Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers

Abstract

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.

Data as a Strategic Resource: Self-determination, Governance, and the Data Challenge for Indigenous Nations in the United States

“…Mistrust also stems from lack of community voice in the data collection process resulting from research conducted and policies made by "outsiders" or non-community members (Burhansstipanov & Dresser, 1994;Cochran et al, 2008;Israel, Eng, Schulz, & Parker, 2005;Kunitz, 1996;Pacheco et al, 2013;Roubideaux, 2002). Often researchers and policymakers failed to honor commitments related to projects and interventions.…”

Culturally Responsive Diabetes Interventions within the Context of American Indian and Alaska Native Health

“…It is part of the essence of a person" (Petit, 1998, as cited by Santos, 2008, p. 4). The Havasupai believe that when an individual dies, they cannot pass on to the next world until they have all of their possessions (Pacheco et al, 2013). Therefore, the proper return of their blood samples was extremely significant.…”

“…According to the study published by Garrison and Cho (2013), researchers have yet to learn important lessons from the Havasupai case and without successful research ethics education, history is likely to repeat itself. It is imperative that researchers learn about culturally appropriate research methods in order to maximize the beneficial outcome for participants and prevent unintentional harm (Pacheco et al, 2013).…”

“…It is important for researchers and healthcare workers to learn about the immense harm perpetrated by both the medical and research community because AI/ANs do not typically differentiate between the two; these instances are seen as being perpetuated by the same people (Pacheco et al,2013). This means that mistrust is deep-rooted and researchers must take extra care when moving forward.…”

“…This means that mistrust is deep-rooted and researchers must take extra care when moving forward. The Center for American Indian Community Health (CAICH) has taken the steps necessary to avoid future harm in researcher practices by educating AIs about their rights, empowering them to assert those rights, and by protecting them from unethical research (Pacheco et al, 2013). When working with people of color, researchers will often avoid talking about previous abuses (Pacheco et al, 2013).…”