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

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          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.

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          Most cited references63

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          The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

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            Moving forward: breaking the cycle of mistrust between American Indians and researchers.

            American Indians (AIs) have some of the poorest documented health outcomes of any racial/ethnic group. Research plays a vital role in addressing these health disparities. Historical and recent instances of unethical research, specifically the Havasupai diabetes project, have generated mistrust in AI communities. To address the concerns about unethical research held by some AIs in the Heartland (Midwest), the Center for American Indian Community Health (CAICH) has launched a series of efforts to inform AIs about research participants' rights. CAICH educates health researchers about the importance of learning and respecting a community's history, culture, values, and wishes when engaging in research with that community. Through community-based participatory research, CAICH is also empowering AIs to assert their rights as research participants.
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              A nationwide population-based study identifying health disparities between American Indians/Alaska Natives and the general populations living in select urban counties.

              Despite their increasing numbers, little is known about the health of American Indians/Alaska Natives living in urban areas. We examined the health status of American Indian/Alaska Native populations served by 34 federally funded urban Indian health organizations. We analyzed US census data and vital statistics data for the period 1990 to 2000. Disparities were revealed in socioeconomic, maternal and child health, and mortality indicators between American Indians/Alaska Natives and the general populations in urban Indian health organization service areas and nationwide. American Indians/Alaska Natives were approximately twice as likely as these general populations to be poor, to be unemployed, and to not have a college degree. Similar differences were observed in births among mothers who received late or no prenatal care or consumed alcohol and in mortality attributed to sudden infant death syndrome, chronic liver disease, and alcohol consumption. We found health disparities between American Indians/Alaska Natives and the general populations living in selected urban areas and nationwide. Such disparities can be addressed through improvements in health care access, high-quality data collection, and policy initiatives designed to provide sufficient resources and a more unified vision of the health of urban American Indians/Alaska Natives.
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                Author and article information

                Journal
                101640056
                42990
                Soc Sci (Basel)
                Soc Sci (Basel)
                Social sciences (Basel, Switzerland)
                2076-0760
                22 May 2019
                20 April 2019
                April 2019
                28 August 2019
                : 8
                : 4
                : 127
                Affiliations
                [1 ]Southcentral Foundation Research Department, 4085 Tudor Centre Dr., Anchorage, AK 99508, USA; (R.B.W.); (V.Y.H.)
                [2 ]Chickasaw Nation Department of Health, Research and Public Health Division, 1921 Stonecipher Boulevard, Ada, OK 74820, USA;
                [3 ]Department of Anthropology, University of Oklahoma, 455 West Lindsey, Dale Hall Tower 521, Norman, OK 73019, USA; (T.S.K.); (P.G.S.)
                Author notes

                Author Contributions: J.A.B. performed the analysis prepared original draft and incorporated writing team edits. B.S. contributed to the discussion and provided revisions to the paper. R.B.W. performed scoping review on PR, contributed to method text and provided revisions to manuscript. T.S.K. performed scoping review on PR and provided revisions to manuscript. P.G.S. acquired funding, provided revisions to manuscript. V.Y.H. conceived the idea for the scoping review and secondary analysis, provided supervision of project and revisions to manuscript.

                [* ]Correspondence: jbeans@ 123456scf.cc ; Tel.: +1-907-729-4333
                Author information
                http://orcid.org/0000-0003-4363-9763
                http://orcid.org/0000-0002-4234-9141
                Article
                NIHMS1030673
                10.3390/socsci8040127
                6713452
                31463160
                d35fe1cf-be77-4909-a305-d8019a3c6c1e

                This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

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                indians,north american,alaska native,ethics,research,participatory research,tribal sovereignty,scoping review,indigenous

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