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"Tragedy in the Amazon: Yanomami Voices, Academic Controversy and the Ethics of Research"
Cornell University, Ithaca, NY, April 5-7, 2002
(co-sponsored by the Latin American Studies Program of Cornell University and the Center for Latin American Studies of the University of Pittsburgh)
Billie Jean Isbell (Cornell U), moderator
Presentation of the Issues
Terry Collins (Carnegie Mellon U)
Terence Turner (Cornell U)
Jose Seripino Ianomami (SUYAO - Association of Yanomami Cooperatives of the Upper Orinoco of Venezuela)
Toto Yanomami (Tootobi community, Brazil)
Davi Kopenawa Yanomami (Demini community, Brazil)
Anthropologists, Activists, NGOs, Journalists
David Maybury-Lewis (Cultural Survival)
Leda Martins (U Montana)
Maria Josefina de Oliveira (Commission Pro-Yanomami, Brazil)
Patrick Tierney (journalist)
Jesus Ignacio Cardozo (Venezuelan Commission on the Investigation of the Injuries Suffered by the Indigenous Peoples of the Upper Orinoco)
Native American Speakers
Mary Fadden Arquette (Akwesasne Task Force on the Environment)
Katsi Cook (Akwesasne Task Force on the Environment)
Leslie Sponsel (U Hawai`i)
Patrick Tierney produced a significant book after a substantial amount of field and library research conducted over more than a decade. One of the most serious violations of professional ethics and human rights he revealed was the experimental injection of radioisotopes into human subjects without informed consent. The treatment of the Yanomami by the researchers was legitimized by a doctrine of contempt including the image of the Yanomami as "the fierce people." Anthropologists should pursue an impartial investigation of this and other matters and then fully disclose to the public their findings; seek appropriate compensation for the Yanomami; revise course materials; develop a new code of ethics emphasizing human rights; and work to help protect the Yanomami from external threats.
The current controversy could be a turning point for a better future for the Yanomami and anthropology, this after some three decades of their mistreatment by some anthropologists as revealed by Patrick Tierney. The field research of James Neel on human genetics was influenced by his ideological and theoretical concerns, including the idea that headmen are more likely to be polygynous and that this would have eugenic effects. The Yanomami were treated more like genetic processes than human beings as the result of the dehumanizing evolutionist thinking of Neel. Despite knowing in advance about the spreading measles epidemic and then actually witnessing it in the field, Neel was unwilling to modify his previously planned schedule of research activities to the extent necessary to provide more effective medical help. The Yanomami were misinformed that the blood and other biological specimens taken from them would help treat their health problems. The researchers never delivered on this promise. The Yanomami were never told that their blood would be kept for decades for continuing research. Neel's defenders from genetics, sociobiology, and evolutionary psychology have yet to acknowledge any violations of scientific and medical ethics by Neel and others. This is also a serious concern for the public because of the federal funding of the research.
At the very time when the Yanomami and NGOs working on their behalf were trying to secure a federal reserve to end the invasion of gold miners into their territory, Napoleon Chagnon wrote articles and gave interviews to the press including in Brazil which in effect seriously undermined the struggle for a reserve. Chagnon never spoke out against the use or misuse of his ideas. However, at the same time he spoke out against the individuals and organizations who were trying to defend the human rights of the Yanomami such as Davi Kopenawa Yanomami, CCPY (Pro-Yanomami Commission), and the Salesian missionaries.
Blood and other biological materials were extracted from the Yanomami in Brazil as well as Venezuela by James Neel and others without informed consent. From our perspective, blood is a sacred vital force from the creator and not something to be studied other than for the sole purposes of direct health care. The blood and other biological materials should be returned to the Yanomami for proper ritual treatment.
Davi Kopenawa Yanomami
The blood was taken from the Yanomami without the permission of the Brazilian government. No one should give away, trade, or sell Yanomami blood. The blood has to be returned to the Yanomami. Yanomami need education and health assistance so that they will not be deceived by researchers in the future.
Jose Seripino Ianomami
Our most important concerns are first health and second education. Yanomami in Venezuela have not yet decided on the issue of the blood, but may eventually draft a formal document after discussing the issue among themselves and consulting with government officials. One thing we are thinking about is requesting monetary compensation to be channeled into a health fund. Yanomami did not really understand why the blood was being taken, individuals were simply paid with trade goods.
