African cancer genome registry seeks to understand disparities in prostate, breast cancer risk and outcomes

"Please, please do it (cancer screening), if not for yourself, then for the next generation. We need to see the day when we end cancer."

Those are the impassioned words of Charinus Johnson-Davis, who was diagnosed with breast cancer a dozen years ago but is now cancer-free after a double-mastectomy and 28 rounds of chemotherapy plus radiation. She is on a mission to help address cancer disparities affecting Black women and men, and is one of the first to enroll in the African Cancer Genome Registry, a new study at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine. Researchers there are working with national and international collaborators to better understand why Black men and women are at higher risk of developing and dying from aggressive prostate or breast cancer.

The study is actively recruiting ethnically diverse men and women of African ancestry who were diagnosed with prostate or breast cancer to build a database from which researchers hope to identify genetic, socioeconomic and lifestyle factors that may influence cancer risk among these groups.

Researchers are seeking about 200 people from the South Florida region and another 1,800 from international study sites, including the Caribbean countries of the Bahamas, Barbados, Haiti, Jamaica, and Trinidad and Tobago. Additionally, they hope to recruit cases from the African nations of Benin, Burkina Faso, Kenya and Namibia.

Participants agree to provide saliva DNA or blood samples for genetic testing, tissue samples from a surgery or procedure, and complete a questionnaire covering behavioral, nutritional, medical, family cancer history and health-related quality-of-life information. Researchers will review participants' medical records to cull data about tumor, staging, treatment and other relevant information.

Sophia George, PhD, Sylvester's associate director of diversity, equity and inclusion, serves as the study's co-principal investigator, along with Camille Ragin, PhD, from Fox Chase Cancer Center in Philadelphia. They and their respective cancer centers are collaborating with Pfizer's Institute of Translational Equitable Medicine and leveraging the resources of the African Caribbean Cancer Consortium (AC3), a multi-institutional, transcontinental network of scientists, oncologists and other health professionals focused on understanding cancer risk and outcomes among people of African ancestry. George and Ragin, who founded AC3, hold leadership positions with the consortium.

People of African ancestry disproportionately develop aggressive, high-grade cancers, particularly in breast, endometrial, ovarian and prostate tissue, and the underlying driving factors are not well understood."

Sophia George, PhD, Sylvester's associate director of diversity, equity and inclusion

Breast cancer is the most common cancer, excluding skin cancers, among all women in the U.S. and its rates are increasing among Black women, according to the American Cancer Society. Since 2019, it has been the leading cause of cancer death among Black women, outpacing lung cancer, and they tend to be diagnosed at later stages and have worse survival rates at all stages. Meanwhile, prostate cancer is the second-leading cause of cancer death for U.S. Black men, behind only lung cancer.

Similarly, breast and prostate cancer are leading causes of cancer death in the Caribbean and Africa, with mortality rates for prostate cancer in the Caribbean among the highest worldwide.

Johnson-Davis volunteered for the registry after seeing a flyer during a follow-up visit with her Sylvester oncologist.

"I'm doing this for my 10-year-old niece and the next generation of kids and young people who are going to come behind us," Johnson-Davis explained. "I'm hoping my story inspires others to get involved by sharing their stories. It's a great platform to promote awareness."

Willie Bell agrees. He chose to volunteer for the registry after being diagnosed with prostate cancer in 2021 and undergoing a radical prostatectomy at Sylvester. His once-elevated PSA is now below zero and he is grateful to be alive.

"Too many Black men are worried about the side effects from treatment, especially erectile dysfunction," Bell said. "They're worried about potency, no longer being a man. But I don't see it that way. I see it as being alive.

"You can't let your ego get in the way of getting screened and treated for prostate cancer," he continued.

George, who Legacy magazine recently selected as one of South Florida's Top Black Educators of 2023, hopes this study can recruit more "role models" like Johnson-Davis and Bell to help researchers find answers for higher rates of prostate and breast cancer mortality among people of African ancestry.

"We hope this registry helps us gain valuable insight into what triggers these diseases more often and more aggressively in African-descent populations," George explained. "Once we have that knowledge, we can then focus on educational and biomedical /clinical efforts aimed at prevention and earlier diagnosis through lifesaving screenings."

When asked what she would say to convince others to volunteer for this study, Johnson-Davis didn't hesitate: "Please, please do it, if not for yourself, then for the next generation. We need to see the day when we end cancer."