Internet Source: Public Anthropology: Engaging Ideas, May 27th 2001
Source URL (Archive.org): http://www.publicanthropology.org/Journals/Engaging-Ideas/RT(YANO)/Albert1.htm
ROUND ONE
Reflections on Darkness in El Dorado: Questions on Bioethics and Health Care Among the Yanomami
Dr. Bruce AlbertIn response to the questions posed for this debate ("What are the central ethical issues raised by the book, Darkness in El Dorado, and what would be the best manner of dealing with them?"), I will attempt to offer a contribution derived from my experience as an anthropologist engaged for twenty-six years in projects for and with the Yanomami of Brazil (regarding land, human rights, health, education, and the environment). These projects were conducted by two NGOs that Brazilian colleagues, friends, and I founded: the Comissão Pró-Yanomami (the Pro-Yanomami Commission) in 1978; and Urihi Saúde Yanomami (Urihi Yanomami Health) in 1999. The following commentary will therefore favor both a local point of view and a pragmatic outlook, emphasizing what the debate on the book brings out as relevant to the current situation of the Yanomami and as a concrete contribution toward their future.
My main concern here is to avoid getting snarled in a theoretical and retroactive exercise about anthropological ethics, which, interesting as it may be, would be utterly irrelevant for the Yanomami today and would simply feed a professional self-exorcism, largely rhetorical in nature. Recall that, in the late 1980s, Brazilian anthropologists (see Carneiro da Cunha 1989), via the Brazilian Anthropological Association (ABA), tried to initiate an ethical and political debate with the United States anthropological academic community on the stereotype of "The Fierce People" and its use by the Brazilian military intent on expropriating Yanomami lands. That ABA effort was met with widespread indifference or even disdain on the part of most academics in the United States. It is gratifying to see that, a decade later, this concern has been incorporated by the American Anthropological Association (AAA 2001) into its agenda for investigating various denunciations raised by Patrick Tierney’s book.
I therefore hope that our debate will deal with violations of Yanomami rights, without simply getting bogged down in an exercise of retrospection which might deter us from analyzing their current situation, in which the role of anthropologists and their associations can play a very important role. Furthermore, we should not restrict the discussion to evaluating aspects of individual professional ethics, to the detriment of evaluating the responsibility of the institutions involved in the research in question, a dimension that should lead to concrete measures that benefit the Yanomami.
The Local Context
In the first place, certain local facts must be presented in order to refute the misconception implicit in the debate over Darkness in El Dorado that the polemic being conducted in the United States is relevant to the situation of the Yanomami, and that this debate, in and of itself, serves the Yanomami cause.
The thrust of the dispute over Tierney’s book, which started in the U.S. and spread globally, has been developing in terms that are extremely remote from local realities, as much from the concerns of the Yanomami about whom—and sometimes in the name of whom—people are speaking, as from the NGOs that have been working with them in the field for decades. This is patently clear in Brazil (see Arvelo Jiménez 2001 for a Venezuelan viewpoint). Thus, while the press has dedicated considerable space to what many journalists considered a "war of anthropologists,"the Yanomami, who always appear in the background of the news items as exoticized puppet-victims, continue their hard struggle to make the threats to their rights known and to make their demands heard.
Thus, for example, the most recent general assembly of the Yanomami in Brazil on December 11-12, 2000, which brought together representatives from twenty regions, issued a bilingual document that denounced sexual abuses of Yanomami women by the military on the border outpost at Surucucus, the ongoing land invasions by gold panners and ranchers (at Serra Parima and Ajarani), and the threats by the Ministry of Health to cut the budget allocated to health services. The media paid practically no attention to their document.[1]
Given this framework, the accusations and counter-accusations exchanged over Darkness in El Dorado are not necessarily a guarantee of ethical and political commitment simply by virtue of evoking the Yanomami as victims in the name of whom people are engaging in the debates, nor do these debates automatically or concretely serve the cause of the Indians. Indeed, they may even do the opposite.
