Lost in Translation

As of the 2020 U.S. Census, more than 1 million Latinos live in Georgia, making them one of the fastest-growing groups in the nation. But nearly half of this population lives in poverty or low-income conditions and they have one of the highest rates (33%) of uninsured individuals, reducing their access to health services and preventive care in the state.

Yue Guan, PhD, research assistant professor of behavioral, social, and health education sciences, focuses her research on promoting population health and eliminating health inequity by translating evidence-based genomic-informed programs and policies into practice.

"It is well known among ethnic racial minorities such as Latinos that consistent and significant disparities occur in service access, both in specialty clinical areas and public health settings," says Guan.

Through her research, she has deduced that Latinos are under-represented in cancer genomic databases and are more likely to receive generic genetic test results with no clear course of action.

The study team and facilitators pose before the community discussion in June 2023. (Left to Right: Yue Guan, Dayanna Ramirez, Jackie Bonilla, Estefany Rivera Sanchez, Jazmin Huerta, and Denise Martinez)

Expanding hereditary cancer screenings in Georgia

Cancer genetic risk screening is particularly beneficial for Latinas at higher risk for hereditary breast cancer. They are often diagnosed with breast cancer at a younger age than non-Hispanic whites and with tumor types (such as triple-negative) linked to hereditary genetic mutations. However, Spanish-speaking Latinas are half as likely as white individuals to discuss genetic counseling or testing with a health care provider.

Georgia is one of the few states that has a population-based screening program for hereditary breast and ovarian cancer. The Georgia Department of Public Health runs the Georgia Center for Oncology Research and Education (Georgia CORE)'s family history screening program, which offers cancer genetic screening in public health clinics statewide. The program, the Georgia Genetics Program, focuses on family history screenings for BRCA-associated cancers (like breast and ovarian cancer) among largely uninsured and low-income individuals. Since 2012, over 30,000 women in Georgia have completed family history assessments for BRCA-associated cancers through Georgia CORE.

"All the infrastructure is there for a potential population reach, but we found that the reach of this screening program remains very low in general, and particularly low among Latino communities," says Guan.

Her program evaluation showed that 9,412 adult Latinas in Georgia completed cancer genetic family history screening from 2013-2022 through Georgia CORE and reached Latinas in 14 of 18 public health districts across the state. Recently, the department added a Spanish-language line and a contract with a genetic testing company that offers genetic counseling services in Spanish to help its reach.

Jackie Bonilla 23PH, Dayanna Ramirez 23PH, and Denise Martinez prepare to register participants for the community discussion in June 2023.

Engaging with the Latino community beyond surveys

Last year, Guan launched the Latino Community Engagement Project to promote genetic screening for hereditary cancers, specifically breast and ovarian, among Latino communities in Georgia. The research team piloted the initiative in Gwinnett County, where, according to the 2020 U.S. Census, 23% of nearly a million residents identify as Hispanic or Latino.

The Latino Community Engagement Project, funded by a 2022 Rollins Dean’s Pilot Innovation Award, aims to improve community engagement through deliberative democracy—smaller, more personal group discussions to address the complex nuances involved in genetic testing and hereditary cancer.

In collaboration with Georgia CORE, the Gwinnett County Public Health Department, the Nett (Nations Experiencing Transformation Together) Church, Guan, and student researchers Denise Martinez and Dayanna Ramirez 23PH, organized a Spanish community deliberation on hereditary breast and ovarian cancer. The research team recruited 33 Latino community members from diverse backgrounds to discuss potential initiatives and hear their opinions on how they may affect their community for a one-day event.

"When we think about public health promotion, we tend to only focus on the positives,” says Guan. “From the beginning, we want to make sure the health officials can understand the potential pros and cons of targeting Latino communities for hereditary breast cancer and ovarian cancer screening. We want to know both sides of the issue."

Guan and her team considered basic demographic points such as sex, age, education level, and employment status. It was important to find subjects who had previously participated in civic engagement or volunteering to demonstrate their involvement in the community. "We want to encourage them to think about what would be a pro for their community and what would be a potential con," says Guan.

During the Spanish-speaking one-day June 2023 event, the 33 participants reviewed information on hereditary cancer screenings, deliberated with their peers, and voted on the question related to targeted screening among their community.

