Project Deep Dive

Summary:

Genomic sequencing data predominantly comes from white, socio-economically advantaged populations, and those with common cancer types. To improve research and care for racial/ethnic minorities and other underrepresented populations, it is crucial to understand why people choose or decline to participate in cancer genomic sequencing research. However, little is known about decliners from underrepresented racial/ethnic groups and those with rare cancers. Researchers from four PE-CGS Network Research Centers—UNM/TGen, COPECC, WU-PE-CGS, and Count Me In—will examine American Indian, Hispanic/Latino, and African American cancer patients, and patients with rare cancers (cholangiocarcinoma and rare aggressive sarcomas) to identify the reasons behind declining participation and develop tailored ethical responses to improve participant engagement protocols and equity in cancer research.

Researchers will gather screening data on recruitment details, demographics, and cancer types from decliners in each target population. They will collect additional qualitative/survey data from a subset of decliners to understand their perceived reasons for declining. Alongside data collection, researchers will develop a scoping review of existing literature about those who decline genomic research. Finally, the team will use these findings to develop a guidance document outlining reasons for declining and propose ethical strategies to address each concern. These strategies will be specific to meet the needs of including underrepresented populations in cancer genomic sequencing research.

Understanding why underrepresented populations decline to participate in cancer genomic sequencing research will ensure inclusive and representative research. The study aims to reduce decliner rates and boost participation from underrepresented groups by developing ethical responses and strategies to address their reasons for declining participation. Ultimately, this will lead to more comprehensive and equitable cancer research, potentially improving outcomes for all individuals affected by cancer.

Progress to date (as of May 2024):

The project team is developing a study protocol for a scoping review in the summer of 2024. The four participating research centers are currently collecting and comparing eligibility data on people who decline to participate in genomic research, to determine what data components are acceptable for use according to the Institutional Review Board (IRB) guidelines at each site. Survey questions have been made consistent across the sites while accommodating individual processes. The research centers are at various stages of the review process of their research plans with the IRB.