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.