Abstract
This paper explores Native American perceptions on DNA biobanking. A qualitative study was conducted among self-declared Native Americans living off reservation in two Midwest cities. Findings demonstrate a paradox: Informants maintain strong hopes for the transformative power of gene-based research while voicing very particular social anxieties. Emerging genomic technologies elicit concerns over the potential for genetic stigmatization or discrimination based on race, preventing access to health insurance or employment. Frequently, social anxieties adopt the narrative form of conspiracy theories which portray powerful agents exploiting or abusing a disenfranchised population. We argue that while Native Americans do not have a monopoly on the production of conspiracy narratives, their anxieties originate in a unique set of historical and social circumstances that position genetics research as part of a much larger political narrative. We conclude by suggesting that tribal approaches to biomedical research and in particular the use of biobanks that use concepts such as “dna on loan” and emphasize trust building, collaboration and benefit sharing present a good model to deal with some of the anxieties elicited in this research but could also be taken as a model for biobank governance in general.
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Acknowledgments
The authors wish to thank Barbara Koening for discussing some of the ideas leading to the preparation of this manuscript.
Conflict of interest
The authors’ work has been funded by a grant received from the Mayo Clinic, Rochester, Minnesota.
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Abadie, R., Heaney, K. “We can wipe an entire culture”: fears and promises of DNA biobanking among Native Americans. Dialect Anthropol 39, 305–320 (2015). https://doi.org/10.1007/s10624-015-9391-4
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DOI: https://doi.org/10.1007/s10624-015-9391-4