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Increasing AIAN Research Engagement through A Culturally Adapted Ethics Training

Primary Investigators: Cynthia Pearson (University of Washington) and Celia B. Fisher (Fordham University). Supported by NICHD 1R01HD082181-01.

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Background

American Indian and Alaska Natives (AIAN) face glaring health disparities, and AIAN-specific research lags behind other racial and ethnic data in addressing AIAN health concerns. Engaging AIAN community members in the research process can reduce research mistrust, increase scientific rigor, and expose more AIAN to research both as participants and potentially as future scholars. A significant barrier to community-engaged research (CEnR), however, is the absence of culturally relevant human subject's research ethics education for community partners. This early stage investigator initiated (PA-13-302) proposal addresses the urgent need to increase participation of AIAN in the design, implementation, and dissemination of federally funded research conducted in Indian Country and affecting the health and welfare of their communities. By doing so, this study addresses a primary goal of the National Institutes of Health (NIH) "to strengthen our nation's research capacity, broaden our research base, and inspire a passion for science in current and future generations of researchers."

The overarching goal is to strengthen research capacity and increase AIAN community involvement in NIH-funded research by creating a culturally relevant training module for the Collaborative IRB Training Initiative (CITI) that is applicable, accessible and passable for AIAN while enhancing its educational value. The "student in research" module was selected for adaptation because of its comprehensive coverage of a full range of human subject's protections and language level. Using a CEnR approach, this innovative study will increase informed AIAN community involvement in research by creating culturally appropriate training that applies Belmont principles to fundamental human subjects protections. Aim 1 seeks to identify language, and research examples in the current CITI "student in research" training module that requires cultural adaptation for AIAN community researchers. Aim 1 will be achieved through an iterative process that draws on the expertise from a national expert panel of AIAN community leaders, researchers and ethicists with expertise in AIAN research. Aim 2 seeks to develop and psychometrically validate a culturally adapted and AIAIN population accessible version of the module designed to increase AIAN community members' involvement in research through increased research ethics knowledge, research efficacy, and research trust. Aim 2 will be achieved through preliminary beta testing and a subsequent large-scale two-arm randomized controlled trial among a nationally representative sample of AIAN potential research partners. Aim 3 of the project is to translate the findings into policy and practice guidelines. Ai 3 will be achieved by disseminating the training for immediate use through the CITI, National Congress of American Indians, and American Indian Higher Education Consortium. The significance of this proposal lies in the potential to advance science in ethics training for NIH-funded research across Indian Country. It is geared toward developing research capacity serving AIAN living across the U.S., a group at risk for expanding health disparities.