1Anthropology, University of Utah, 2Endocrinology, Metabolism and Molecular Medicine, Feinberg School of Medicine, 3Anthropology, Northwestern University
Thursday 4:00-4:15, Ballroom A
Community consultation is an essential component of the informed consent process in community based genetic research. Anthropological genetic research among North Alaskan Iñupiat communities provides insights into the dynamics of community/researcher communication.
Genetic analyses of population history and migration have often been contentious in indigenous communities, although not in North Alaska. Among North Slope communities, genetic analyses proved generally concordant with local narratives regarding community interaction and exchange, although both ancient and modern DNA analyses revealed some surprises regarding long-range interactions with Siberian populations, patterns of shared ancestry among communities, and non-Native admixture. Despite community enthusiasm for the project, and regular community updates, visits to each community at the end of the study to return and discuss results elicited little if any community interest. This was unexpected given the oft repeated complaint of researchers taking material from communities but rarely if ever returning to provide results of the analyses performed.
A variety of issues, including timing of community visits, packaging of results for community feedback, clarifying relevance of the results, and even the weather in a changing arctic, are possible reasons for the lack of interest in final community feedback. Continual updates over the course of the multi-year project may also have led communities to assume they already knew the results. Increased community and ethical awareness in anthropological genetic practice, including community consultation and explanation of the greater resolution of genomic analyses, will become increasingly important.
This research was supported by NSF grants OPP-0637246, OPP-0732846 (DHO’R) and OPP-0732857 (MGH).