scholarly journals Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine

2020 ◽  
Author(s):  
Dana M Carroll ◽  
Carol Hernandez ◽  
Greg Braaten ◽  
Ellen Meier ◽  
Pamala Jacobson ◽  
...  

Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.

2017 ◽  
Vol 45 (6) ◽  
pp. 781-809 ◽  
Author(s):  
Carolyn M. Tucker ◽  
Jaime L. Williams ◽  
Julia Roncoroni ◽  
Martin Heesacker

Significant health disparities continue to plague many groups of people who have been systematically oppressed and largely unrepresented in health research. Community-based participatory research (CBPR) is a collaborative research approach that has been shown to be effective in addressing health disparities; a community–university partnership approach can be used to conduct this research. Counseling psychologists are well suited to establish and lead CBPR partnerships, yet there is a paucity of research to guide them in utilizing effective leadership approaches when conducting CBPR for reducing health disparities. Therefore, the aims of the present study were to (a) review existing leadership models applicable to conducting CBPR; (b) identify guiding principles of socially just leadership that emerged from the aforementioned review; (c) offer an example of how the guiding principles were used in a community–university partnership, highlighting challenges, solutions, and lessons learned; and (d) discuss the benefits of socially just leadership for counseling psychologists.


2014 ◽  
Vol 29 (4) ◽  
pp. 318-334 ◽  
Author(s):  
Valerie Bryan ◽  
Willette Brye ◽  
Kenneth Hudson ◽  
Leevones Dubose ◽  
Shantisha Hansberry ◽  
...  

2018 ◽  
Vol 30 (2) ◽  
pp. 173-186 ◽  
Author(s):  
Bonnie Jerome-D’Emilia ◽  
Francine C. Gachupin ◽  
Patricia D. Suplee

Introduction: The purpose of this systematic review was to synthesize the current knowledge of factors that enable or impede American Indian and Alaska Native (AI/AN) women from accessing breast cancer screening. Methodology: A systematic search of MEDLINE and CINAHL databases identified relevant research studies published from 2007 to 2017. Results: Consistent with other low-income populations, socioeconomic factors were related to lower rates of screening in AI/AN women. However, some factors, such as reliance on the Indian Health Service, cultural issues, and traditionality were unique to this population. Discussion: AI/AN women appear to face many of the difficulties that other low-income minority women face in accessing preventive care; however, they may face unique challenges and circumstances in accessing care. Efforts to work with tribes in the development of interventions framed by community-based participatory research are needed to tackle the disparities in the AI/AN community.


2011 ◽  
Vol 22 (1) ◽  
pp. 80-90 ◽  
Author(s):  
Kathleen M. West ◽  
Scarlett E. Hopkins ◽  
Kim J. Hopper ◽  
Gerald V. Mohatt ◽  
Bert B. Boyer

The Center for Alaska Native Health Research is a community-based participatory research center that conducts studies involving genetic research with Yup’ik Eskimo community members in Southwest Alaska, where Yup’ik remains the first language for most residents. Cultural equivalents are needed to communicate results of these studies among all partners and members of the participating communities, since many scientific terms have no direct translation in Yup’ik. To inform that effort, we examined local understandings of genetics and heredity in one community. Here, we report results from back-translated Yup’ik interviews, and identify working genetic concepts shared by participants from interviews and focus groups. We suggest issues involved in, and some potential steps toward, developing a concise, scientifically accurate and culturally relevant term for “genetics” and other health concepts.


2017 ◽  
Vol 1 (S1) ◽  
pp. 47-48
Author(s):  
Amy LeClair ◽  
Carolyn Rubin ◽  

OBJECTIVES/SPECIFIC AIMS: Addressing Disparities in Asian Populations through Translation research (ADAPT) is a community-research partnership funded by the Tufts Clinical Translational Sciences Institute (CTSI). Founded in 2011, this collaborative brings together 7 Chinatown-serving community-based organizations and academic researchers with the goal of improving health for the local Chinatown community and beyond. The goal of this research project was to document the best practices, lessons learned, and process through which ADAPT has developed and grown. The aim of this project is to disseminate the model to other CTSAs who are currently engaged in METHODS/STUDY POPULATION: We used a combination of qualitative interviews and content analysis to gather data on the evolution of ADAPT over the last 5 years. Current members from both community organizations and the university/medical center were interviewed about their experiences participating in ADAPT. When possible, interviews were recorded and transcribed verbatim. Deidentified transcripts and administrative documents including meeting minutes, conference summaries, bylaws, and mission statements were coded using Dedoose analytic software. RESULTS/ANTICIPATED RESULTS: Established community-based participatory research (CBPR) principles, including mutual respect, transparency, and commitment, are viewed as necessary, but not sufficient. Patience—both with other members and with the group as a work in progress—is highlighted as being a necessary characteristic of participants. Time and funding are 2 of the most important resources, and the majority of members agree that there is no substitute for “skin in the game.” Attempts at last minute, opportunistic engagement were provided as examples of what had not worked. One ongoing tension is the balance between process and product. Individual members are beholden to organizations to different degrees, and the need to produce something in the form of publications or grant money can limit the amount of time members can commit to the collaborative. At the same time, these products are unlikely to materialize if members are not invested in the process of growing and sustaining the collective. DISCUSSION/SIGNIFICANCE OF IMPACT: Out of the 7 community organizations who currently participate in ADAPT, only 1 is explicitly focused on health in the traditional sense. The others are primary service organizations, but because they understand the impact of the social determinants of health on the local community—including housing, employment, education, nutrition, among other factors—the research collaborative is able to leverage the knowledge and expertise of the academic researchers and the community partners to focus on health topics most salient to the local Chinatown community.


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