This story has been updated to correct the racial/ethnic breakdown of the Omaha public schools.
NEW YORK — The lack of diversity within the genetics and genomics workforce not only means that it does not reflect the population it serves but could also undermine patient care, according to a roundtable discussion organized by the National Academies of Sciences, Engineering, and Medicine.
This lack of diversity is particularly stark among genetic counselors where 90 percent of the workforce is white. Having the workforce better reflect the population it aims to serve — the most recent US Census has found that an increasing proportion of the US population identifies as belonging to a minority group — will also lead to better patient access and care.
"Having a diverse workforce is not just a nice thing to do," Sylvia Mann, the genomics section supervisor at the Hawaii State Department of Health, said during the roundtable presentations. "There is evidence that having a diverse workforce and student body is really supportive of services to underserved communities."
But there are a number of barriers to increased diversity, including a lack of exposure to the field, few role models, and a lack of support, according to the NASEM roundtable held this week. There are, though, ways to address some of those issues, such as through pathway programs, mentorship, and better reimbursement and pay for genetics professionals.
"Representation matters, and we have to invest in changing the professional profile of those involved in the genomics workforce," Altovise Ewing, a senior science leader at Genentech, added during the roundtable.
The past year has led to an increased focus on issues of diversity, equity, inclusion, and justice across society following the death of George Floyd and subsequent protests. This has prompted organizations like the American Association for the Advancement of Science to look into how to make both itself and the sciences more diverse. Similarly, the US National Human Genome Research Institute recently announced an initiative to "adopt diversity as an ethos," especially in light of the field's past ties to eugenics.
However, the field has also had to grapple with current signs of overt racism, including incidents that led to the resignation of the outgoing president of the American College of Medical Genetics and Genomics and the editor-in-chief of the Journal of the American Medical Association.
The lack of diversity also has effects on patients, according to Ewing, limiting the reach of the benefits gained from genetics and genomics.
Because the workforce is predominately white, most genetic and genomic research has focused on a white, European-ancestry population and on research questions of concern to that population. Recent studies, for instance, have estimated that nearly 80 percent of individuals in genome-wide association studies have been of European ancestry. Such studies, when brought into the clinic, lead to unequal treatment of patients because less is then known about disease-associated variants that may be more common among other ancestry populations, which then affects professional and practice guidelines.
"This translates into inequities in opportunities for patients and families to engage in precision care, preventative screening, and innovative research options that will potentially stop diseases such as cancer in its tracks," Ewing said.
A more diverse workforce may identify research questions of interest and importance to different communities as well as lead to better communication with a diverse patient population through shared experiences and culture.
There are many known barriers to healthcare careers, Mann noted, including, for instance, a lack of exposure to fields like genetic counseling, a lack of role models or poor advising, and financial constraints, among others. Admission requirements like shadowing a genetic counselor or great reliance on MCAT scores can also be a hindrance.
There are, though, ongoing programs aimed at addressing some of these barriers.
Omar Abdul-Rahman, the director of genetic medicine at the Munroe-Meyer Institute at the University of Nebraska Medical Center, for instance, is reaching out to high school students with the UNMC High School Alliance program.
Through the program, about 50 students a year spend about two hours a day on campus where they take classes taught by faculty and also spend about one afternoon a week learning about different career paths. The Omaha public schools are about 36 percent Hispanic or Latino, 25 percent Black, 25 percent white, and 6.6 percent Asian, according to Abdul-Rahman.
"We really need to think about getting that early exposure and going as early as possible because the effects of structural racism really start very, very early in the elementary and high school years," Abdul-Rahman said.
At the same time, Barbara Harrison, a genetic counselor at Howard University College of Medicine, added that pipeline programs linking, for instance, graduate programs in genetic counseling to historically Black colleges and universities or other undergraduate institutions serving underrepresented groups could help reach qualified applicants. She noted that though HBCUs represent 3 percent of degree-granting institutions in the US, in 2013 they represented 17 percent of the colleges that supplied the most African American applicants to medical school.
Mentorship programs, Harrison noted, can also help interested college students who are not as familiar with the academic system to navigate the application process and its associated costs.
She added that the Genetics Opportunity Learning Development & Empowerment Network is focused on increasing the number of Black genetic counselors by both raising awareness about the field and mentoring prospective applicants.
Hawaii's Mann added that programs should also try to ensure they are a safe space for minority students once they do arrive. "We get horrific stories about training programs and experiences in clinical rotations, and things like that are just bad for our minority students," she said.
Part of creating a safe space is to have institutional policies on diversity, equity, inclusion, and justice. This, Mann noted, is more than having an online training module about diversity but involves committing to open communication so students can discuss problems as well as having clear and transparent responses to any issues.
Having diverse faculty also helps to create a safe space, she added, noting that these faculty members can then be the next training program leaders. The Western States Regional Genetics Network, for which Mann serves as the project director, has a Minority Genetic Professionals Network for students, trainees, and professionals. In addition to its mentoring program, it also offers leadership training.
Overall, according to the American Society for Human Genetics' Chazeman Jackson, a roundtable moderator, there is a "societal imperative to bring diversity into genetics and genomics services, [and] the workforce must reflect the world we aim to serve and empower patients with agency. And if that doesn't happen, then we reduce our reach, we stifle our advancements, and we impede inclusion."