American Indian and Alaska Native concerns about genomic research have, in a very real sense, been foundational in ethical, legal, and social implications scholarship. Sadly, many of these issues remain unresolved. Concerns about the protection of samples and data continue to engage many tribal communities, as do problems with the actual and potential abuse of genetic information. At the same time, many tribes are creating new relationships between science and society, especially in tribal research offices that are increasingly common. Our project seeks to explore these formations through a consortium of tribal and community sites. By pairing these with expertise in genomic research at the Oklahoma Medical Research Foundation and American Indian and Alaska Native health research, deliberation, and Native American Studies at the University of Oklahoma, we seek to create an interdisciplinary center capable of supporting innovative research and education of the next generation of researchers poised to harness exciting innovations in biomedicine to the needs of American Indian and Alaska Native communities. We have three specific aims: 1) to develop a transdisciplinary team at the University of Oklahoma for research on the ethical, legal, and social implications of genomic knowledge for American Indian and Alaska Native communities; 2) to build a consortium of tribal and community-based institutions to conduct culturally grounded comparative research on the ethical, legal, and social implications of genomic research in American Indian and Alaska Native communities; and 3) to create an integrated educational program in the ethical, legal, and social implications of genomics in American Indian and Alaska Native communities. Our proposed center creates the infrastructure to support a broad range of community-driven inquiries into health and health care, in both tribal and federal systems, with an explicit plan to seed multiple research projects in a ramifying network of tribes and universities.
American Indian and Alaska Native concerns about genomic research have been well-documented. This project seeks to make concrete progress in the science of community engagement through comparative work in tribal settings with the aim of articulating the possible ways in which genomic research can and should proceed. Simultaneously, it seeks to develop an educational program to engage underrepresented American Indian and Alaska Native students in research on the ethical, legal, and social implications of genomics in tribal communities.
