Genetic Research in Native Communities

Abstract

People are living longer because of advances made through biomedical research. The challenge in genetic research on indigenous peoples is that it raises a complex range of legal, ethical, social, spiritual, and political issues. The current research paradigm is one of paternalism and biocolonialism. Such was the case of the Havasupai, who believed their blood samples were to be solely used for their collective benefit and well-being, and Native Hawaiians, who are opposed to genetically modified taro. Pertinent questions that should be considered before conducting research with and amongst Native communities include: Is there informed consent or the need for re-consent? Is cultural knowledge respected? Are indigenous beliefs, values, and practices taken into account? Is there potential for group harm? Is there accountability to community? Establishing a community Institutional Review Board may be the most effective means toward achieving equal and ethical treatment in population/group-based research. Research should be about ethically rigorous processes and effectively tailored interventions that address community needs, interests, and values.

Community dissemination and genetic research: Moving beyond results reporting

“…Communities may lack linguistic or conceptual equivalents for technical terms such as “penetrance;” and certain words, such as “mutation,” carry negative connotations in everyday language [Condit et al, 2004]. In some cases, genetic research may simply not be a priority for the community [James and Starks, 2011] or may raise concerns over misuse or misappropriation [Foster et al, 1999; Santos, 2008]. …”

Engaging Pacific Islanders in Research: Community Recommendations

“…The loss of land and cultural practices, drastic changes in dietary patterns, and the lack of access to educational and socioeconomic opportunities that are connected with NHPI cultural values 13–16 continues to contribute to health disparities that are among the worst in the nation. 17–20 Unethical research in these communities includes the well-documented experimentation done without consent to Hansen’s disease patients in Kalaupapa, Hawai‘i 21 and nuclear bomb testing on an inhabited Pacific Ocean atoll. 22 These studies, as well as other less known research, have led to exploitation and harmful stereotyping, compounding suspicion among community members toward the research enterprise.…”

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

“…The research on schizophrenia, inbreeding, and population migration theories did not benefit their nation in any way and instead subjected them to stigma and emotional and mental anguish (Drabiak-Syed, 2010). For example, the research on migration suggested that the Havasupai migrated from a geographic location inconsistent with their worldview (Santos, 2008). Furthermore, the findings from the diabetes testing hypothesized that the high prevalence of diabetes was a result of a nutrient deficiency in pregnancy (Rubin, 2004).…”

“…Furthermore, the findings from the diabetes testing hypothesized that the high prevalence of diabetes was a result of a nutrient deficiency in pregnancy (Rubin, 2004). No intervention efforts were made as a result of these findings, indicating that the best interest of the Havasupai Nation was not considered (Santos, 2008). People with diabetes from the Havasupai Nation now have to be treated with dialysis because they did not seek medical treatment in time due to the fear and mistrust that occurred as a result of this project (Boomersbach, 2008).…”

“…Santos (2008) notes that although there are conversations between researchers, scientists, and bioethicists surrounding the ethics, benefits, and risks of research in Indigenous communities, Indigenous people are rarely a part of these discussions (Santos, 2008). Their perspectives, even when heard, are often ignored because their concerns often require more time, consideration, and effort, and do not align with the structure of the Euro-American research tradition (Santos, 2008). 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.…”