Enhancing engagement in biobanking research among Black women with endometrial cancer

BACKGROUND: Biobanking is crucial to understanding molecular determinants of the endometrial cancer (EC) disparity facing Black individuals, yet this population is underrepresented in translational research. Effective return of value (ROV) practices can facilitate research participation. Leveraging The Social Interventions for Support during Treatment for Endometrial Cancer and Recurrence (SISTER) Study, we aimed to identify priority ROV elements for optimizing biobank participation. METHODS: This community-engaged mixed-methods study included a survey and focus groups. We recruited Black EC survivors, including a subset previously enrolled in The SISTER Study. The survey asked participants to prioritize ROV items and focus groups were designed to elicit rationale for survey results, perceived benefits and risks of research participation and novel ROV items. Descriptive and inferential statistics and directed thematic content analysis were completed. Recommendations for research conduct were co-developed with a community advisory council. RESULTS: We recruited 56 Black EC survivors, including 38 SISTER study completers. In the survey (n = 50), returning results on genetics and lifestyle influencing disease risk were highest rated, while monetary compensation was lower. Focus group (n = 13) themes confirmed participants' interest in return-of-results, linked to trust and willingness to participate in biobanking. Three novel ROV items emerged, reflecting participants' motivation for EC knowledge and commitment to family and community health. Fourteen study recommendations were developed. CONCLUSION: These community-validated recommendations underscore the role of return-of-results, transparency, and social connection in engaging Black women with EC in translational research and can be adapted to guide study designs in other underrepresented groups and conditions.