Internet Source: Public Anthropology: Engaging Ideas, May 27th 2001
Source URL (Archive.org): http://www.publicanthropology.org/Journals/Engaging-Ideas/RT(YANO)/Albert3.htm
ROUND THREE
Human Rights and Research Ethics among Indigenous People: Final Comments
Dr. Bruce Albert
Research Director
Research Institute for Development (IRD)
Paris, São Paulo
I was favorably impressed with the progress of our last round of papers in turning the wild polemics over Darkness in El Dorado into a more intellectual and constructive debate oriented toward a wider reflection on essential points of anthropological, biomedical, and missionary ethics. To pursue these issues further, I will first comment on two themes emerging in our last round that are especially relevant to indigenous human rights: cultural relativism vs. ethical universalism, and the ethics of truth vs. the ethics of responsibility. I will then develop my argument about biomedical and anthropological research ethics, since this topic lies at the core of our debate, and explore the lessons we can learn from the Yanomami case. I will conclude by making some suggestions about the contributions we can make toward improving the Yanomami’s current situation, since this has been my first and foremost motivation for taking part in this roundtable.
Cultural relativism and human rights
I have already expressed my general opinion on missionary work, and I agree, for the most part, with both sides of Kim Hill’s last contribution on this subject: on the positive side (since I do not condone stereotypes about missionaries or blind, decontextualized condemnations of their work) and on the critical side (since we are still waiting for a self-reflective analysis from missionaries about their ethnocentrism and aggressive proselytizing in the field). However, given our efforts toward a more constructive debate, his reaction to the information I provided regarding the sexual abuse of Yanomami women by Brazilian soldiers was, in my opinion, quite inappropriate. Hill’s response to this report was to criticize "anthropologists…enamored with an ideal of pure cultural relativism, often prepared to ignore or even defend gross human rights violations when committed by members of small oppressed ethnic minorities." This extraneous and offensive accusation deserves a brief comment (besides noting that it is very close to the "sleazy journalistic devices to imply connections that are non-existent," which Hill accuses Tierney of using).
I have been engaged in defending the Yanomami’s rights ever since I began fieldwork in 1975. This engagement has not been motivated by a naive vision or a manipulative idealization of the Yanomami. Rather, it has been based on two fundamental ethical convictions, professional and personal. I consider my social engagement to be an essential counterpart of my anthropological research work, and I believe that human rights (including, of course, the universal right to cultural differences) must be defended in every context in which we act.
This means that if the Yanomami’s rights are violated, I maintain that we must fight these violations in every way possible in the name of the principle of universal human rights. But this also implies that the Yanomami, whose rights and duties are part of this universality, must respect these human rights as much as we do when we defend the Yanomami in the name of such universals. We cannot sustain an ethical equivalent of the paradox of Zeno of Elea, who, while walking, negated the existence of motion: that is, we cannot defend the Yanomami in the name of universal human rights and, at the same time, relieve them of their responsibility to observe them.
Therefore, we have no other alternative than to find meaningful ways of affirming cultural particularism within the universalist ideals of our democratic societies. An effective struggle for the former is, in fact, necessarily based on the latter (since our democratic legal systems legitimate indigenous collective rights). Indigenous societies are confronted with the parallel challenges of pursuing their sociocultural reproduction at the same time as they are becoming increasingly aware of the juridico-ethical values that can guarantee them a decent role in the nation-state in which they are included.
I thus contend that the Yanomami must be properly informed about the meaning of the principle of universal human rights and what it entails (because they are defended in its name), and then encouraged to debate the issue among themselves and how to socially acknowledge such a principle. However, we must avoid adopting an arrogant stance in this process, since our own societies certainly cannot boast a perfect record. Radical cultural relativism or differentialism, or, even worse, an opportunistic use of universality will only lead to trouble. I have had pointed discussions (and some heated arguments) with Yanomami men about the abuse of women. Yanomami political representatives, professors, and health attendants are now well aware of this interethnic ethical issue (among others) and are actively promoting a broader discussion and concern about it in their communities.
This being clarified, I am sure that Hill would agree that violence against women, which must be condemned everywhere, is not an exclusive specialty of the Yanomami (again, let us compare the record of the non-indigenous world on this matter).1 It thus cannot be used to single out Yanomami society, as the media have done for decades, based on Chagnon’s on-going caricature of the Yanomami’s "warfare over women," as if the particularity of Yanomami society and culture among those found around the world could be encapsulated in these three words.
I must also underscore the fact that the sexual abuses condemned by the Yanomami assembly of December 2000 involve a system of prostitution set up by Brazilian soldiers at a border outpost, who use food and trade goods as payment to exploit Yanomami women, most of whom are mere teenagers. This constitutes an extremely serious matter, which is currently being investigated by the Human Rights Commission of the Brazilian House of Representatives.2 I hope that Hill will agree that it deserves more careful attention from anthropologists concerned with human rights than to be used as a polemical manoeuver in a purely academic exercise.
Moreover, anthropologists and other researchers should pay more heed to the broader issue of interethnic ethical dilemmas in human, since it raises serious questions relevant to indigenous rights advocacy. From this perspective, Hill’s point (putting aside its polemical intentions) could be a positive contribution to our debate on ethnographic representations and anthropological ethical responsibilities. However, he could have introduced it in a more sophisticated manner, such as that followed in the special issue of the Journal of Anthropological Research, edited by Turner and Nagengast (1997) on this theme.
