Matching Items (3)
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- All Subjects: American Indian . .
- All Subjects: IRB
- Creators: Vicenti Carpio, Myla
- Creators: Ali, Ahmad
Description
In the university setting, when a person wants to conduct research that deals with human subjects, they are required to receive the approval of their Institutional Review Board (IRB). This process takes place to ensure the proposed research is ethical and poses minimal risks to the willing subject. In Indian Country, there is a growing trend where American Indian nations are taking control over regulating research that is conducted within their jurisdictional boundaries.
In my thesis, I discuss the historical background that has led to the IRBs academics are familiar within universities they see today. In addition, I discuss the body of literature that addresses IRBs, human subjects, and the debate on which research should or should not be regulated by universities. I will then, critically analyze the established research protocols that exist in Arizona American Indian tribes. I use Darrell Posey's (1996) idea of Community Controlled Research (CCR) as the framework for my analysis. CCR dictates the people of the community decide the ways in which research is conducted. The purpose of my research is to create recommendations that will assist and inform tribes how to either, strengthen their existing protocols, or create a research protocol that will promotes Community Controlled Research.
In my thesis, I discuss the historical background that has led to the IRBs academics are familiar within universities they see today. In addition, I discuss the body of literature that addresses IRBs, human subjects, and the debate on which research should or should not be regulated by universities. I will then, critically analyze the established research protocols that exist in Arizona American Indian tribes. I use Darrell Posey's (1996) idea of Community Controlled Research (CCR) as the framework for my analysis. CCR dictates the people of the community decide the ways in which research is conducted. The purpose of my research is to create recommendations that will assist and inform tribes how to either, strengthen their existing protocols, or create a research protocol that will promotes Community Controlled Research.
ContributorsTom, Naomi (Author) / Vicenti Carpio, Myla (Thesis advisor) / Killsback, Leo (Committee member) / Tippeconnic, John (Committee member) / Arizona State University (Publisher)
Created2015
Description
The Yavapai-Apache Nation represents one American Indian tribe whose experiences of historical trauma and alternative responses to historical trauma is not fully understood. This study sought to explore the presence of historical trauma among individuals who did not directly experience events of historical trauma, and ways those individuals have dealt with the possible impact of historical trauma. The foundation of this research reflected that pathological outcomes may not be universal responses to historical trauma for a sample of Yavapai-Apache Nation college graduates, as evidenced by their academic success, positive life outcomes, and resilience. The study utilized Indigenous methodologies and conversational and semi-structured interviews with Yavapai-Apache Nation co-researchers and four central themes emerged. The first theme of Family indicated the Yavapai-Apache Nation co-researchers with a strong orientation toward the family. Families provided support and this positive perception of family support provided the encouragement needed to cope with various experiences in their lives, including school, raising their own families, career goals and helping to impart teachings to their own children or youth within the community. The second theme, Identity, indicated the co-researchers experienced the effects of historical trauma through the loss of language, culture and identity and that while losses were ongoing, they acknowledged the necessity of identity re-vitalization. The third theme, Survival, indicated that despite hardships, the co-researchers acknowledge survival as a collective effort and achieved by an individual’s efforts within the group. The co-researchers described their personal understanding of education and success. They also discussed how they contribute to the survival of the Yavapai-Apache Nation. The fourth theme, Intersection, indicated the co-researchers’ stories and experiences in which the themes of family, identity and survival intersected with one another. It was necessary to include this final theme to show respect for the co-researchers’ stories and experiences. Also discussed are the study’s strengths, limitations, and the implications for research with the Yavapai-Apache Nation and research with Indigenous Communities.
ContributorsBaker, Tahnee Marie (Author) / Segal, Elizabeth (Thesis advisor) / Vicenti Carpio, Myla (Committee member) / Sangalang, Cindy (Committee member) / Arizona State University (Publisher)
Created2018
Description
This paper will chronicle my personal experience in trying to design and initiate a retrospective patient data study to determine the prevalence of Primary Sclerosing Cholangitis (“PSC”) in certain races/ethnic groups in Arizona. This experience will also be the basis for my proposed roadmap for a more successful future study.
My nearly 10 month thesis project of trying to complete a study yielded considerable ‘learning opportunities’ in large part due to my inexperience. I made numerous errors in sequencing tasks, grossly under-scoping elapsed time and hours for other tasks, completely overlooking other critical tasks, and being insensitive to how irrelevant I and my project were to the many professionals whose help I needed to complete the study. Based upon the knowledge I gained through this process, I will describe the design of a future study of retrospective patient data that will assess whether PSC patients in Phoenix, Arizona follow racial/ethnic trends. I chose Phoenix as an ideal location to perform this proposed study because of the diverse racial/ethnic population in the greater Phoenix area. The goal will be to obtain and review 20 years of retrospective patient data from three large hospital groups in Phoenix, identify the races/ethnicities of PSC patients, and quantify the prevalence and incidence of PSC in such races/ethnicities. The lack of IRB uniformity among the subject hospitals/clinics will pose a challenge, but a detailed outline of how to approach the IRB approval process and obtain PSC patient data from each institution is provided.
My nearly 10 month thesis project of trying to complete a study yielded considerable ‘learning opportunities’ in large part due to my inexperience. I made numerous errors in sequencing tasks, grossly under-scoping elapsed time and hours for other tasks, completely overlooking other critical tasks, and being insensitive to how irrelevant I and my project were to the many professionals whose help I needed to complete the study. Based upon the knowledge I gained through this process, I will describe the design of a future study of retrospective patient data that will assess whether PSC patients in Phoenix, Arizona follow racial/ethnic trends. I chose Phoenix as an ideal location to perform this proposed study because of the diverse racial/ethnic population in the greater Phoenix area. The goal will be to obtain and review 20 years of retrospective patient data from three large hospital groups in Phoenix, identify the races/ethnicities of PSC patients, and quantify the prevalence and incidence of PSC in such races/ethnicities. The lack of IRB uniformity among the subject hospitals/clinics will pose a challenge, but a detailed outline of how to approach the IRB approval process and obtain PSC patient data from each institution is provided.
ContributorsBuness, James Gage (Author) / Lindor, Keith (Thesis director) / Ali, Ahmad (Committee member) / School of Life Sciences (Contributor) / Barrett, The Honors College (Contributor)
Created2016-12