Cultural appropriateness is an ethical factor that underlies research with any group. However, Native Peoples have structures of belief, customs, and historical experiences vastly different from that of researchers trained in mainstream universities. Special care needs to be taken when these same researchers attempt to apply methodologies to Native peoples and Native communities.
It is often the case that researchers may be viewed negatively in Native communities. Native people have often been exploited, not just by governments and corporations, but also by researchers who have come in from the outside to study Native people. Often, Native communities have not been informed of the study findings nor experienced any benefits of the research. Other instances include tribal information being lost or used in an unethical manner.
Another study, Diabetes and hyperglycemia in Seneca Indians (Doeblin, Evans, Ingall, Dowling, Chilcote, Elsea, Bannersman, 1969) that published in Human Heredity followed Doeblin and Mohn (1967) study, blood groups of the Seneca Indians, published in the American Journal of Human Genetics, stated that Doeblin’s team and SUNY UB researchers visited mostly homes on the Cattaraugus Reservation and drew venous blood samples for research purposes. The blood samples in this study indicated that blood was taken from 266 Seneca peoples on Seneca reservation lands. This study also went on to examine fertility rates among Seneca women. A subsequent study, Diabetes in the Seneca Indians: Plasma insulin responses to oral carbohydrate published in Diabetes (Frohman, Doeblin & Emerling, 1969) further shows lack of coordination between the SUNY Buffalo and the Seneca Nation of Indians tribal government or health departments for ongoing health research practices. Yet another SUNY Buffalo research team further published a report without article description of Seneca Nation of Indians oversight, guidance, and approval in Public Health Reports (1969). Elsea, Partridge, and Neter (1967) conducted research on Seneca lands by collecting fecal samples by rectal swabs and blood specimen collection via home visits at Seneca member house holds on the Cattaraugus Indian Reservation.
Methodologically, all of these early SUNY Buffalo studies lack detail on Seneca Nation oversight, blood sample protection and return, and potential harms produced by using blood sample which looked at in-breeding, genetics, the geographic origins of Seneca Peoples, diabetes, and fertility. Similar to the questionable research practices conducted on Seneca Nation tribal members in reservation lands, the Havasupai Nation, a small Native American tribe located in the Grand Canyon, had given DNA samples to university researchers starting in 1990 in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. The Havasupai later learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.
Acknowledging a desire to “remedy the wrong that was done,” Arizona State University’s Board of Regents agreed to pay $700,000 to 41 of the tribe’s members, return the 151 blood samples and provide other forms of assistance to the Havasupai Nation. The case raises the question of whether University scientists had taken advantage of a vulnerable population for a university eager to cast itself as a center for American Indian studies and research.
Where are Seneca ancestors’ blood stored today? Has the SUNY Buffalo used Seneca blood samples for genetic testing? Can the 266 Seneca blood samples, over 100 more samples than the Havasupai Nation tribal member case, be reclaimed and properly laid to rest using Native American Graves and Protection and Repatriation Act?
The continued use of Seneca Nation health data for publication and presentation purposes are highlighted by further use by a different set of authors. This included a published study found in the American Journal of Epidemiology (Mahoney, Michalek, Cummings, Nasca, Emrich, 1989). This article titled, Mortality in a northeastern Native American cohort 1955-1984 reported using the same data set provided by the Seneca Nation of Indians tribal rolls. Recently this same information which included the Seneca Nation tribal rolls data and Seneca Nation death certificate information was republished on-line as public information in 2006 .
It may be the case that Roswell Cancer Institute, a SUNY UB affiliate, continues to present findings at conferences across the country (without SNI oversight) and publish variations of the Seneca Nation health data in journals which may not be approved by the Seneca Nation. These questionable health research practices have risk and harm factors to Seneca Nation members and community. This is represented by the ability of these publically released statistics to influence health insurance providers serving Seneca Members, life insurance premiums and coverage based on Seneca specific statistics including cancer treatments, homicide rates, and motor-vehicle insurance rates related to mortality rates found using certificates of deceased Seneca members.
This study in particular released Seneca Nation community member health data. In comparison, the findings have the ability to influence insurance rate premiums to Seneca Nation members. Specifically, Seneca community health results related to asthma, medication, and other concerns including “house hold triggers” which included researched items such as commercial tobacco and rodent/cockroach prevalence in Seneca homes.
The Seneca Nation in relation to health research has the capability of protecting tribal intellectual property and knowledge at both the community level and for members that reside in the Territories of the Seneca Nation. The Seneca Nation has the ability to guide research that improves community health in respectful ways, yet staying within the boundaries of scientific principles. Finally, the Seneca Nation has the right and duty, much like the Havasupai Nation, to reclaim our ancestors’ blood specimens for proper burial, stop potential DNA/genetics research, in-breeding investigations, related biological research from past blood samples/rectal swap collections and to proceed with legal action against the University for unethical research practices dating back nearly five decades.