The specific aims of this project are: 1) 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; 2) 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; 3) To compare the results of ELSI research conducted with the two Native communities in this project with one another and with ELSI research conducted among Euro-American populations; and 4) To use this comparison to construct an approach to non-Western communities for ELSI research and for possible HGP participation 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: l) Biological substance and genealogical relationship; 2) Conceptions of history and identity; and 3) 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. The results of this project will be significant because they will have such a marked contrast with previous ELSI research among Euro-American populations. They will provide detailed empirical examples of the importance of ethnic and cultural differences in the implications of the HGP, especially the issue of ownership and control of genetic information. The construction of a general model for conducting ELSI research among non-Western peoples will also be significant, particularly as the HGP expands into a global study of all human populations.
| Tan, F K; Stivers, D N; Foster, M W et al. (1998) Association of microsatellite markers near the fibrillin 1 gene on human chromosome 15q with scleroderma in a Native American population. Arthritis Rheum 41:1729-37 |
