Genetics Testing in Midwest American Indians
Institution: University of Minnesota Duluth
FOA Number: RFA-HG-02-003
The goal of this two-year project is to uncover issues related to genetics testing among the Native American populations of the Midwest. A project of this nature cannot be merely culturally sensitive but must be firmly embedded within the belief system of those who will be involved with and most affected by the proposed research testing. Groups and individual elders will be asked to comment on their concerns as they relate to a modern research topic through traditional activities. The proposed project will combine a qualitative research process known as grounded theory and the tradition of Native American story telling. It will bring together Native American elders who will be asked to respond to a series of questions that pertain to ethical, social and legal concerns surrounding genetics testing in Native American communities. Their responses will be recorded, transcribed and coded according to grounded theory methodology. Through these responses the elders will provide genetics researchers with information about their concerns and in so doing will supply insights into respectful and culturally appropriate interactions between the Native American and research communities.
The qualitative project design (specifically grounded theory) was chosen to allow elders the opportunity to teach in a manner that is familiar and comfortable to them rather than attempting to gather information using a method that does not take into account these traditional ways. In this long used social science method the data is generated from focus groups and individual interviews, this data is analyzed then shaped into a theory or hypothesis to provide an explanation of the information collected. This process allows the researcher to ground the theory within the data, thus the designation, grounded theory.
The success of this project will demonstrate the strength of cooperative qualitative and quantitative research as it pertains to a single research objective. But most important is the opportunity for tribal members to direct research to integrate cultural beliefs and values and in the end preserve respect of the Native American research subjects and their traditions. (Co-funded with NIDDK)
NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
Jun 15, 2003
Apr 30, 2005
behavioral /social science research tag; Belief; Clinical Research; culture; data collection methodology /evaluation; Ethics; Genetic Screening; health related legal; human subject; Interview; longitudinal human study; Native Americans; Religion; social perception