Realizing the Self-Determination Goals of Indigenous People in Genetics Research
Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American Indian and Alaska Native tribes are recognized as both a racial group and a political entity. As of April 2021, the United States Bureau of Indian Affairs federally recognizes 574 tribes as Indian entities that are eligible to receive services from the United States. The U.S. Constitution recognizes tribes as sovereign nations with the right to self-determination and grants Congress the authority to interact with Indian tribes. This right to self-determination includes authority over how and what type of research may be conducted within tribal communities and how, when, and who controls data access, use, and reporting on results. This collection provides an introduction to the ELSI literature at the intersection of genomics and Indigenous Peoples in clinical, public health, and community contexts. …
- Hudson, M., Garrison, N. A., Sterling, R., Caron, N. R., Fox, K., Yracheta, J., Anderson, J., Wilcox, P., Arbour, L., Brown, A., Taualii, M., Kukutai, T., Haring, R., Te Aika, B., Baynam, G. S., Dearden, P. K., Chagné, D., Malhi, R. S., Garba, I., Tiffin, N., Bolnick, D., Stott, M., Rolleston, A. K., Ballantyne, L. L., Lovett, R., David-Chavez, D., Martinez, A., Sporle, A., Walter, M., Reading, J., & Carroll, S. R.(2020). Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews Genetics, 21(6), 377-384.
- Carroll, S. R., Garba, I., Figueroa-Rodríguez, O. L., Holbrook, J., Lovett, R., Materechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R., Sara, R., Walker, J. D., Anderson, J., & Hudson, M. (2020). The CARE principles for Indigenous data governance. Data Science Journal, 19(1), 1-12.
- Liggins, L., Hudson, M., & Anderson, J. (2021). Creating space for Indigenous perspectives on access and benefit-sharing: Encouraging researcher use of the Local Contexts Notices. Molecular Ecology, 1-6. Advance online publication.
- Tsosie, K. S., Yracheta, J. M., & Dickenson, D. (2019). Overvaluing individual consent ignores risks to tribal participants. Nature Reviews Genetics, 20(9), 497-498.
- Saunkeah, B., Beans, J. A., Peercy, M. T., Hiratsuka, V. Y., & Spicer, P. (2021). Extending research protections to tribal communities. American Journal of Bioethics, 1-13. Advance online publication.
- Around Him, D., Aguilar, T. A., Frederick, A., Larsen, H., Seiber, M., & Angal, J. (2019). Tribal IRBs: A framework for understanding research oversight in American Indian and Alaska Native communities. American Indian and Alaska Native Mental Health Research, 26(2), 71-95.
- Claw, K. G., Anderson, M. Z., Begay, R. L., Tsosie, K. S., Fox, K., Garrison, N. A., & Summer internship for INdigenous peoples in Genomics (SING) Consortium. (2018). A framework for enhancing ethical genomic research with Indigenous communities. Nature Communications, 9(1), 1-7.
- Blanchard, J., Hiratsuka, V., Beans, J. A., Lund, J., Saunkeah, B., Yracheta, J., Woodbury, R. B., Blacksher, E., Peercy, M., Ketchum, S., Byars, C., & Spicer, P. (2020). Power sharing, capacity building, and evolving roles in ELSI: The Center for the Ethics of Indigenous Genomic Research. Collaborations: A Journal of Community-Based Research and Practice, 3(1), 1-13.
- Hiratsuka, V. Y., Beans, J. A., Blanchard, J. W., Reedy, J., Blacksher, E., Lund, J. R., & Spicer, P. G. (2020). An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation. PLOS ONE, 15(3), 1-16.
- Begay, R. L., Garrison, N. A., Sage, F., Bauer, M., Knoki-Wilson, U., Begay, D. H., Becenti-Pigman, B., & Claw, K. G. (2020). Weaving the strands of life (Iiná Bitł'ool): History of genetic research involving Navajo people. Human Biology, 91(3), 189-208.
- Beans, J. A., Woodbury, R. B., Wark, K. A., Hiratsuka, V. Y., & Spicer, P. (2020). Perspectives on precision medicine in a tribally managed primary care setting. AJOB Empirical Bioethics, 11(4), 246-256.
- Blanchard, J. W., Outram, S., Tallbull, G., & Royal, C. (2019). "We don't need a swab in our mouth to prove who we are": Identity, resistance, and adaptation of genetic ancestry testing among Native American communities. Current Anthropology, 60(5), 637-655.
- Trinidad, S. B., Ludman, E. J., Hopkins, S., James, R. D., Hoeft, T. J., Kinegak, A., Lupie, H., Kinegak, R., Boyer, B. B., & Burke, W. (2015). Community dissemination and genetic research: Moving beyond results reporting. American Journal of Medical Genetics Part A, 167(7), 1542-1550.
- Pyett, P., Waples-Crowe, P., & van der Sterren, A. (2009). Engaging with Aboriginal communities in an urban context: Some practical suggestions for public health researchers. Australian and New Zealand Journal of Public Health, 33(1), 51-54.
- Woodbury, R. B., Ketchum, S., Hiratsuka, V. Y., & Spicer, P. (2019). Health-related participatory research in American Indian and Alaska Native communities: A scoping review. International Journal of Environmental Research and Public Health, 16(16), 1-26.
- Morales, C. T., Muzquiz, L. I., Howlett, K., Azure, B., Bodnar, B., Finley, V., Incashola, T., Mathias, C., Laukes, C., Beatty, P., Burke, W., Pershouse, M. A., Putnam, E. A., Trinidad, S. B., James, R., & Woodahl, E. L. (2016). Partnership with the Confederated Salish and Kootenai Tribes: Establishing an advisory committee for pharmacogenetic research. Progress in Community Health Partnerships: Research, Education, and Action, 10(2), 173-183.
About ELSIhub Collections
ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information and offers a mentored editorial experience for ELSI early career researchers and trainees.