For example, certain accusations in Tierney’s book (Chapter 5, discussed below) are being manipulated in the press by local politicians against the NGOs that work with the Yanomami, aiming at having them expelled by the federal government and in this way remove them as obstacles to the pillage of Yanomami territory by regional economic interests (colonists, ranchers, gold panners, and mining companies). Along these lines, Senator M. Cavalcanti (of the state of Roraima) recently denounced the "use of Indians as guinea pigs in vaccine experiments with unknown side effects" by "international organizations in indigenous areas of Amazonia," citing as an example the Comissão Pró-Yanomami. Among various others, this denunciation, taking advantage of the massive press coverage of Darkness in El Dorado, clearly contributed to Senator Cavalcanti’s ability to swing the vote of a Parliamentary Commission of Investigation (CPI) against NGOs in Amazonia. No doubt, this CPI will curtail the work on behalf of the Yanomami and many other indigenous groups, as well as the legal recognition of indigenous territories still pending in the region.
Darkness in Yanomami Studies, Then and Now
As we know, most of the accusations and criticisms made in Darkness in El Dorado are not new: they have been circulating in anthropological debates for years and, in some cases, decades. Adding interviews, travel reports, and some documentary data, Tierney’s journalistic investigations mainly wrap up a number of facts that were already known, as attested by his extensive bibliography. The result is laden with sensationalism and lack of rigo, which usually characterize this kind of exercise.
The first criticism of Napoleon Chagnon’s pejorative representation of the Yanomami goes back to the 1970s (Davis 1976), when the Brazilian Yanomami were experiencing the first invasion of their territory by gold panners. The ethnographic basis for Chagnon’s sociobiological theory of Yanomami warfare was widely challenged starting in the late 1980s (see Albert 1989, 1990; Ferguson 1989; Lizot 1989). Chagnon’s lack of interest for the survival and rights of the Yanomami and his opportunistic creation of the elusive Yanomamö Survival Fund were questioned during this same period (Albert and Ramos 1989). The impact of his massive distribution of manufactured goods on the intensification of the Yanomami wars described in his publications was analyzed in Brian Ferguson’s book, Yanomami Warfare (1995:chap. 13). Ever since his first writings, Chagnon has candidly exposed his field methods, which, in Sahlins’ words (2000), were conducted "in the mode of a military campaign." Similarly, the accusations of pedophilia that Tierney’s book directs against Jacques Lizot already appeared in Yanomami statements transcribed in Mark Ritchie’s book, Spirit of the Rainforest (1996: chap. 9).
However, no matter how much Tierney’s journalistic style in Darkness in El Dorado exacerbated these controversial matters, the accusations he compiled against researchers and journalists who worked among the Yanomami in Venezuela most certainly would have never attained worldwide media coverage were it not for Chapter 5, "Outbreak." In this chapter, Tierney implies that James Neel and his research team aggravated or even provoked a measles epidemic among the Yanomami by using an obsolete and dangerous vaccine in order to prove his genetic theories.
The monstrosity alleged in this accusation, namely, human experimentation and decimation of an ethnic minority, to a certain extent minimized the other charges in the book.[3] For the most part, these charges consist of ethical breaches, both professional and personal, such as using objectionable field methods, manipulating data and images, engaging in shady political deals, indulging in sexual exploitation, and precipitating intervillage contagion and hostilities. As serious as these breaches may be, they are not comparable to the harrowing memories aroused by the connotations of eugenic experiments in the "Outbreak" chapter.[4]
Thus, as soon as I heard about Darkness in El Dorado, it seemed obvious to me that the main (but not only) ethical questions raised by the book revolved around the biomedical research and experimentation conducted among the Yanomami from the 1950s to the 1970s, and the lack of medical assistance which continues to acutely affect the survival of this indigenous people, especially in Venezuela.[5] In fact, an emergency expedition, organized in 1998 by the Comissão Pró-Yanomami (CCPY) and the Dutch branch of Doctors Without Borders (MSF-Holland) in the region of the upper Rio Siapa (a region extensively covered in Chapters 16 and 17 of Tierney’s book), found 58% of the population examined (550 people in 8 communities) ill with malaria, anemia, respiratory infections, malnutrition, and skin diseases.[6]
Biomedical Research and Informed Consent
The shocking idea of deadly biomedical experiments on Yanomami subjects prompted me to write a letter to the French daily Le Monde (Albert 2000) and to commission a technical evaluation of Chapter 5 from a group of four physicians at the Federal University of Rio de Janeiro (UFRJ), two of whom had previous experience with medical work among the Yanomami in Brazil (see the medical report by Lobo et al. 2000).
