I am my Sister’s Keeper: A Community-Engaged Research Project to Explore Perceptions of Hereditary Cancer Risk Assessment among Black Women in the Mountain West

Cancer does not affect everyone equally. In the United States, Black women face a heavier burden of the disease, often being diagnosed at younger ages and with more aggressive forms of the illness than women of other backgrounds. While medical science has developed powerful tools to predict who might be at risk for hereditary cancers, these tools remain underused in many Black communities. One such tool is hereditary cancer risk assessment, a process where doctors look at a person's family health history to estimate their likelihood of developing cancer. This information can guide life-saving decisions about screening and prevention. However, for these assessments to work, people must first know they exist and feel comfortable discussing them with their doctors. The challenge often lies not in the technology itself, but in the gap between medical knowledge and the communities that need it most, a gap widened by historical mistrust and a lack of culturally relevant outreach.

To bridge this divide, a team of researchers from the University of Utah and local health organizations embarked on a project called "I am my Sister's Keeper." Their goal was not to test a new drug or a new machine, but to listen. They wanted to understand how Black women in the Mountain West region of the United States perceive cancer risk and the idea of genetic testing. The researchers worked closely with a Community Action Team, which included members of the Delta Sigma Theta Sorority, local churches, and Black medical professionals. This partnership ensured the study was shaped by the community it aimed to serve. Between September 2023 and April 2024, the team held five small group discussions with twenty-four Black women in Salt Lake City and Ogden, Utah. Before these conversations, the women filled out a brief survey, and then they gathered to talk openly about their experiences, their beliefs, and what they knew about cancer prevention.

The conversations revealed a striking disconnect. Nearly half of the women surveyed believed they were at high risk for cancer, yet the vast majority had never spoken to a medical provider about a hereditary cancer risk assessment. When asked about these assessments, many participants admitted they had never heard of them. One woman noted that while she had heard of sickle cell testing from her college days, the idea of testing for cancer genes was entirely new to her. Another expressed excitement at the prospect, saying she would jump on the opportunity if she knew it was available. The study found that the primary barrier was not a refusal to learn, but a simple lack of exposure. The women did not know these services existed, and they had not been told about them by their doctors.

Beyond the lack of information, the discussions highlighted deep-seated cultural and emotional factors that shape how these women approach health. Faith emerged as a central theme. For many participants, their relationship with God was a source of strength and a way to cope with the fear of cancer. Some viewed faith as a protective shield, believing that prayer and medical treatment could work together. However, for others, a strong sense of faith led to a feeling of fatalism, where they believed that if cancer was meant to happen, it would happen regardless of screening. This belief sometimes made preventive measures feel unnecessary. The researchers also heard how vital social support is within these communities. Women described relying on their churches, sororities, and families for encouragement. They saw these groups as places where they could find the emotional backing needed to face difficult health decisions, yet they also noted that they often lacked personal networks to discuss specific medical risks with.

The women also spoke candidly about their experiences with the healthcare system, describing encounters that felt dismissive or racially biased. Some felt that doctors treated all patients the same, ignoring the unique risks and histories of Black women. Others felt excluded from important medical research or believed that the system was not designed with their well-being in mind. These negative experiences created a barrier of mistrust, making it harder for women to engage with new health tools like genetic testing. They expressed a desire for doctors who understood their specific backgrounds and for a system that treated them with the same care and attention given to others. The study suggested that without addressing these feelings of exclusion, simply offering more information would not be enough to change behavior.

The findings point to a clear path forward. The researchers concluded that the organizations already trusted by these communities, such as Black sororities and local churches, are perfectly positioned to share information about cancer risk. These groups can act as bridges, delivering health messages in a way that feels safe and familiar. The study suggests that if these trusted leaders are equipped with the right information, they can help women understand their risks and encourage them to seek medical advice. The researchers did not claim to have solved the problem of cancer disparities, but they identified a crucial missing piece: the need for community-led education that respects faith, acknowledges past hurts, and empowers women to take control of their health. By listening to the voices of Black women in the Mountain West, the study offers a roadmap for building a future where cancer prevention is accessible to everyone.