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Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review

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  • Julie A. Beans

    (Southcentral Foundation Research Department, 4085 Tudor Centre Dr., Anchorage, AK 99508, USA)

  • Bobby Saunkeah

    (Chickasaw Nation Department of Health, Research and Public Health Division, 1921 Stonecipher Boulevard, Ada, OK 74820, USA)

  • R. Brian Woodbury

    (Southcentral Foundation Research Department, 4085 Tudor Centre Dr., Anchorage, AK 99508, USA)

  • Terry S. Ketchum

    (Department of Anthropology, University of Oklahoma, 455 West Lindsey, Dale Hall Tower 521, Norman, OK 73019, USA)

  • Paul G. Spicer

    (Department of Anthropology, University of Oklahoma, 455 West Lindsey, Dale Hall Tower 521, Norman, OK 73019, USA)

  • Vanessa Y. Hiratsuka

    (Southcentral Foundation Research Department, 4085 Tudor Centre Dr., Anchorage, AK 99508, USA)

Abstract

Experiences with unethical research practices have caused some American Indian and Alaska Native (AIAN) individuals, organizations, and tribes to mistrust health research. To build trust and repair relationships, current research with AIAN peoples often involves participatory research (PR) approaches. This article assesses community-level protections described in the scientific literature on PR involving AIAN communities. A scoping review search in PubMed and PsychInfo for articles published between January 2000 and June 2017 yielded an AIAN PR article dataset. Of 178 articles, a subset of 23 articles that described aspects of community protections were analyzed for descriptions of community-level protection practices. We identified the presence or absence of a description of four community protection measures in each article: a tribal research department, the development of community-level mechanisms for research regulation if not present, community collaboration throughout the research process, and project employment of a community member. The development of community-level mechanisms for research regulation was described in 39% of the articles. Ninety-one percent of these articles described community collaboration during the research process. Seventeen percent included descriptions of all four community-level protection measures. The extent and consistency to which community-level protections are described is variable; the current literature lacks reporting on community-level protection practices specific to tribal communities.

Suggested Citation

  • Julie A. Beans & Bobby Saunkeah & R. Brian Woodbury & Terry S. Ketchum & Paul G. Spicer & Vanessa Y. Hiratsuka, 2019. "Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review," Social Sciences, MDPI, vol. 8(4), pages 1-18, April.
  • Handle: RePEc:gam:jscscx:v:8:y:2019:i:4:p:127-:d:224696
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    References listed on IDEAS

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    1. Morton, D.J. & Proudfit, J. & Calac, D. & Portillo, M. & Lofton-Fitzsimmons, G. & Molina, T. & Flores, R. & Lawson-Risso, B. & Majel-McCauley, R., 2013. "Creating research capacity through a tribally based institutional review board," American Journal of Public Health, American Public Health Association, vol. 103(12), pages 2160-2164.
    2. Bromley, E. & Mikesell, L. & Jones, F. & Khodyakov, D., 2015. "From subject to participant: Ethics and the evolving role of community in health research," American Journal of Public Health, American Public Health Association, vol. 105(5), pages 900-908.
    3. Rhoades, E.R. & Rhoades, D.A., 2014. "The public health foundation of health services for American Indians & Alaska natives," American Journal of Public Health, American Public Health Association, vol. 104(S3), pages 278-285.
    4. Warne, D. & Frizzell, L.B., 2014. "American Indian Health Policy: Historical trends and contemporary issues," American Journal of Public Health, American Public Health Association, vol. 104(S3), pages 263-267.
    5. Pacheco, C.M. & Daley, S.M. & Brown, T. & Filippi, M. & Greiner, K.A. & Daley, C.M., 2013. "Moving forward: Breaking the cycle of mistrust between American Indians and researchers," American Journal of Public Health, American Public Health Association, vol. 103(12), pages 2152-2159.
    6. Castor, M.L. & Smyser, M.S. & Taualii, M.M. & Park, A.N. & Lawson, S.A. & Forquera, R.A., 2006. "A nationwide population-based study identifying health disparities between American Indians/Alaska Natives and the general populations living in select urban counties," American Journal of Public Health, American Public Health Association, vol. 96(8), pages 1478-1484.
    7. Katrina G. Claw & Matthew Z. Anderson & Rene L. Begay & Krystal S. Tsosie & Keolu Fox & Nanibaa’ A. Garrison, 2018. "A framework for enhancing ethical genomic research with Indigenous communities," Nature Communications, Nature, vol. 9(1), pages 1-7, December.
    8. Simonds, V.W. & Christopher, S., 2013. "Adapting western research methods to indigenous ways of knowing," American Journal of Public Health, American Public Health Association, vol. 103(12), pages 2185-2192.
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    Cited by:

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    2. Julie A. Beans & Bobby Saunkeah & R. Brian Woodbury & Terry S. Ketchum & Paul G. Spicer & Vanessa Y. Hiratsuka, 2019. "Correction: Beans, J.A.; et al. Community Protections in American Indian and Alaska Native Participatory Research–A Scoping Review. Soc. Sci . 2019, 8(4), 127," Social Sciences, MDPI, vol. 8(9), pages 1-2, August.
    3. Neha A. John-Henderson & Benjamin J. Oosterhoff & Lester R. Johnson & Mary Ellen Lafromboise & Melveena Malatare & Emily Salois, 2022. "COVID-19 and food insecurity in the Blackfeet Tribal Community," Food Security: The Science, Sociology and Economics of Food Production and Access to Food, Springer;The International Society for Plant Pathology, vol. 14(5), pages 1337-1346, October.
    4. Orly Stampfer & Gillian Mittelstaedt & Victoria Breckwich Vásquez & Catherine J. Karr, 2019. "Guidance for Genuine Collaboration: Insights from Academic, Tribal, and Community Partner Interviews on a New Research Partnership," IJERPH, MDPI, vol. 16(24), pages 1-14, December.

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