build rapport with patients and listen to them tell their respective stories within the context of their health. It turns out that many of the customs and traditions that I was taught to honor and regard while growing up in Tennessee also overlap with my Nigerian, Ghanaian, Liberian, Sierra Leonean, Senegambian and Congolese (Coastal West African) heritage.

Five years ago, I saw my first patient as a cancer genetic counselor. To this day, that encounter is one of the most memorable experiences of my career. I had the pleasure of counseling an elderly African-American woman with a history of breast cancer. Although she previously consented to genetic testing, she had not had the opportunity to undergo genetic counseling. While I envisioned my role to be primarily informative and supportive, I realized the value in letting the session flow and allowing my patient to tell her story.

At the end of the session, my patient graciously thanked me and accepted my business card. Glowingly, she looked up from my card, and warmly said, “You have your Ph.D.!” I replied, “Yes ma'am, I graduated from Howard University with a Ph.D. in genetics and a specialization in genetic counseling.” My patient proceeded to address me as “Dr. Ewing.”  I stammered to explain that I wasn’t quite comfortable owning that title yet, nor did I feel it was appropriate for me to use in a clinical setting. My patient sternly, but compassionately interrupted me, saying “I do not care how comfortable you are with a title. You earned your degree and your family sacrificed for you to accomplish such an achievement.” In that moment, my apprehension faded with my patient’s recognition that my presence in this field is much bigger than I am. She helped me understand not only that I should be proud of my position but also recognize that it is my responsibility as an African-American genetic counselor and scientist to pay it forward.

In my commitment to do just that, I am motivated by Dr. King’s inspiring words: “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.”  I consider the opportunity to serve in this profession an honor and a privilege to help level the playing field of access, utilization, knowledge and representation. As an African-American genetic counselor and scientist, I represent my community and serve as an example for those who come after me, while paying reverence to those who charted the path. At times, I admit that I place unrealistic and undue pressure on myself to perform because of the perception there is no room for mistakes in a field like this for someone who looks like I do. I worry that one misstep could have consequences not only for me, but also for my community. But in my sensible moments, I realize the goal of eliminating health disparities and diversifying the profession does not rest on my shoulders alone. Instead, it is the responsibility of every genetic counselor, whatever his or her heritage.

 

We Will Create a More Diverse and Inclusive Workforce

While only 1 percent of those who responded to the 2018 NSGC Professional Status Survey identified as Black or African American, I am optimistic that as we roll up our sleeves, increase our outreach efforts and intentionally extend opportunities to populations that have been historically underrepresented in our profession we will create a more diverse and inclusive workforce. This will allow our profession to play a pivotal role in our ability to eliminate health disparities. To do this, all genetic counselors must draw from our value system and Code of Ethics. We must recognize the relevance of these principles in our ability to connect with underserved and underrepresented populations. Therefore, I respectfully pose the following to all genetic counselors: How can we fulfill our ethical obligation to underserved and underrepresented populations? How do we all take responsibility to ensure that our profession is reflective of the patients we serve? Let us all bear the torch for equity and prove why embracing diversity and fostering inclusion matters and why it will truly benefit us all. With efforts such as NSGC’s 2019-2021 Strategic Plan, which includes a diversity and inclusion (D&I) initiative and the establishment of a new D&I task force, the momentum is stronger now than ever.

Altovise.jpg

 

Altovise Ewing, PhD, LCGC, is a board-certified genetic counselor and medical science liaison (MSL) at 23andMe. She is also trained as a health disparities researcher and dedicates her professional career to ensuring that emerging genetic and genomic services and resources do not further exacerbate racial and ethnic health disparities. A sincere thank you to Ms. Eleina Cox, CGC, for her input on this post.

 

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