Lessons Learned from Community-Based Participatory Research in Indian Country

Abstract

The purpose of this article is to share lessons learned from implementing community-based participatory research (CBPR) in Indian Country that may be generalizable to other medically underserved communities. CBPR is currently included in multiple grant announcements by the National Institute of Health and Centers for Disease Control and Prevention, but information about this methodology vs traditional research methodology is often misleading. This article addresses some common mistakes made by academic research institutes by sharing what we have learned about how CBPR can be implemented in a respectful manner. The majority of tribal Nations prefer, if not mandate, that CBPR be used in most proposed studies involving their communities today.

Sharing results from complex disease genetics studies: a community based participatory research approach

“…The reduced number of founders, historical bottlenecks, as well as the small population size, and limited admixture should reduce the number of risk alleles contributing to complex disorders like obesity (16,17). Moreover, the homogenous environment in which our participants reside will facilitate the control of intervening environmental factors ( 8). Family member participation is facilitated by the fact that the communities we work in are generally less than 500 people in size and many individuals in nearby communities are related to one another.…”

“…Nevertheless, in a community-based participatory research model, it is necessary to communicate some form of study progress back to participants, and there may be several reasons to do so, including the fact that relationships between researchers and participants are strengthened ( 0), participants' understanding of genetics is improved ( ), and trust in the research process may be enhanced if participants are informed of the study outcomes and their contribution to public health (8).…”

“…There are many reasons why Native American communities are increasingly concerned about participating in genetics research projects (8). Some of the concerns raised when we began to work with Yup'ik Eskimo participants included being over-researched, not hearing from research scientists that previously initiated projects in their communities, fear of testing for drugs, apprehension about the potential for blood sample use that was not approved in the original study design, and potential for exclusion from medical care or possible stigmatization if a particular disease or mutation was discovered that might be common in the Yup'ik community (group harm).…”

“…Indeed, there are active discussions throughout the scientific community in regard to ethics of populationbased genetics research (5,6), including how genetics studies should be developed in Native communities (7,8), how family members should be recruited into genetics studies (9, 0), as well as how, and when, genetics study results should be reported back to participants and/or communities ( , ). In regard to sharing genetics results with participants, the National Bioethics Advisory Commission (NBAC) recommends that genetics results should not be disclosed to participants unless the results have been confirmed; the findings have significant health implications, and treatment, as well as medical counseling is available ( ).…”

The practical application of community-based participatory research in Greenland: Initial experiences of the Greenland sexual health study

“…While this may appear as a monetary savings for the research project, it does not adhere to CBPR practices. In Canada and the United States, CBPR projects rarely succeed if the projects have relied on volunteerism from community members (13). Additionally, in the course of conducting the initial study in Nuuk, some of the research participants stated that they would not participate in the in-depth interviews unless they received some compensation for their time.…”