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Center Brings Cancer Screenings to At-Risk Populations
Some people may be at an increased risk for developing cancer, but they don’t know it. Around 10% to 15% of cancers are the result of an inherited cancer syndrome. Well-known examples of inherited risks include carrying a genetic mutation in either the BRCA1 or BRCA2 genes. These types of mutations are associated with a higher lifetime risk for some cancers.
For those with a family history of cancer, genetic testing and counseling can help guide decisions regarding screening and management. Despite carrying a disproportionate burden of elevated risk for some cancers, African Americans and Latinos are less likely to undergo testing compared to white adults. Barriers include a lack of awareness of genetic testing and counseling, inadequate health coverage or any coverage at all, limited availability of genetic services that are culturally and linguistically appropriate and distrust rooted in historical misuse of data, among others.
By intervening before a cancer diagnosis with genetic testing and counseling, researchers may be able to address health disparities among at-risk populations. That’s the idea behind a collaborative effort led by Andrew Godwin, PhD, deputy director of The University of Kansas Cancer Center, Hope Krebill, executive director of the Masonic Cancer Alliance, and Mariana Ramirez, director of the University of Kansas Medical Center’s JUNTOS Center for Advancing Latino Health.
A Different Approach
Several studies have explored the challenges some groups face when it comes to genetic testing. However, according to Dr. Godwin, few have initiated solutions that will significantly boost uptake. Candid conversations with members of various community advisory boards pushed him and his colleagues to approach the challenges a little differently.
“We learned that some research participants were frustrated that we were taking and not giving,” Dr. Godwin says. “That is why I sought to assemble a group of community-minded people within KU Medical Center and our region. Our goal was to find a solution that would truly impact those in need.”
We were surprised to find that about 17% of the people who completed the program required follow-up screening or care. That’s higher than the national average and underscores the importance of the work we are doing. Andrew Godwin, PhD
Deputy director of KU Cancer Center
In 2020, Dr. Godwin launched the Center for Genetic Services and Health Equity (CGSHE) using philanthropic support from his Kansas Institute for Precision Medicine. The team’s goal is to provide free genetic counseling (via telehealth by board-certified counselors) and genetic testing, as well as referrals to cancer screening programs in Kansas and Missouri for those at higher risk for inherited cancers and who would otherwise not have access to these services. They partner with KC CARE Health Center, a Federally Qualified Health Center that provides care to everyone, including the underserved, uninsured and underinsured. KC CARE is the medical home to those receiving genetic counseling and testing at no cost through the CGSHE. Of the people participating, more than half are uninsured. About 66% are Latino and 15% are Black.
“We were surprised to find that about 17% of the people who completed the program required follow-up screening or care,” Dr. Godwin says. “That’s higher than the national average and underscores the importance of the work we are doing.”
Educating the Community
Because a lack of awareness is a factor when it comes to inherited cancer risk, the team also focuses on education and outreach. Many of the team members are bilingual and live in the communities that CGSHE aims to serve. From November 2021 to October 2023, the team hosted/attended more than 250 events with more than 7,000 participants.
Since its founding, Dr. Godwin and his team have continued to grow their network of partners across Kansas and Missouri. More than anything, Dr. Godwin is grateful for his team members who are doing the day-to-day work.
“I’m very proud of what our community-based effort has done so far, and I look forward to seeing what more we can accomplish,” Dr. Godwin says.