Development of partnerships: A project to ascertain Alaska Native people's views on specimen banking

Purpose: Biological samples have been used in research studies in Alaska for more than 60 years. Unused portions of research samples and clinical samples from 1948 to present are currently stored in a specimen bank called the Alaska Area Specimen Bank (AASB). The AASB has advanced the understanding of Alaska Native people's health, however, important ethical and cultural considerations arise with the use of stored Alaska Native specimens for research. Methods: Using a community-based participatory research (CBPR) approach, the research process and discussion guide were developed in tandem with a tribal, state and federal workgroup. Following pilot testing, tribal health organizations were approached to partner and guide the study within their region. Village based community consultants were hired to assist in study recruitment. Twenty-nine focus groups were conducted in fourteen locations with 178 participants using a structured moderator guide aimed at ascertaining views regarding research using specimens and biobanking. Atlas.ti software was used to compile the range of views across all participants then between leaders and community members. Results: Focus groups reveal two broad categories of participant responses: research process and context with four broad themes of historical experiences, research potential, control and researcher expectations. Findings were summarized into newsletter form and presented to partners for comment. Conclusions: Results were shared with research development partners as well as with members of the communities where the data was gathered. Findings may influence the policies of the AASB and provide insight to other biobanks with specimens from Alaska Native people.