The participants, 31 women and two men, heard more about the risks of hereditary cancer, the importance of understanding their ancestry better than what databases currently show, and whether Georgia should focus on the Latino population when rolling out its hereditary breast and ovarian genetic counseling program. A workbook guided participants through their discussion with facilitators, including what factors to consider before pursuing available genetic screenings and further discussing the pros and cons.

"It's important to look at genetics through a public health lens because it is unfortunately one of the things that can also contribute to health disparities and especially in cancer outcomes,” says Ramirez, who served as a researcher and bilingual facilitator on the project. “It's vital to help people understand the pros and cons and give them informed consent."

For example, a pro would include individuals who have a mutation benefiting from more advanced prevention treatment options. However, those without insurance may struggle to access necessary follow-up care despite evidence-based recommendations, a con.

"We were willing to hear whatever they were able and willing to share,” says Martinez, who also worked as one of the bilingual facilitators. “The participants went above and beyond in sharing their true sentiments and sharing what their opinions were."

Participants sharing the conclusions of their small groups with the larger group for discussion during the June community event.

Removing language as a barrier

Conducting the June event and whole discussion in Spanish created a more collaborative learning experience for the researchers and the participants. The team went through several revisions of the event materials to have the proper translations so that they would connect with the community. "We made it more like through the lens of a community discussion, and I think that's part of the reason why people also felt very welcomed and excited to come back," said Ramirez.

During the event discussion, the researchers and bilingual interpreters facilitated a discussion with the participants about using more effective and nuanced Spanish words to describe the problem, genetic screenings, and relevant information for a future public health initiative. The discussion created a safe space to discuss preferred identification terms, like Latino, Latinx, or Hispanic, and build trust.

In another example, the terms, "pecho" and "mama" are both used to describe breasts in Spanish. Many of the participants picked “mama” to prioritize modesty and because it's used more widely. But, Guan decided to use the more gender-inclusive “pecho” moving forward in her research to spread the message that breast cancer can also affect men.

The Nett Church, a community partner in Gwinnett County, hosted the one-day June event. Executive Pastor Nora Colmenares took the lead in promoting the event through social media to reach more potential participants in the community as she saw the benefit of Guan’s research project. As a Latina woman, she understands the challenges the Latino community faces because scarce health resources and services are often tied to immigration status.

The church has hosted health fairs, health screenings, and birth control workshops and soon plans to book a mobile mammogram truck. Colmenares was impressed with attendance and engagement at the event since local community members can be apprehensive. "Everyone was sharing their thoughts, and some had me in stitches laughing," she says.

But in one sobering instance, Colmenares heard a participant comment: "Not to get out of learning, but why would I want to learn if I have the gene? If I do, there's nothing I can do about it since I'm uninsured."

"It broke my heart but also raised a very important issue many Latino women face, whether documented or not,” says Colmenares. “Many don't have insurance, or if they do, it's not good enough."

Guan experienced another memorable moment, this one more upbeat. “During an event break, a participant approached me and said, 'Dr. Guan, I've lived in this community for 20 years, and this is the first time a health event was done completely in Spanish. If you want to do any projects in the future, you have our support.' I still remember that sentence. That's so powerful."

Recently, Guan received National Cancer Institute funding that "promises to have a transformative impact on public health capacities to improve cancer screening and linkage to follow-up services," says Don Operario, PhD, chair of the Department of Behavioral, Social, and Health Education Sciences.

"Dr. Guan's research is guided by a fundamental vision to reduce long-standing inequities in cancer prevention, diagnosis, and treatment," adds Operario. "At a scientific level, this new grant is enormously complex. It addresses multiple intersectional levels of analyses—policy, community, individual, biological—that determine population-level cancer inequities."

Guan's team is currently analyzing data to identify qualitative insights into the pros and cons of a potential public health initiative for genetic screening in the Latino community, following the June event discussion. They must better understand these factors before moving forward with a larger Latino community engagement initiative statewide. Developing improved strategies is critical to building community engagement in order to address issues ranging from stigma to health care costs.

"Our one-year pilot project is just one small step, but I believe it's a seed we've planted,” says Guan. “We feel motivated to continue this research and make a positive impact.”

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