Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

We conducted a scoping review of sweet beverages (SB) and cancer outcomes to ascertain SB's relationship with cancer by SB type and cancer type. We used the PRISMA Scoping Review Guidelines to review quantitative studies of SB and cancer. Eligible studies included articles reporting a quantitative association between SB intake and a cancer-related health outcome in humans, including adiposity-related vs. non-adiposity-related cancers. Studies included analyses not confounded by artificial sweeteners. SB was defined as beverages with added sugars, 100% fruit juices, or fruit drinks that were not 100% fruit juice. We used a data-charting form to extract study characteristics and results. A total of 38 were included. The sample consisted predominately of adults from European countries outside of the U.S. or predominately White samples in the U.S. Across all conceptualizations of SB, a greater proportion of studies examining carbonated drinks reported SB's relationship with poorer cancer outcomes, which was exacerbated in adiposity-related cancers. The composition of different types of SB (e.g. high fructose corn syrup, natural fructose) as they relate to cancer is important. Studies including more diverse populations that bear a disproportionate burden of both SB intake and cancer are needed.

Purpose/Objective(s): Roswell Park is the oldest comprehensive cancer center in the US, founded in 1868. Roswell is also situated within the largest confederacy of Native American Nations in the Northeast, the Haudenosaunee, People of the Longhouse, also known as the Iroquois. Holdings of Indigenous biospecimens collected and housed in Roswell's biorepository were reported back to Indigenous urban communities and the largest Haudenosaunee Nation in the region. The purpose of the presentation was to share and engage discussion on indigenizing biorepository collections, procedures, storage, and utilization for investigation as a means of cultural resistance. Materials/Methods: Two projects were conducted. The first reviewed feedback on clincial trial recruitment methods in urban indigenous communiteis related to biospecimen research (n=16, phase 1; n=20, phase 2) and a second study is under way investigating reservation-based and urban perspectives on biobanking storage, perceptions of genetic research, ethics, and policy (n=35 interviews; n=6 focus groups). Both studies utilized a qualitative framework to collect, analyze, and report experiences, perceptions on clinical research, recruitment, biospecimen donation, and investigation. Mulitple analysts were incorporated from interdisciplinary qualitative paradigms, training, cultural backgrounds, and experience to enhance rigor. Summary: Preliminary results included the process of creating trust through respectful partnerships, understanding the consenting process, respecting traditional views, the need for education on the field of genetics, being congnizant of environmental spaces, and benefit to family and future generations. Other conclusions focused on macro level recommendations for indigenizing cancer-based biorepository collections, procedures, storage, and utilization for investigation as a means of cultural resistance and honoring. Conclusions: Conversations included conceptualization of macro-level policy initiatives that have the ability to enlighten the process of “Western science” in creating new narratives for future generations and building meaningful biologic specimen research agendas towards culturally attuned prevention and personalized medicine. It is important that unique societies contribute to the science and crucial that science respects the sovereignty of Native Nations to contribute for the benefit of all generations. Citation Format: Rodney C. Haring, Elisa M. Rodriguez, Whitney Ann E. Henry. Indigenizing cancer biobanks as a form of cultural resistance [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 B124.

Background: It is documented that inequities in research participation by minority and underrepresented populations limits the progression of personalized medicine for cancer treatment for these groups. A lack of understanding essential information during the consent process and poor physician-patient communication have been noted as two overarching barriers to patients participating in translational, clinical and biospecimen research. To address these major patient barriers, we developed a plain language research literacy support (RLS) tool to improve the consent process and facilitate dialogue between physicians/research staff and patients. We describe the tool's iterative development process and testing of the developed culturally appropriate RLS tool. Methods: We tested the tool among: 1) patient participants ≥18 years of age, who were able to read and speak English from communities associated with five academic centers in the Midwest and Northeast United States; and 2) eligible recruiters who were employed at an academic center and actively recruiting patients into research. The development process for the RLS tool consisted of two phases: cognitive and beta testing. During cognitive testing, we solicited feedback from patient and recruiter participants about the content and format of the tool including low literacy language, pictures and recommendations for additional content. The tool consisted of concept cards to provide information to assist patients in making an informed decision about participating in research. During beta testing, a condensed version of the tool was tested to assess acceptability and change in knowledge about research participation. Results: Participants included 155 patients (52: cognitive testing phase; 103: beta testing phase) and 20 recruiter participants. Patient participants were mostly females (71%). Self-identified race of patients included: Whites (43%), African Americans (32%), Native Americans (20%), and other (6%). In addition, 23% of patient participants self-identified as Hispanic. During the cognitive testing phase, patient participants reported that the information was clearly laid out and the tool explained the different steps in the recruitment and enrollment process. Patient participants indicated they had learned new information related to randomization, standard of care, coded-information, and biobanking. Although some patient participants acknowledged the cards contained a great deal of information, most reported that the information was essential. Several participants suggested cards be tailored for the Native American population. Recruiters indicated that the cards provided useful information and would assist patients and research staff. During beta testing phase, 98% of participants agreed the information on the cards helped them understand clinical research. After reviewing the cards, 49% of patient participants reported that they would be very likely to participate in research and 32% reported being somewhat likely to participate in research. The majority (61%) of participants indicated that if invited to participate in a research study, they would prefer that the cards would be mailed to them in advance while 34% wanted to review the cards at their medical appointment. Half of the participants preferred accessing the cards on a computer if administered in a video format. Conclusion: The RLS tool was well received among patient and recruiter participants, making it a potentially valuable resource for enrollment of minority and underrepresented patients into health research. The next step will be to test the RLS tool for effectiveness in a randomized controlled trial. Citation Format: Erika E. de la Riva, Rodney Haring, Elisa M. Rodriguez, Evelyn Gonzalez, Mira Katz, Nikia Clark, Whitney Ann E. Henry, Rosa O. Ortiz, Barret J. Zimmermann, Marla L. Clayman, Deborah O. Erwin, Judith S. Kaur, Melissa A. Simon. Development and beta testing of a culturally appropriate research literacy support tool to increase research participation among minority and underrepresented populations. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A11.