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
Anderson, N. R., et al. (2007). Issues in Biomedical Research Data Management and Analysis: Needs and Barriers. Journal of the American Medical Informatics Association, 14(4), 478–488.
CrossRef
Google Scholar
Barton, S. S. (2004). Narrative Inquiry: Locating Aboriginal Epistemology in a Relational Methodology. Journal of Advanced Nursing, 45(5), 519–526.
CrossRef
Google Scholar
Bernard, H. R., & Gravlee, C. C. (Eds.). (2015). Handbook of Methods in Cultural Anthropology. Lanham: Rowman & Littlefield.
Google Scholar
Brugge, D., & Missaghian, M. (2006). Protecting the Navajo People Through Tribal Regulation of Research. Science and Engineering Ethics, 12(3), 491–507.
CrossRef
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
Fluehr-Lobban, C. (2008). Collaborative Anthropology as Twenty-First-Century Ethical Anthropology. Collaborative Anthropologies, 1, 175–182.
CrossRef
Google Scholar
Freire, P. (2000). Pedagogy of the Oppressed. New York: Continuum.
Google Scholar
Garrison, N. A. (2013). Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Science, Technology, & Human Values, 38(2), 201–223.
CrossRef
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
Hart, E. M., et al. (2016). Ten Simple Rules for Digital Data Storage. PLoS Computational Biology, 12(10), e1005097.
CrossRef
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
James, R., et al. (2014). Exploring Pathways to Trust: A Tribal Perspective on Data Sharing. Genetics in Medicine, 16(11), 820–826.
CrossRef
Google Scholar
Kim, Y. (2017). Fostering Scientists’ Data Sharing Behaviors Via Data Repositories, Journal Supplements, and Personal Communication Methods. Information Processing & Management, 53(4), 871–885.
CrossRef
Google Scholar
Kim, Y., & Adler, M. (2015). Social Scientists’ Data Sharing Behaviors: Investigating the Roles of Individual Motivations, Institutional Pressures, and Data Repositories. International Journal of Information Management, 35(4), 408–418.
CrossRef
Google Scholar
Kirkman, M., Hammarberg, K., & de Lacey, S. (2016). Qualitative Research Methods: When to Use Them and How to Judge Them. Human Reproduction, 31(3), 498–501.
CrossRef
Google Scholar
Lai, J. C. (2014). Indigenous Cultural Heritage and Intellectual Property Rights: Learning from the New Zealand Experience? Heidelberg: Springer.
CrossRef
Google Scholar
Lamphere, L. (2004). The Convergence of Applied, Practicing, and Public Anthropology in the 21st Century. Human Organization, 63(4), 431–443.
CrossRef
Google Scholar
Lassiter, L. E. (2005). Collaborative Ethnography and Public Anthropology. Current Anthropology, 46(1), 83–106.
CrossRef
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
Modzelewski, D. (2018). Pueblo Water Rights. In J. Hendry et al. (Eds.), Indigenous Justice: New Tools, Approaches, and Spaces (pp. 53–68). London: Palgrave Macmillan UK.
CrossRef
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/
O’Rourke, P. P., et al. (2015). Harmonization and Streamlining of Research Oversight for Pragmatic Clinical Trials. Clinical Trials, 12(5), 449–456.
CrossRef
Google Scholar
Reardon, S. (2017). Navajo Nation Reconsiders Ban on Genetic Research. Nature News, 550(7675), 165.
CrossRef
Google Scholar
Tribal Epi Center. (2018, July 10). Tribal Epidemiology Centers. Available from: https://tribalepicenters.org/
Tsai, A. C., et al. (2016). Promises and Pitfalls of Data Sharing in Qualitative Research. Social Science & Medicine, 169, 191–198.
CrossRef
Google Scholar
Tsosie, R. (2007). Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm. The Journal of Law, Medicine & Ethics, 35(3), 396–411.
CrossRef
Google Scholar
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
Wallerstein, N., & Duran, B. (2010). Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity. American Journal of Public Health, 100, S40–S46. https://doi.org/10.2105/AJPH.2009.184036.
CrossRef
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
Wutich, A., & Bernard, H. R. (2016). Sharing Qualitative Data & Analysis. With Whom and How Widely?: A Response to ‘Promises and Pitfalls of Data Sharing in Qualitative Research’. Social Science & Medicine, 169, 199–200.
CrossRef
Google Scholar