Opportunities and Challenges to Data Sharing with American Indian Tribal Nations
In this chapter I argue that data sharing, new as it is to cultural anthropology, must be carefully considered by researchers and tribes at the conceptual stages of research. In my opinion, sharing all research data with tribes presents an opportunity to decolonize the discipline’s history of exploitative research by challenging disciplinary notions of control, ownership, and management of ethnographic data, not to mention it recognizes and reaffirms the sovereign status of tribes. I provide some useful definitions, provide a brief review of various data, and list the types of data I collected in my most recent research partnership. In doing so, I show the diverse range of data that is collected in research while also foregrounding the ethical methodological concerns of sharing data. Next, I introduce the federal Indian trust relationship and a brief history of exploitative research in Indian country, both of which provide a context for developing data-sharing policies. In the final section, I provide a list of questions tribes and researchers may wish to consider as they discuss and negotiate data-sharing agreements.
KeywordsYsleta del Sur Pueblo El Paso Texas Diabetes Tribes Pueblo Trust relationship National Institutes of Health Health policy Decolonization Community-based participatory research (CBPR) Mistrust Data-sharing guidelines Data archive Data enclave
- American Anthropological Association. (2012). Principles of Professional Responsibility of the American Anthropological Association. Available at http://ethics.americananthro.org/category/statement/. Accessed 30 Mar 2019.
- Anderson, K. (2005). Tending the Wild: Native American Knowledge and the Management of California’s Natural Resources. Berkeley: University of California Press.Google Scholar
- Bernard, H. R., & Gravlee, C. C. (Eds.). (2015). Handbook of Methods in Cultural Anthropology. Lanham: Rowman & Littlefield.Google Scholar
- Bruna, S. (2003). Issues of Tigua Recognition: Negotiating Legal and Ethnic Identity on the U.S.-Mexico Border. M.A. Thesis, Program in the Social Sciences, University of Chicago, Chicago.Google Scholar
- Bruna, S. (2015). Religious Gardens, Pilgrimages and Dancing: A Critique of Translated Interventions in a Tribal Community. In C. T. Morris & A. G. DeLaricheliere (Eds.), The Applied Anthropology of Obesity: Prevention, Intervention and Identity. Washington, DC: Rowman & Littlefield.Google Scholar
- Bruna-Lewis, S. (2013). “Sowing Seeds for the Future with Tigua History and Tradition”: Diabetes Prevention and Management at Ysleta del Sur Pueblo. Department of Anthropology, University of New Mexico, Albuquerque, New Mexico, p. 353.Google Scholar
- Cohen, F. S. (2018). Cohen’s Handbook of Federal Indian Law. New York: LexisNexis.Google Scholar
- Field, L. W., & Fox, R. G. (2007). Anthropology Put to Work. Wenner-Gren International Symposium Series. New York: Berg.Google Scholar
- Freire, P. (2000). Pedagogy of the Oppressed. New York: Continuum.Google Scholar
- Harding, A., Harper, B., Stone, D., O’Neill, C., Berger, P., Harris, S., & Donatuto, J. (2011). Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues. Environmental Health Perspectives, 120(1), 6–10.Google Scholar
- Havasupai Tribe of the Havasupai Reservation v. Arizona Board of Regents and Therese Ann Markow. (2009). Arizona Court of Appeals, No. 1 CA-CV 07-0454 and 1 CA-CV 07-0801.Google Scholar
- Health Insurance Portability and Accountability Act of 1996. (1996). Public Law 104–191. US Statut Large, 1996. 110, 1936–2103.Google Scholar
- Ho-Chunk Nation. (n.d.). Ho-Chunk Nation Code (HCC) Title 3 – Health and Safety Code Section 3 – Tribal Research Code, in 3 HCC 3. 2005. Black River Falls: Ho-Chunk Nation.Google Scholar
- Mark, M. (2010). Sample Size and Saturation in PhD Studies Using Qualitative Interviews. Forum: Qualitative Social Research, 11, 3.Google Scholar
- Mason, M. (2010). Sample Size and Saturation in PhD Studies Using Qualitative Interviews. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 11(3). https://doi.org/10.17169/fqs-11.3.1428.
- Minkler, M., & Wallerstein, N. (2008). Community-Based Participatory Research for Health from Process to Outcomes. San Francisco: Jossey-Bass.Google Scholar
- National Institutes of Health. (2018, July 2). NIH Data Sharing Policy. Available from: https://grants.nih.gov/grants/policy/data_sharing/
- Navajo Nation. (2009). Navajo Nation Research Program: Human Research Review Board. [cited 2018 July 10]. Available from: http://www.nnhrrb.navajonsn.gov/
- Tribal Epi Center. (2018, July 10). Tribal Epidemiology Centers. Available from: https://tribalepicenters.org/
- UNM. (2017). University of New Mexico (UNM) Community Environmental Health Program and National Institutes of Health, Meeting Summary. Tribal Data Sharing and Genetics Policy Development Workshop. Albuquerque: University of New Mexico.Google Scholar
- Warren-Mears, V. (n.d.). Principles and Models for Data Sharing Agreements with American Indian/Alaska Native Communities. Portland: Northwest Portland Area Indian Health Board.Google Scholar