Their report has several significant findings: that James Neel’s research team did not start the 1968 Orinoco epidemic; that their use of the Edmonston B vaccine was considered to be adequate at that time and appropriate to administer in that particular context; that the team could not be accused of withdrawing medical care when needed; and, in short, that Tierney’s investigative work was totally lacking rigor.
Nevertheless, the report acknowledges the merit of Darkness in El Dorado in providing an opportunity to seriously discuss the implications of biomedical research on minorities and its relation to anthropology. In this context, the investigation by the Brazilian physicians led them to point out technical and ethical flaws in the way James Neel’s team conducted the vaccinations and field research among the Yanomami. These flaws, which ought to be thoroughly investigated, can be summarized in three points:
1. Possible experimentation by comparing the result of injections with and without MIG (measles immune globulin) during the immunization of the Yanomami while the measles epidemic of 1968 was raging (a comparison published in Neel et al. 1970);
2. Inadequate preparation while planning the field trip [7], despite their knowledge ahead of time (in late1967) of the spread of this epidemic from the Brazil/Venezuela border region toward the Orinoco. (Various letters written in November and December of 1967 attest to this knowledge; for instance, D. Shaylor’s letter of December 11, 1967 mentions in its P.S. that "There are reports of measles coming from Brazil down the Orinoco."[8]) This lack of preparation, which had a negative impact on the effectiveness of the vaccination program and mortality control [9], could be attributed to the priority the team gave its research agenda, as James Neel suggested in his fieldwork diary on February 5, 1968 (p. 79): "The measles vaccination—a gesture of altruism and conscience—is more of a headache than bargained for—I would either put this into the hands of the missionaries or place it at the very last."[10]
3. Disregard for the ethical norm of informed consent in biomedical research with human subjects, informed consent having been replaced with exchanges in which goods were traded for the Yanomami’s collaboration (such as in collecting blood samples). Citing the report by the Brazilian physicians,
...the former practice of exchanging gifts for blood (used by the team of Neel and Chagnon with the Yanomami and other groups), or any similar procedure that constitutes a distorted form of ‘informed consent’ from indigenous populations, is nowadays totally prohibited by national legislation, as well as by indigenous communities and organizations in Brazil and worldwide. (Lobo et al. 2000:19) [11]
One might object to the apparently retrospective character of the above comment made by the Brazilian physicians, since it would be improper to criticize the nonobservance of norms that were not yet codified at the time of the research (1967-1968). However, this same report makes it quite clear (Lobo et al. 2000: 9, 13, 16) that respect for informed consent in biomedical research and experiments on human subjects has been considered a fundamental bioethical norm ever since it was established in the Nuremberg Code (1947) and reaffirmed in the Declaration of Helsinki adopted by the 18th World Medical Assembly in 1964.[12] The first point of the Nuremberg Code says:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice...and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision...
