ELSI Research in Two Native American Communities

The specific aims of this project are: to identify the ethical, legal, and social implications of the HGP from the perspectives of two Native American communities, with particular emphasis on Native conceptions of privacy issues; to describe the decision making process in each community, with particular emphasis on collective decision making and the extent of communal authority over individual members; to compare the results of ELSI research conducted with the two Native populations; and to use this comparison to construct a model for ELSI research and possible HGP participation with non-Western communities that will be generally applicable while still culturally sensitive. Project researchers will use qualitative, ethnographic approaches including genealogical, oral historical, political anthropological, and discourse analysis methodologies to work with participants from the Plains Apache and Euchee communities. Study participants in each community will be organized into working groups which will discuss ELSI issues in three general areas: biological substance and genealogical relationship; conceptions of history and identity; and community decision making and authority. Based on these discussions, which will make use of empirical case studies to consider HGP implications from the Native community's point of view, project researchers will identify, describe, and compare community perspectives and construct the general model.