Nearly two decades ago, the Havasupai tribe, a Native community that has an overwhelming rate of type 2 diabetes, agreed to participate in what they understood to be a diabetes research study being conducted by researchers at Arizona State University. As is common scientific practice, however, secondary analysis was done with the DNA samples to investigate schizophrenia, evolutionary biology, inbreeding, and human migration theories. In 2004, the Havasupai filed lawsuits against ASU, accusing its researchers of taking tribal members’ blood without informed consent, violating federal laws on human subject studies and—more importantly—tribal sovereignty. The researchers denied all charges on the grounds that the participants had signed broad consents (Dalton 2004). On April 20, 2010, the two lawsuits brought by the tribal government and its members were settled for only a fraction of the original damages sought.
This case, in which de-identified samples were shared in compliance with current research regulations, indicates that there is still a need for research practices that promote trustworthiness and respect for Native participants. A Havasupai tribal council member commented: “I’m not against scientific research . . . I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission” (Harmon 2010). To promote such trustworthiness and respect, lessons need to be learned from the Havasupai example. Partnerships between researchers and tribal communities have historically functioned with a severe imbalance of power and privilege, allowing researchers a troublingly broad interpretation of the terms. This is evidenced by the attitude of the principal investigator in the Havasupai diabetes study, who claimed “that she and ASU were at liberty, given the wording of the document, to explore any type of disease or behavioral health problem among the Havasupai” (Hart and Sobraske 2003). By learning from the Havasupai study, we can begin to address the ideologies and paradigms that inform the way research and partnerships are carried out.
To decolonize research practices, a critical review of research missteps and misconduct is needed. Every action of oppression requires a reaction. We need to probe these problematic cases deeply in order to assist researchers in understanding why misconduct and missteps can neither be ignored nor simply wished away (Wilson 2009; Smith 2012). One must be conscious of how power should be shared, not hoarded or abused, to prevent aggravating and escalating social justice issues within disadvantaged communities. We need to critique not just what is said but what is not said, to uncover the concealed power that shapes research relationships. Consciously or not, some researchers dismiss this glaring reality and seem perfectly content to use existing, compromising approaches to building trust despite past missteps. Those who are not part of historically disadvantaged populations often fail to grasp the severity of the problem for those who are. And, as evidenced by another highly publicized example—the case of Henrietta Lacks, a poor Black woman from whom a cell sample was taken without permission or knowledge and used to develop the HeLa cell line, which is still used in medical research (Skloot 2010)—Native American communities are not the only unwitting contributors to the research agendas of others.
The missteps of research practices clearly suggest that the benefits of scientific discovery have been prioritized over the wishes of the American Indian and African American individuals from whom samples were collected, an ethically questionable practice. The participants and family members, however, also see these studies as serving the interests of the researcher rather than the loftier interest of advancing science. In other words, the Havasupai case is yet another example of those with greater power failing to demonstrate respect for less powerful participants.
Given the power of written and spoken words—specifically, the use of written and spoken words to obtain research consent—the aim of a decolonized approach is to support victims of oppression and change the power relationships that can be concealed in the legalese of a broadly construed consent form. Such a decolonized practice challenges us to view words as having significant meaning in particular historical, social, and political contexts. Decolonized practice reveals and values the words of those who are not in power, and it exposes how power relations are used to promote hidden agendas and motives that serve self-interests. The key is not simply to explain how the complexities of race and social positions operate but to decolonize research in ways that empower participants. At some point, intentions have to match results.
Michelle R. Montgomery is assistant professor at the University of Washington, Tacoma, in the School of Interdisciplinary Arts & Sciences, American Indian Studies, and Ethnic, Gender & Labor Studies. An American Indian (Haliwa Saponi/Eastern Band Cherokee) with more than ten years of cultural and traditional values-based stakeholders’ experience in teaching, administering, and developing educational programs, Montgomery focuses her research on action-based aims to put transformed, decolonized educational and research methods into practice through critical race theory, tribal critical race theory, indigenous cultural autonomy, indigenous identity politics, and environmental ethics connected to land-based indigenous identities. She is the author of the upcoming Identity Politics of Difference: The Mixed-Race American Indian Experience.