Therefore, even if it appears to have been common practice in the United States in the 1950s and '60s to neglect the norms established by the Nuremberg Code (especially with ethnic minorities and vulnerable persons [13]), the fact remains that such disregard for the principle of informed consent by James Neel's team cannot be discarded today as if it were a secondary or anachronistic issue. This is all the more so as we find out that this type of conduct continued along the same lines the following decade in biomedical research among the Yanomami and various other indigenous groups.[14] Indeed, having biomedical researchers fully respect the principle of informed consent among indigenous peoples is, to this day, difficult to achieve. As late as 1995, Napoleon Chagnon was still trying to collect blood from the Yanomami in Brazil without official authorization and without the prior consent of Yanomami representatives, as legally required for conducting any research in indigenous territories.[15]
Institutional Responsibilities: From the "Atomic" to the "Genomic" Era
In this context, it is worth stressing that this ethical question has implications that go far beyond the individual practices of this or that researcher. Hence, the discussion of such an important issue should not be reduced to personal accusations. It is far more productive to turn our attention to the institutional system within which such research projects were framed. Thus, one of the most intriguing results of Tierney’s investigation is his probing into the funding of James Neel’s multidisciplinary research from 1965 to 1972 by the former Atomic Energy Commision (AEC) of the United States,[16] which amounted to nearly two and a half million dollars at the time. Tierney also revealed that the blood samples collected from the Yanomami in Venezuela and Brazil were used for comparative purposes in research on the effects of radioactivity on Japanese survivors of the Hiroshima and Nagasaki bombings (see Tierney’s Chapter 4, "Atomic Indians").
These facts, which also merit further investigation, shift the key of the issue of disregard for informed consent in James Neel’s multidisciplinary research from the "mere" context of personal ethics to the wider level of institutional responsibility. In fact, the data presented by Tierney, if thoroughly confirmed, would bring this violation of Yanomami rights (used as involuntary objects of a biomedical research project) into the larger debate of the ethical breaches involving U.S. research on the effects of radioactivity on human beings carried out during the Cold War.
Certainly the Yanomami in Venezuela and Brazil were not submitted to any treatment that might have put their lives at risk (as was the case in many of the appalling experiments described in Moreno 2000). The fact remains that they were used, even if "only" as a control group, without their knowledge or consent in a research project commissioned by the nuclear agency of the United States government. Furthermore, to date, thousands of blood samples of their relatives (the majority of whom are probably dead) are still in the possession of U.S. research institutions—all this in exchange for some machetes, axes, and other trade goods.[17] This is, then, a clear case in which the rights of the Yanomami have been disregarded, since they were used as objects in biomedical research, the protocol and purposes of which they have never been properly informed.
Besides the issue of informed consent, there are two other ethical considerations to be made here. One is the moral and cultural affront represented by stockpiling the blood of the Yanomami’s dead relatives, now in possession of total strangers in a distant country,
given the particularly salient role that blood and mortuary taboos play in their ritual life.[18] The other consideration is that these blood samples are now available to the Human Genome Diversity Project (HGDP). This project has been the object of strong criticism since the early 1990s for opening avenues that may lead to commercial patents on genetic resources from members of indigenous peoples. This in itself is sufficient ground for concern that even more serious breaches of Yanomami rights are yet to come. In fact, a recent evaluation of the activities of the HGDP raises serious worries about the fate of the Yanomami blood (and of other indigenous peoples in Venezuela and Brazil):
At some point prior to the early 90s, Neel’s collection came to rest at Pennsylvania State University (PSU), which has one of the most ambitious genetic diversity research programmes in the U.S. Researchers at PSU sought a way to revive Neel’s collected samples. Because the old blood separation techniques were imperfect, some white blood cells remained in the samples. From these, PSU was able to draw DNA—and lots of it. Using Neel’s samples and polymerase chain reaction (PCR), PSU created a technique in which ‘the amount of [genetic] material that can ultimately be made available is, for many practical purposes, unlimited’ [Weiss et al. 1994]. (Hammond 2000) [19]
The author of this text concludes by pointing out, very appropriately, the new ethical questions raised by this scientific frontier, which is already being denounced by indigenous peoples [20]:
The ethical questions raised by the technique are monumental. How can dead people...[or] peoples grant consent? Is it right for geneticists to perform new tests unanticipated at the time of collection? Should they go back to seek permission from the donor, and donor people? If the donor is deceased or gone, should they seek permission from relatives?...The Neel samples holder, PSU, did not consider consultation with Brazilian indigenous peoples necessary. (Hammond 2000)
Finally, returning to the Cold War years, Darkness in El Dorado also reveals (although with scanty details: see Chapter 18, "Human Products and the Isotope Men," in Tierney 2000) that another type of biomedical research was conducted on theYanomami in Venezuela between 1958 and 1968 under the rubric of the AEC. This research was carried out to study Yanomami thyroid metabolism by administering Iodine 131 radioactive tracer. The medical report of the Brazilian physicians (Lobo et al. 2000:12, n. 18) also makes a brief reference to these studies (citing two articles, 1959 and 1961, by Venezuelan endocrinologist Marcel Roche, who conducted them [21]), calling attention to the fact that this research brought no benefit to the Yanomami.
