Abstract 3010: Biobanking and genomic research: Understanding and acceptance of safety-net patients, primary care providers and minority groups
Authors: Terry Davis, Connie Arnold, Lucio Miele, Glenn Mills
Journal: Cancer Research (2018)

Abstract Background: Disparities exists in recruitment in clinical trials and biorepositories among minority groups, rural residents and individuals with low SES.Objective. Identify barriers and facilitators to awareness, understanding and acceptance of clinical trials and biobanking among safety-net patients and providers and support group participants and African American (AA) social and church groups. Methods: We conducted 14 focus groups and 7 individual interviews January - May 2017 in urban and rural communities in Louisiana. Sites included safety-net oncology and primary care clinics, social service agencies, social and faith based groups. Themes were identified. Results: 103 individuals participated: 78 clinic patient and community participants, 25 providers; 24% participants lived in rural areas. Patients and community members ranged in age from 45-88; 85% were female, 78% AA. Participants had an increasing awareness of clinical trials and personalized medicine due to ads on TV. Low income and minority patients were open to participating in genomic trials and biobanking even if it would not benefit them directly. Cancer patients and Alzheimer family caregivers were highly interested in clinical trials that might benefit them or their family. Community participants were less trusting of clinical trials than patients. All said information and recommendations about clinical trials would be most effective and actionable if it comes from a trusted physician. Terms such as clinical trials and biobanking were scary to some and not understood - medical studies and a bank to store blood and tissue were clearer. African American participants indicated that a recruitment message needs to be “ALL people are needed for studies to improve treatments” rather than “AA have been underrepresented and most treatments based on whites” which raises suspicion. Some participants were concerned with who would see data and if it would be a barrier to jobs or insurance - despite being told of protections in place for confidentiality. Rural and urban providers (n=25) were interested in being more involved in clinical trials. They lacked time to identify trials and explain them to patients. They wanted brief, plain language handouts with talking points and a card to give patients to call for more information. Transportation to academic centers is a barrier to patient participation in clinical trials. Very few patients, caregivers or providers had looked for clinical trials on the internet or social media. Conclusions: African American and white adults were interested in clinical trials but not clear how to learn about them. Most were willing to participate but had never been asked. Recommendation to participate in a clinical trial is most effective coming from a trusted physician. Methods for getting community providers and the public useful information needs to be created with target audiences. Citation Format: Terry Davis, Connie Arnold, Lucio Miele, Glenn Mills. Biobanking and genomic research: Understanding and acceptance of safety-net patients, primary care providers and minority groups [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2018; 2018 Apr 14-18; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2018;78(13 Suppl):Abstract nr 3010.