Sea, an independent researcher and writer, read a letter from Professor Kenneth Weiss at Pennsylvania State University where the largest collection of blood samples is maintained, some 3,000. Weiss emphasized that there are major differences between the researchers who originally collected the blood and those who currently maintain the collection. James Neel distributed the samples to several institutions (Pennsylvania State University, Emory University, and the National Cancer Institute as well as the University of Michigan) so that the samples would not be lost to science. Weiss agreed to receive the samples because they are unique and irreplaceable, and out of respect for the Yanomami. However, he has placed a moratorium on any research with the samples until the Yanomami make a decision on the issue. Weiss asserts that the samples do not have any direct application for Yanomami health. As far as Weiss knows, there was no sale or profit from the blood.
Sea himself outlined some options for the treatment of the blood samples, including return to the Yanomami, destruction by the current institutions holding them, or transfer to other institutions following the wishes of the Yanomami. (The vials are numbered and it would be possible to identify the villages, but more difficult if possible at all to identify the individuals).
This controversy is, among other things, a struggle between "big science" and anthropological understanding. Part of the problem is the image of anthropology in the profession, public, and science, especially "hard science." There is a discrepancy between the individual as a scientist and as a decent human being.
Napoleon Chagnon systematically libeled the Yanomami as "the fierce people." Furthermore, they were not simply described as "the fierce people," but as fiercer than any other people. Any serious comparative analysis would reject this lie. Tierney has exposed a shocking record of dishonesty and ill treatment as well as libel, such as in the breaking of name taboos which is horribly unethical. The dehumanization of the Yanomami is shocking, but so is the inability of the American Anthropological Association to do anything about it. In contrast, the Brazilian Anthropological Association had no difficulty in judging Chagnon's behavior, perhaps in part because it is much more involved in social science than in big science. Above all we must insist on the responsibility of the researcher to the people being investigated.
This doctrine of contempt is not limited to James Neel and Chagnon, but far more widespread in science. Furthermore, it is the essence of racism, ethnocentrism, and ethnic cleansing. The work of Cultural Survival is countering such negative forces in the world, and helping to demonstrate that cultural pluralism is not a threat to the state. Multiculturalism rather than assimilation is a new trend in state policies, although it is uncertain exactly what this means. Likewise, most racist elements in science are no longer respectable and at best marginal. Still, we need a fundamental change in thinking and practice in science.
The issue of the blood samples is not limited to the late 1960s, but also occurred in the 1970s, 1980s, and 1990s. Yet the AAA Task Force on El Dorado appears to have a total disregard for this issue. The Yanomami were misinformed, the blood was used for science and not for their health care. Some meaningful action has to be taken to resolve this issue.
Maria Josefine de Oliveira
Portions of a statement by Bruce Albert of CCPY (Pro-Yanomami Commission) were read.
In the Preliminary Report of the AAA Task Force on El Dorado, Trudy Turner completely ignores the report of the investigation made in Brazil and also the protests of the Yanomami themselves. That report revealed the following: possible experimentation comparing Yanomami who were given immunoglobulin during measles vaccinations with those who were not; inadequate preparation in planning the field research in spite of already knowing about the spreading measles epidemic; and disregard for informed consent, the Yanomami being bribed instead with trade goods. The stock piling of the blood of deceased Yanomami by foreigners in a foreign land is a moral and cultural affront to the Yanomami. Also it is not clear whether Yanomami blood is being used for any current research including in the Human Genome Project. An independent international committee on bioethics should investigate such matters including the connection with the Atomic Energy Commission.
It was also emphasized that during the period of the last three decades in which the Yanomami have suffered many health problems, not once did James Neel and/or Napoleon Chagnon develop any project for medical assistance.
The Inuit have been compensated for the injection of radioiodine. The Yanomami case is even worse since other radioisotopes were given and it is not clear what some of them were. However, James Neel admits in a letter to Napoleon Chagnon that there was cytogenic damage to Yanomami in Mavaca.
The nutritional status, parasite burden, and immunity level of the Yanomami are critical to their health and survival, yet Chagnon portrayed them as relatively healthy with adequate nutrition, especially the more remote villages. [This relates to his position on the animal protein hypothesis]. However, the Yanomami are very susceptible to the common cold and can easily suffer complications. Nevertheless, Neel, a medical doctor, was himself sick with an upper respiratory infection when he entered the area. Moreover, in every case measles broke out after the expedition arrived because some of its members were carriers. Also people died after each filming episode.