We also know from Lizot (1970), who began his fieldwork as a collaborator in this research, that it continued from January of 1968 to February of 1970, this time also carried out by the French Commissariat à l’Energie l’Énergie Atomique (CEA). Anthropologists were given the task to "assure the continuity of the scientific mission by administering Iodine 124, collecting regular blood specimens, and measuring thyroid activity during the absence of the biologists" (Lizot 1970:116).
Thus, not only do we have here another instance of violation of the principle of informed consent added to that committed in James Neel’s genetic research, but also two possible aggravating circumstances, which should be carefully investigated. The first is the apparent absence of any medical benefit for the Yanomami, not even the indirect advantage of the hectic vaccination carried out during James Neel’s 1968 research. The second is their possible exposure to unforeseen biological risks. Considering the Yanomami’s isolation at the time, this was an act of sheer irresponsibility, which nowadays would be utterly inadmissible.
Conclusions
In light of all these facts, my main conclusion here is that, beyond the ethical debate over the conduct of individual researchers (toward which the AAA investigation will surely make a valuable contribution), it is still necessary—indeed indispensable, considering the rights of the Yanomami—that more comprehensive investigations be carried out by an independent bioethics committee to provide complete information on the following issues:
(1) the institutional and technical-scientific aspects of the research commissioned from James Neel by the AEC in the 1960s and 1970s, and on the circumstances that led to the selection of the Yanomami as a control group in this research;
(2) the location, legal status, and current use of the Yanomami blood samples collected during the time of Neel’s research;
(3) the institutional framework, technical application, and the risk/benefit ratio for the Yanomami of the research on their thyroid metabolism using radioiodine (Iodine 131 and Iodine 124) in projects carried out in Venezuela by the U.S. AEC and the French CEA.[22]
It is essential that Yanomami representatives both from Venezuela and Brazil be duly informed about the terms and progress of these investigations, so that, if the case warrants it, they can bring lawsuits (with the support of the Public Ministry in each of these countries) to obtain compensation for the violation of their rights during those research projects.
The next step might be to channel compensation benefits generated from these lawsuits to health projects for the Yanomami in Venezuela and Brazil. This would be the only ethically respectable way to redress the damage done to them by the U.S. and European nuclear establishment (and by institutions exploring genomic possibilities) in the name of scientific research. While these projects contributed a great deal to promoting their authors’ careers, they were never of much use to their unknowing "objects" in guaranteeing their survival and recognition of their human rights.
Last but not least, it is up to anthropologists to think about the consequences of subjecting their work to the logic of a kind of biomedical research - which reduces the members of indigenous peoples to "human material," thus denying them their subjectivity and agency, as recognized by the bioethical codes prevailing since 1947. To do this is to undermine the very foundation of our discipline, which charges anthropologists with the duty of giving preeminence to the "natives’s point of view" in its ethical, intellectual, and political dimensions.[23]
ENDNOTES
[1] See the Comissão Pró-Yanomami Bulletins #9 and #10 (available upon request by e-mail at ccpydf@uol.com.br).
[2] Brasil Norte, Oct. 14, 2000, p. 5.
[3] The description of the filming of a sick Yanomami woman and her baby in agony, without medical assistance by a BBC television crew accompanied by an anthropologist (Jacques Lizot), as described in Chapter 13, surely must be one of the most dramatic passages in the book.
