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

Author:

Beans Julie A.ORCID,Saunkeah Bobby,Woodbury R. Brian,Ketchum Terry S.,Spicer Paul G.,Hiratsuka Vanessa Y.ORCID

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.

Funder

National Human Genome Research Institute

National Institute of General Medical Sciences

Publisher

MDPI AG

Subject

General Social Sciences

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