One of the key differences in setting up studies with AI/AN compared to other ethnic groups is that informed consent is required not only from individuals but also from tribes, each of which is a sovereign nation. The complexities of negotiating research programs can be challenging since this requires interaction with the bureaucratic officials of a sovereign government and its elected officials from small communities who may not only have little knowledge or interest in genetic research but may be wary of outsiders asking questions that may impact tribal member privacy and even cultural identity. Some of the immediate concerns can be: what is the underlying motive of the proposed research? What is the benefit to the research organization? Will there be any tangible benefits for the community that is being studied? Might the study result in a negative image of the tribe?
