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Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation

Author

Listed:
  • Vanessa Y. Hiratsuka

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

  • Julie A. Beans

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

  • Renee F. Robinson

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

  • Jennifer L. Shaw

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

  • Ileen Sylvester

    (Southcentral Foundation Executive and Tribal Services, 4501 Diplomacy Drive, Anchorage, AK 99508, USA)

  • Denise A. Dillard

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

Abstract

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.

Suggested Citation

  • Vanessa Y. Hiratsuka & Julie A. Beans & Renee F. Robinson & Jennifer L. Shaw & Ileen Sylvester & Denise A. Dillard, 2017. "Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation," IJERPH, MDPI, vol. 14(11), pages 1-11, October.
    • Handle: RePEc:gam:jijerp:v:14:y:2017:i:11:p:1324-:d:117120
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    References listed on IDEAS

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    Cited by:

    1. Lauren C. Smayda & Gretchen M. Day & Diana G. Redwood & Julie A. Beans & Vanessa Y. Hiratsuka & Sarah H. Nash & Kathryn R. Koller, 2023. "Cancer Screening Prevalence among Participants in the Southcentral Alaska Education and Research towards Health (EARTH) Study at Baseline and Follow-Up," IJERPH, MDPI, vol. 20(16), pages 1-14, August.
    2. Jennifer L. Shaw & Julie A. Beans & Katherine Anne Comtois & Vanessa Y. Hiratsuka, 2019. "Lived Experiences of Suicide Risk and Resilience among Alaska Native and American Indian People," IJERPH, MDPI, vol. 16(20), pages 1-13, October.

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