[4] The e-mail of Terry Turner and Leslie Sponsel, which triggered the media attention before the publication of Darkness in El Dorado, alerted the president of the AAA to the fact that "Tierney’s well-documented account, in its entirety, strongly supports the conclusion that the epidemic was in all probability deliberately caused as an experiment designed to produce scientific support for Neel’s eugenic theory." This letter is posted at: http://www.anth.uconn.edu/gradstudents/dhume/darkness_
in_el_dorado/documents/0055.htm.
[5] In Brazil, a reform in the administration of indigenous health services in 1999 delegated medical care in the Yanomami area to various NGOs, among which the most important is Urihi Yanomami Health, which is now attending approximately 5,250 Yanomami in 96 communities, using funds from the Brazilian Ministry of Health.
(See the website http://www.urihi.org.br for a report on the activities initiated by this association.)
[6] CCPY-MSF/Holland 1998, "Expedicion a la región del área Yanomami Venezolana en carácter emergencial. Informe final. Octubre 1997-Maio 1998." The communities of Narimipiwei II and Toshamoshi (see references to "Narimobowei" and "Doshamosha" in Tierney 2000:277, 283-84) revealed the highest rates of malaria (58.3% and 50.4%, respectively).
[7] According to the report of the UFRJ physicians, Neel and his team should have taken "precautions that would have reduced the difficulties encountered in the field, includ[ing] the training of those administering vaccinations, information on complications and treatments, provisions of medications and antibiotics, an itinerary and schedule of villages to visit, etc." (Lobo et al. 2000:18).
[8] See references labeled COR 5, 22, 38, 39, and 81 in Stevens and Turner 2001, part II.
[9] In the words of the UFRJ physicians’ report, "[T]he planning and organization of their movements—whether they gave priority to either medical care or research— probably had a greater impact on the failure of the vaccination (since immunization took place later than 3 days after infection) and the lack of control over mortality (due to the ill-preparedness of the team for dealing with the serious complications of measles, mainly pneumonia), rather than on the spread of the epidemic"(Lobo et al. 2000:36).
[10] See Stevens and Turner 2001, part III.
[11] See also Tierney 2000:45-46.
[12] See documents posted at http://www.irb-irc.com/resources
/nuremberg.html and http://www.irb-irc.com/resources/helsinki.html.
[13] On this matter, see Chapter 7 of the impressive book by J. D. Moreno (2000).
[14] In Brazil, this included the Krahó, Kayapó-Gorotire, Makuxi, and Wapixana (1974), and the Ticuna, Baniwa, and Kanamari (1976) (see Salzano 2000).
[15] This episode is documented in Darkness in El Dorado (Tierney 2000:xxi-xxiii and notes on p. 328 citing documents of the Brazilian Indian bureau).
[16] More precise information has been furnished by Tierney since the publication of his book, at the site http://www.anth.uconn.edu/gradstudents/dhume/
darkness_in_el_dorado/ index.htm (see "Independence of the Atomic Bomb Casualty Commission").
[17 In Darkness in El Dorado, Tierney (2000:51) mentions that 12,000 blood samples are today under the power of Pennsylvania State University, at the disposition of the Human Genome Diversity Project (HGDP).
[18] See Albert 1985 on Yanomami conceptions of blood and mortuary rituals.
[19] For a synthesis on intellectual property and genetic resources, see UNESCO 2000.
[20] See the editorial in New Scientist 2000.
[21] Details and contextual information on Roche’s research with radioiodine are provided by Dr. E. Romano of the Instituto Venezolano de Investigaciones Cientificas (IVIC) at the site http://www.ivic.ve/ivicspan/darkness.html.
[22] See, for example the recent investigation into studies using radioiodine 131 on the Inuit and Indians in Alaska by the Air Force’s Arctic Aeromedical Laboratory in 1956-57, posted at http://tis.eh.doe.gov/ohre/roadmap/achre/chap12_14.html.
[23] For a broader reflection on the relations between anthropology and anthropological advocacy, see Albert 1997.
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