Disparities exists in recruitment in clinical trials and biorepositories among minority groups, rural residents, and low-income individuals. The objective of this study to identify barriers and facilitators to awareness, understanding, and acceptance of clinical trials and biobanking among English- and Spanish-speaking safety-net patients and providers and African American (AA) and Hispanic social and church groups. We conducted 14 focus groups and 7 individual interviews January-May 2017 among English-speaking adults in urban and rural communities in Louisiana. In September 2018 we expanded the study to Hispanic adults. (This study is ongoing.) Sites included safety-net oncology and primary care clinics, social service agencies, Alzheimer support groups, and social and church groups. Themes were identified. The first study included 103 individuals: 78 patient and community participants and 25 providers; 24% lived in rural areas. Patients and community members' age ranged from 45-88; 85% were female, 78% AA. Participants were aware 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 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. AA participants indicated that a recruitment message needs to be “ALL people are needed for studies to improve treatments” rather than “AA have been under-represented 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. Community providers 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. AA and lower-income 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; however, community physicians lack appropriate information to give patients. Strategies to create understandable and actionable information that can be shared with community providers and the public are urgently needed.
Citation Format: Terry C. Davis, Connie Arnold, Glenn Mills, Lucio Miele. Biobanking and genomic research: Understanding and acceptance of individuals unrepresented in clinical trials [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr IA07.