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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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    8. 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.
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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. Vanessa Y. Hiratsuka & Julie A. Beans & Christie Byars & Joseph Yracheta & Paul G. Spicer, 2024. "Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens," IJERPH, MDPI, vol. 21(9), pages 1-16, August.
    4. 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.
    5. 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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