In addition, Chagnon's characterization of the Yanomami as "the fierce people" was an obstacle to campaigns on behalf of their human rights such as the initiatives by Survival International of London. The famous British social anthropologist Sir Edmund Leach refused to lend his support to a Survival International campaign. Likewise the British government rejected proposals from Survival International. Both saw the supposed chronic endemic violence of the Yanomami as a barrier to any assistance.
Mary Fadden Arquette
Research can be used to create and maintain inequality as well as delay real practical corrective action. Indigenous communities need to design their own protocols for research around issues that they want addressed and also to become researchers themselves. Another important concern is the problem of maintaining cultural identity and transmitting it to future generations.
Jose Ignacio Cardozo
A major paradox in this controversy is the silence of Venezuelans, even though almost all of the activities in question took place in Venezuela. This is in sharp contrast to the Brazilian response to the controversy. Nevertheless, in Venezuela some practical initiatives have been undertaken to assist the Yanomami since the 1980s. Some of the major developments include a conference on Yanomami attended by 11 Yanomami in 1991 in which they talked directly to government officials; a National Park and Biosphere Reserve that makes the Yanomami the most protected indigenous population in the whole country; a video project for Yanomami to record their own culture; and last November a National Yanomami Congress held within their territory and attended by some 700 Yanomami. The agenda of that congress was devoted to health, education, territorial control, and environmental conservation, not the issues involved in this controversy. An invitation to the Brazilian Yanomami to attend was discontinued owing to political pressures from elements of the national society.
No other scandalous controversy in the entire 150-year history of anthropology begins to approach this one in scale of complexity, scope, and ugliness. However, this scandalous controversy also presents an unprecedented opportunity to improve anthropology and its relationship with communities who host research. Anthropology can become more responsible, relevant, and responsive as well as engage in more genuine reciprocity with the people who host research. Although basic research is at the foundation of any applied or advocacy work, far more emphasis needs to be placed on the practical concerns of the host communities. This is very different from the kind of research that triggered this scandalous controversy, research which suffers from egotism, careerism, scientism, and evolutionism carried to such an extreme that it was not merely abnormal but even pathological. Individuals may argue over the details of the activities of James Neel and others during the 1968 measles epidemic, but one simple undeniable fact holds--- time spent in the collection of scientific data was time not spent on providing medical treatment to sick and dying Yanomami in the midst of a medical emergency, this despite the presence of three medical doctors on the research team who knew in advance about the spreading epidemic before entering the field. How many more lives could have been saved if research had been temporarily suspended and full attention had been given to medical care?
Future research with the Yanomami needs to pay far more attention to promoting their survival, welfare, self-determination and other human rights. From comparative studies such as those by John Bodley and Peter Elsass we already know the conditions for cultural survival of indigenous societies. Future research also needs to be more strongly motivated and guided by professional ethics and also be far more sensitive to Yanomami ethics as well (e.g., name taboos). Here we do not have to reinvent the wheel, standards and guidelines for research ethics with human subjects have been developing at least since the 1946 Nuremberg Code over concerns for the practice of science without conscience. (Also see the Helsinki Declaration of 1964, Belmont Report of 1979, Barbados Declaration of 1971, etc.) In addition, well developed methods of needs assessment and collaborative or participatory research can be applied to Yanomami concerns for health, education, land and resource rights, and so on. The pivotal issue is self-determination, the most fundamental of all human rights.
In this unprecedented scandalous controversy we need to keep focused on positive and constructive contributions as well as keep our priorities straight. Positive and constructive responses so far include this conference at Cornell; the web sites developed by Douglas Hume (http://www.anth.uconn.edu/gradstudents/dhume) and Robert Borofsky (http://www.publicanthropology.org) as well as the roundtable on Darkness in El Dorado; the University of Michigan lecture series (Brian Ferguson, Alcida Ramos, and Terry Turner); and the Brazilian investigations and documents of Bruce Albert and others from CCPY (http://www.proyanomami.org.br). However, unfortunately, the Preliminary Report of the AAA Task Force on Darkness El Dorado is not so positive and constructive, but a disgrace and insult to the AAA, profession, and Yanomami. We can only hope that their final report will be far more informed, thorough, critical, and impartial. At present it is itself a scandal and unethical.
* The above summary was prepared from the notes I took during the conference. Only the presentations by invited speakers are summarized, not the open discussions. The summary of my comments as one of the speakers is longer since the full text is available. I apologize in advance if there are any deficiencies or inaccuracies in my summary of the conference.
Dr. Leslie E. Sponsel, Professor
Department of Anthropology
University of Hawai`i
Honolulu, HI 96822-2223 USA
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