Dr. Orr's long-term goal is to become an independent researcher with the background and skills required to investigate American Indian attitudes about health and its relationship to research and regulation. His desire is not only to understand the relationship of American Indians with health research, but also to evaluate American Indian's potential responses to additional regulation. With Dr. Paul Spicer, Dr. Orr has developed a two-year program of research and career development activities to work with the University of Oklahoma's Center on American Indian and Alaska Native Genomic Research, which is focused on the ethical and political aspects of genomic research with American Indian and Alaska Native populations. Dr. Orr's activities will include a comprehensive literature review, an innovative research project, and mentoring related to the proposed research. The literature review will address all relevant publications on genomic research in indigenous communities in the U.S. This work will enable Dr. Orr to assess key attributes of genomic research concerns and regulation as it pertains to American Indians and Alaska Natives. It will culminate in a manuscript that reviews the literature and provides a foundation for future research. Dr. Orr's next activity will be to develop a rank-order survey tool to study and understand the diversity and patterns of belief about genomics among American Indians living in Oklahoma. Dr. Orr will then develop a survey to measure the relationship between feelings of trust and attitudes about participating in genomic research. Similar tools already exist for other health issues, but not for genomics. Successful completion of this supplement will establish the feasibility of the tool and enable an assessment of the diversity of beliefs about genomic regulation and an exploration of the association that trust has with attitudes about participation in genomic research.
American Indians and Alaska Natives are underrepresented in genomic studies. These populations are at risk of missing the potential benefits generated from this research. This underrepresentation is in part a result of previous genomic research projects and a troubled relationship with outside governments. Our project takes news approach to understanding the diversity of opinions about genetic research in American Indian communities and the relationship between trust and attitudes about genomic research.
