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Genetic consultants in demand, but diversity brands: shots



Altovise Ewing, a PhD in human genetics and counseling, now works as a genetic counselor and researcher at 23andMe, one of the largest genetic testing companies direct to consumer, based in Mountain View, Calif.

Karen Santos for NPR


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Karen Santos for NPR

Altovise Ewing was 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 that working in a laboratory was not for her ̵

1; not enough social interaction.

When a genetic counselor came to her class as a guest lecturer, Ewing remembered her as a "light bulb moment." Genetic counseling, she realized, would allow her to be immersed in science, but also interact with patients. And maybe, she thought, she would also be able to help meet racial health differences.

It was 15 years ago. Ewing, who continued to achieve a PhD in genetics and genetic genetics / genetic counseling from Howard University, is now working as a 23andMe Genetic Advisor, one of the largest genetic testing companies direct to consumers. As a black woman, Ewing is also a rarity in her profession.

Genetic Advisers work with patients to determine when genetic testing is appropriate, interpret test results, and advise patients in ways that hereditary diseases can affect them or their families. According to data from the US Department of Labor's Bureau of Labor Statistics, genetic counselors are expected to grow by 29% between 2016 and 2026, compared to a 7% average growth rate for all occupations.

23andMe's Ewing says the lack of ethnic diversity among genetic counselors in the United States reduces some people's willingness to participate in clinical trials, "because they are unable to connect with the counselor or researcher involved in the research initiative. . "

Karen Santos for NPR


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Karen Santos for NPR

Despite the rapid growth of the field, the number of African Americans, Hispanics, and Indians working as genetic counselors has continued to be low.

As the role of genetics in the medicine expands, diversity among providers is crucial, people working in the field say. "It is well documented that people want medical services from people who look like them, and genetic counseling is not an exception," said Barbara Harrison, 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 from the first place.

"I can't tell you how many times I've seen 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. "That's what keeps me passionate about being a genetic counselor."

Ethnic and gender diversity among providers can also increase the depth and extent of information patients are willing to share in the clinical environment – information that is important to their health.

"In my opinion," says Erica Price, who just received her master's degree in genetic counseling from Arcadia University, "no one fights for the black community like other black people I encounter many other African Americans who do not know what genetic counseling is. But when they find that I am a genetic counselor, they will give me all their family history. "

Bryana Rivers, an African American, recently graduated from the University of Cincinnati Genetic Counseling Program, and wrote last year's experience with a Black mother whose two children had undergone extensive genetic testing to try to find the cause of their developmental delays.

Having a solid diagnosis, Rivers' mother explained, could help children access the resources they needed at school. The mother wanted to know if the genetic variant that had been identified in her children – one whose geneticists had decided was a "variant of unknown meaning" – had been observed in other black families.

That question, which she had not brought up in previous discussions with non-African American health professionals, led to a broader, honest discussion of what these unknown variants mean and do not mean, and why they are more common among members of understudied minorities .

"I can't stress enough how important it is for patients to feel comfortable, to feel heard, and to know that they are not ignored or discriminated against by their suppliers based on the color of their skin," wrote Rivers in his blog post. [19659007] "I would not suggest that a non-black genetic counselor would not have listened to her, but there are factors beyond what we do and say that may affect our patients. Just the fact that she managed to lower the guar d bit because we share the same racial background as her who speaks volumes. "

In an interview, Rivers also told a recent session conducted by a white female genetic counselor that Rivers shadowed that day, the patient, who was a black woman, addressed all their responses to Rivers, although Rivers' official role was merely to follow The agreement.

"I feel a responsibility as a black supplier to watch out for my black patients and make sure they get the appropriate care," Rivers says. "Not everyone is willing to go an extra mile and they can be more dismissive of the concerns of black patients and may not hear them. "

Ewing, who also researches, adds that the lack of diversity among genetic counselors has had a negative Impact on Research

"The lack of diversity affects the willingness of minorities to conduct clinical studies because they are unable to connect with the counselor or researcher who is involved in the research initiative, "she explains. "We are now in a time of precision and personal medicine, and we need people who are comfortable talking about genetic and genomic information with people from all walks of life, so that we reach 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-Spanish white genetic counselors accounted for 91 to 94.2% of NSGC membership.

In 2019, 90% of 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 mention a lack of awareness among under-represented minorities of genetic counseling as a profession as an important barrier to diversity in the field. Rivers says she had little exposure to genetic counseling as a future career path while she enrolled as a biology major at the University of Maryland.

"My university stressed medical school, nursing school or a doctorate in biological sciences," Elver remembers. "I only had a four-year genetic counselor professor."

Samiento joins it. "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 people in the training programs, and it requires 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 has not been enough time and exposure for people to see [the field] as they look at other medical professions, "Price says. "People have asked me why I would follow genetic counseling when I could be a medical assistant or nurse or go to medical school."

After Price had accepted the graduate school, one of her professors questioned her career path. "She told me: & # 39; You're a black woman in the sciences. We could have gotten you a doctoral program or something that you make more money."

As part of their strategic plan for In the years 2019-2021, NSGC has identified diversity and inclusion as one of the four areas with strategic focus. Specific plans include the development of mechanisms to highlight genetic counseling as a career in hard-to-reach communities by the end of the year. Erica Ramos, the closest former president of the NSGC and serving as the chair of the workforce, says she is optimistic that the number of underrepresented minorities in the field will improve.

"People in the profession have realized that we've been lapping," she says. "But as an organization, the NSGC has asked how we can improve diversity and be supportive of existing minority genetic counselors. We had 100 people seeking to work in the working group. "

A number of genetic counselors from diverse backgrounds have also come together to form their own support and recognition networks. In November 2018, Minority Genetic Professionals Network was formed to provide a forum For Genetic Counselors with Different Backgrounds to Connect With Each Other

Erika Stallings is a lawyer and freelance writer based in New York City, whose work focuses on inequalities in health care, focusing on breast cancer and genetics. Twitter: @ quidditch424 .


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