Access, Relevance, and Control in the Research Process

Spero M. Manson · Eva Marie Garroutte · R. Turner Goins · Patricia Nez Henderson

110 citations0/0 files storedJournal of Aging and Health

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Indigenous Health, Education, and Rights Ethics in Clinical Research Community Health and Development

Abstract

OBJECTIVE: To illustrate successful strategies in working with American Indian (AI) and Alaska Native (AN) communities in aging and health research by emphasizing access, local relevance, and decision-making processes. METHODS: Case examples of health studies involving older AIs (greater than or equal to 50 years) among Eastern Band Cherokee Indians, a federally recognized reservation; the Cherokee Nation, a rural, nonreservation, tribal jurisdictional service area; and Lakota tribal members living in Rapid City, South Dakota. RESULTS: Local review and decision making reflect the unique legal and historical factors underpinning AI sovereignty. Although specific approval procedures vary, there are common expectations across these communities that can be anticipated in conceptualizing, designing, and implementing health research among native elders. CONCLUSIONS: Most investigators are unprepared to address the demands of health research in AI communities. Community-based participatory research in this setting conflicts with investigators' desire for academic freedom and scientific independence. Successful collaboration promises to enhance research efficiencies and move findings more quickly to clinical practice.

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References

1970Custer Died for Your Sins: An Indian Manifesto 1996Research in American Indian and Alaska Native communities: Navigating the cultural universe of values and process.1997Minorities, Aging and Health 1991Commentary: Research, Redskins, and Reality.

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2006Reciprocity and Constructions of Informed Consent: Researching with Indigenous Populations 2021Research Design in Clinical Psychology 2009The Community Pulling Together: A Tribal Community–University Partnership Project to Reduce Substance Abuse and Promote Good Health in a Reservation Tribal Community 2013Creating Research Capacity Through a Tribally Based Institutional Review Board 2007Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership 2007The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities.2011“Oh No, We Are Just Getting to Know You” : The Relationship in Research With Children and Youth in Indigenous Communities 2014Partnering in Research: A National Research Trial Exemplifying Effective Collaboration With American Indian Nations and the Indian Health Service

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