Karen Santos for NPR
Altovise Ewing, who has a doctorate in human genetics and counseling, now works as a genetic counselor and researcher at 23andMe, one of the largest direct-to-consumer genetic testing companies, based in Mountain View, Calif.
Karen Santos for NPR
Altovise Ewing was a senior at Rhodes College in Memphis, Tenn., when she first learned what a genetic counselor was. Although she had a strong interest in research, she suspected working in a lab wasn't for her — not enough social interaction.
Then, when a genetic counselor came to her class as a guest lecturer, Ewing had what she recalls as a "lightbulb moment." Genetic counseling, she realized, would allow her to be immersed in the science but also interact with patients. And maybe, she thought, she'd be able to help address racial health disparities, too.
That was 15 years ago. Ewing, who went on to earn a doctorate in Genetics and Human Genetics/Genetic Counseling from Howard University, now works as a genetic counselor for 23andMe, one of the largest direct-to-consumer genetic testing companies. As a black woman, Ewing is also a rarity in her profession.
Genetic counselors work with patients to decide when genetic testing is appropriate, interpret any test results and counsel patients on the ways hereditary diseases might impact them or their families. According to data from the U.S. Department of Labor's Bureau of Labor Statistics, the number of genetic counselors is expected to grow by 29% between 2016 and 2026, compared with 7% average growth rate for all occupations.
Karen Santos for NPR
23andMe's Ewing says the lack of ethnic diversity among genetic counselors in the U.S. reduces some people's willingness to participate in clinical trials, "because they're not able to connect with the counselor or the scientist involved in the research initiative."
Karen Santos for NPR
However, despite the field's rapid growth, the number of African Americans, Hispanics and Native Americans working as genetic counselors has remained low.
As genetics' role in medicine expands, diversity among providers is crucial, say people working in the field. "It is well documented that people want medical services from people who look like them, and genetic counseling is not an exception," says Barbara Harrison, an assistant professor and genetic counselor at Howard University.
Ana Sarmiento, who wrote her master's thesis on the importance of diversity among genetic counselors, has seen this firsthand.
"I can't tell you how many times I've seen the look of relief on a Spanish-speaking patient's face when they realize they can communicate with me," says Sarmiento, a recent graduate of Brandeis University's genetic counseling program. "It's what keeps me passionate about being a genetic counselor."
Ethnic and gender diversity among providers can also increase the depth and scope of information patients are willing to share in the clinical settings — information that's important to their health.
"In my opinion," says Erica Price, who just received her master's in genetic counseling from Arcadia University, "no one fights for the black community the way other black people do. I encounter a lot of other African Americans who don't know what genetic counseling is. But when they find out that I'm a genetic counselor, they will give me their entire family medical history."
Bryana Rivers, who is African American, recently graduated from the University of Cincinnati's genetic counseling program, and wrote last year about her experience with a black mother whose two children had undergone extensive genetic testing to try to determine the cause of their developmental delays.
Having a firm diagnosis, the mother explained to Rivers, could help the children get access to the resources they needed in school. The mom wanted to know if the genetic variant that had been identified in her children — one that geneticists had decided was a "variant of unknown significance" — had been observed in other black families.
That question, which she hadn't brought up in earlier discussions with health providers who weren't African American, led to a broader, candid discussion of what these unknown variants mean and don't mean, and why they are more common among members of understudied minorities.
"I cannot stress enough how important it is for patients to feel comfortable, to feel heard, and to know that they will not be ignored or discriminated against by their providers based on the color of their skin," Rivers wrote in her blog post.
"I don't want to suggest that a genetic counselor who wasn't black wouldn't have listened to her, but there are factors outside of what we do and say that can have an impact on our patients. Just the fact that she was able to lower her guard a bit because we share the same racial background as her speaks volumes."
In an interview Rivers also recounted a recent session conducted by a white female genetic counselor that Rivers was shadowing that day. The patient, who was a black woman, addressed all of her answers to Rivers, although Rivers' official role was to merely observe the appointment.
"I do feel a responsibility as a black provider to look out for my black patients and make sure they are receiving the appropriate care," Rivers says. "Not everyone is willing to go that extra mile, and they may be more dismissive of the concerns of black patients and may not actually hear them."
Ewing, who also conducts research, adds that the lack of diversity among genetic counselors has had a negative impact on research.
"The lack of diversity has an effect on the willingness of minorities to pursue clinical trials, because they're not able to connect with the counselor or the scientist involved in the research initiative," she explains. "We are now in the era of precision and personalized medicine and we need people who are comfortable talking about genetic and genomic information with people from all walks of life, so that we're reaching all demographics."
Since 1992, the National Society of Genetic Counselors, the largest professional organization for genetic counselors in the United States, has conducted an annual survey on the demographics of its members. Between 1992 and 2006, non-Hispanic white genetic counselors made up 91 to 94.2% of the NSGC's membership.
In 2019, 90% of survey respondents identified as Caucasian, while only 1% of respondents identified as Black or African-American. Just over 2% of respondents identified as Hispanic, 0.4% identified as American Indian or Alaskan Native.
Some genetic counselors cite a lack of awareness among underrepresented minorities of genetic counseling as a profession as a major barrier to diversity in the field. Rivers says she had little exposure to genetic counseling as a future career path while enrolled as a biology major at the University of Maryland.
"My university stressed medical school, nursing school, or a Ph.D. in the biological sciences," Rivers recalls. "I only had one professor in four years bring up genetic counseling."
Samiento concurs. "You don't have 6-year-olds running around saying 'I want to be a genetic counselor' — because it's not a high visibility profession," she says. "There are also very few minority professionals in the training programs and it takes a brave minority to look at the sea of white female faces and say 'yes I can fit in here.' "
"Genetic counseling is still a relatively new profession and there hasn't been enough time and exposure for people to view [the field] the way they view other medical professions," says Price. "People have asked me why I would pursue genetic counseling when I could be a physician assistant or a nurse or go to medical school."
After Price's acceptance to graduate school, one of her undergraduate professors questioned her chosen career path. "She said to me, 'You're a black woman in the sciences. We could have gotten you into a Ph.D. program or something where you're making more money.' "
As a part of its strategic plan for the years 2019-2021, the NSGC has identified diversity and inclusion as one of its four areas of strategic focus. Specific plans include developing mechanisms to highlight genetic counseling as a career in hard-to-reach communities by the end of the year. Erica Ramos, who is the immediate past president of the NSGC and serves as the board liaison to the task force, says she is optimistic that the numbers of underrepresented minorities in the field will improve.
"People in the profession have realized that we have blinders on," she says. "But as an organization, the NSGC has been asking questions about how we can improve on diversity and be supportive of existing minority genetic counselors. We had 100 people apply to serve on the task force."
A number of genetic counselors from diverse backgrounds have also come together to form their own support and advocacy networks. In November 2018, the Minority Genetic Professionals Network was formed to provide a forum for genetic counselors from diverse backgrounds to connect with one another.
Erika Stallings is an attorney and freelance writer based in New York City. Her work focuses on health care disparities, with a focus on breast cancer and genetics. Find her on Twitter: @quidditch424.