Believe What You Like But Know What You Must

People are free to be consumed with contemplating their existence, their origins, the origins of the universe, supreme beings, controllers of destiny or anything else. But solving "the Great Mystery" is neither a requirement of being Ohnkwe Ohnwe nor does it provide a path to righteousness. I maintain that spirituality does not require faith or the leaps that faith requires but rather awareness. If it helps to believe that "God has a plan" and we just must have faith that "He" knows what "He" is doing, then walk that path. My interest is in taking the mystery out of life by pointing to the obvious that is ignored everyday in the midst of fanatical ideology and the sometimes not too subtle influences of promoting beliefs over knowledge. I have said it before: “beliefs are what you are told, knowledge is what you experience”. I support a culture that prepares us to receive knowledge and to live a life with purpose. I am certainly not suggesting there is only one way to do that.

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Wednesday, August 25, 2010

50 Years of Questionable University Health Research Practices on the Cattaraugus and Allegany Reservations of the Seneca Nation of Indians

By Rodney C. Haring, PhD.
Research in Native Communities

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.
Research in Seneca Country: Circa. 1960
The history of questionable health research practices on the reservations of the Seneca Nation of Indians started nearly five decades ago by the State University of New York at Buffalo (SUNY). In fact, the most notable of these health research studies included early genetics studies, studies on the blood groups of Seneca Indians, in-breeding among Seneca Indians, and potential migration patterns, all based on blood samples taken from Seneca Indians on the Cattaraugus Reservation with many occurring via home visits on Seneca Nation lands (Doeblin & Mohn, 1967).
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?
Research in Seneca Country: New Studies using Archived Seneca Members Data
More recent health research studies conducted included investigations by Roswell Cancer Institute, an affiliate research organization of SUNY Buffalo. UB affiliated researchers received initial approval from the Seneca Nation to produce health research results by reviewing Seneca Nation health data between 1955-1984 relating to potential life lost factors based on 924 death certificates of Seneca Peoples (Mahoney, Michalek, Cummings, Hanley, Snyder, 1989). This original article was followed by a subsequent publication titled, Mortality patterns among a Native American population in New York State found in the New York State Journal of Medicine (Michalek, Mahoney, Cummings, Hanley, Snyder, 1989).The findings and articles indicated that UB affiliate researchers worked with the Seneca Nation but does not describe in detail how information provided by the SNI Health Center is protected or that the project had SNI council approvals and protections regarding the continued use of health data provided by the Seneca Nation of Indians.
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.
Research in Seneca Country: The last decade (2000 to 2010)
More recently a health related research project conducted by SUNY Buffalo without Seneca Nation approval included an investigation of Seneca Nation children’s asthma and health behaviors. This study, The prevalence of asthma in children of elementary school age in Western New York (Lewebuga-Wukasa & Dun-Georgiou, 2000) published in the Journal of Urban Health was conducted in conjunction with Gowanda Central school systems. SUNY Buffalo courted Seneca children at Gowanda Central elementary school systems, sent consent forms to Seneca reservation homes, and Seneca parents residing on reservation had the opportunity for enrolling their children in the SUNY Buffalo health study. This was a backdoor mechanism that SUNY Buffalo utilized to enter Seneca Nation lands to conduct health research without Seneca Nation approval, oversight, or Seneca Nation Council approval.
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.
A Call for Action
From the early 1950s to today, no other university working within the Seneca Nation boundaries has conducted as many questionable research practices then SUNY Buffalo. These collections of unethical health research practices in Seneca Country are clear-cut documented cases which provide probable cause for jurisdictional oversight by the Seneca Nation on behalf of the Nation’s community members and family’s in which the government is in existence to protect.
Summary
In today’s Seneca societies health research is important. Health research when conducted properly and respectfully has the ability to gain insight in directions of the Seneca Nation’s choosing. Health research provides answers, results, and guidance for our future generations. Further, health research and evaluation helps existing programs discover if their program are effective or ineffective.
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.

4 comments:

Marilyn Anderson said...

I agree with your comments regarding use of health information and some of the tactics used by researchers. I inititated a petition against researchers who were going to dig up bones, etc. At that time Jack Kemp was most instrumental in putting a stop to this project. I do take exception to your comments about the work done by Art Michalek. He followed the proper protocols established by the Nation and was closely monitored throughout the process. He presented to council and the community. Tribal members were involved in oversight of his work and he has always been most respectful of our people. I believe that you owe him an apology and I would be more than happy to set up a meeting with him and you so that you can have a fully informed opinion. Thank you.

Rodney Haring said...

Thank you for your review of the commentary. The information presented around the Roswell Project was not focused on the individual work done by Art Michalek. Roswell did follow the Nation's protocol and worked closely with the Nation Health Board and community. The potential concerns revolve around the continued use of the data for ongoing presentation and journal article publications without Nation review, oversight, and approval. From all the studies found in this review, the Roswell Study, by far was the most sound community based participatory project. That being said, the Seneca Nation needs to continually improve their research protocol to include the diverse range of research that occurs on Nation lands and within the community. I would happy to meet Art Michalek. As a fellow through the MAYO clinic, our fields of cancer related research intertwine. A good forum in which we hope that the Roswell Project and other local research projects occuring in the areas of the Haudesnoaunee may consider presenting is the upcoming www.nativeresearchnetwork.org Conference occuring end of June to July 1, 2011 at the Niagara Falls Conference Center, Niagara Falls, New York. This conference brings together multiple tribal communities, tribal colleges, Native students, Native researchers, and federal departments to discuss these very important issues.

Marilyn Anderson said...

I am not a regular "user" of blogs and so am just now responding to your comments. I am glad to know that Dr. Michalek's work was not in question, but rather the on-going use of data. Instead of me acting as an interpreter why don't you contact Dr. Michalek directly at Roswell? I am sure that you both share many of the same philosophies and it would be a credit to you to establish such a relationship. Nyah weh.

Marilyn Anderson said...

I am not a regular visitor to blogs, etc. and so am now just responding to your comments. I am glad to hear that you were not questioning Dr. Michalek's work but rather the continuing use of data. Rather than have me serve as an intermediary I would suggest that you contact Dr. Michalek directly at Roswell to discuss your concerns. I am sure that you will find that you have similar philosophies and will be able to learn more about his approvals from the SNI. It would be a credit to you to initiate such a dialogue. Thank you.