Nevertheless, Hill has given me a good opportunity to clarify my position on such ethical dilemmas. I believe that the most satisfactory solution is to pursue a progressive intercultural debate on a case-by-case basis in order to reach the best possible balance between the respect for cultural particularities and the respect for the universal human rights of individuals. This approach represents a kind of mediated and pragmatic universalism, which Todorov (1989) aptly called a "universalisme de parcours." I believe that it is unproductive to oppose radical cultural relativism to ethical universalism on a purely theoretical level. These positions form the complementary foundations of the respect for indigenous minority rights, one at the collective level (since cultural differences underpin access to specific collective rights, e.g., to land, religious freedom, and culturally appropriate schooling), the other at the individual level (since universal rights protect members of minority groups against personal abuses within their own societies).
In this context, discussions about one dimension of rights or the other (either particular/universal or individual/collective rights) are relevant only when they take into account the actual contexts in which these rights are to be exercised. This means that we should support Yanomami collective rights in interethnic political contexts (promoting cultural relativism), just as we should help protect Yanomami individuals against abuses in intraethnic contexts (affirming ethical universalism). If we invoke one set of rights in the context of the other (for example, denouncing Yanomami individual abuses when their collective rights are threatened), we end up with intellectually faulty and politically irresponsible results. This confusion undermines our effectiveness in promoting Yanomami collective rights without contributing anything to the rights of any concrete Yanomami individual.
Let me give an example of such a situation. Based on the reputation of the Yanomami in the U.S. stemming from Chagnon’s works, a major Brazilian newspaper, the Folha de São Paulo (April 7, 1990), called them a "fierce people who practice wife-beating and female infanticide." The article, entitled "Feminists attack the Yanomami," was published at the same time as thousands of gold panners were invading Yanomami territory, spreading diseases and violence. It quoted a group of American feminists who described the Yanomami "as a primitive and brutal culture" and asked, "Our question is the following: does this society merit being protected against the twentieth century? Or, to put the question another way: are the gold panners really the outlaws in this story?"
Truth and responsibility in human rights advocacy
I am pleased that, in his second paper, Hill reaffirms a principle on which everybody can agree: that anthropologists should make a special effort to get involved "if [their] study population[s] [are] being harmed through the misuse of [their] own words." Besides the first warnings of U.S. anthropologists such as Shelton Davis (1976) or Judith Shapiro (1976),3 the Brazilian Anthropological Association (ABA) and its members sent two letters to the American Anthropological Association (AAA) in 1988 and 2001 in an attempt to call Chagnon’s attention to the effects that his stereotype of the Yanomami as "the fierce people" have had as his interviews in the U.S. media have ramified through the local Brazilian press and fed the racist anti-Yanomami campaigns of the Brazilian military, local politicians, and gold miners. If another example is still needed after Lêda Martins’s two papers in our debate, see the article "Violence, the mark of the Yanomami," published in another major Brazilian newspaper, O Estado de São Paulo (March 1, 1988), after Chagnon’s article on Yanomami "blood revenge" appeared in Science during the Roraima gold rush. I still hope, after 25 years, that Chagnon will realize the harmful ramifications of his portrayals of the Yanomami and engage in energetic, concrete actions to turn them around.
Despite his admirable introduction, Hill keeps on insisting that Chagnon cannot be held accountable for these uses of his public negative portrayal of Yanomami society. I am puzzled by the sophistic structure of Hill’s reasoning on this issue. Why does he begins with a reaffirmation of a generic ethical principle but then develop convoluted arguments to neutralize its relevance to the concrete situation we are discussing? Are Hill and Hames really conducting serious discussions when they try to exempt Chagnon of his ethical responsibilities by answering the documented protests by ABA and Brazil-based specialists with simplistic conjectures about the image of the Yanomami in Brazil, quibbles about what Brazilian generals read, and speculations about the esteem that the Yanomami hold for the police and military ? I will let the readers of our exchanges be the judge.
In his first paper, Hames criticized NGOs for portraying indigenous people in an overly-positive light. If his point were not embedded in an evasive argument to rescue Chagnon, I could have agreed with him. In fact, I have been quite harsh myself in underlining the dangers of "the questionable use of stereotypical and exoticizing imagery (the ecological and New Age Noble Savage) to which certain NGOs link the recognition of indigenous peoples’ rights in order to guarantee their own legitimacy and boost their fund-raising activities" (Albert 1997:60). But Hill goes much further here by accusing "some anthropologists" who "exaggerate or distort the truth about indigenous rights issues in order to hopefully stimulate more public support for their cause."
Besides approaching libel, this argument is irrelevant to evaluating Chagnon’s role in fostering negative stereotypes of Yanomami society. Moreover, it is logically self-contradictory. Indeed, if Chagnon bears no ethical responsibility for propagating pejorative images of the Yanomami, why defend him by accusing his critics of doing the same thing in reverse (i.e., propagating positive stereotypes)? Doesn’t this symmetrical inversion amount to an implicit acknowledgment of Chagnon’s responsibility? But, leaving aside their sophisms, I agree with Hill and Hames that distorting facts on behalf of indigenous peoples’ rights is not only unethical, but also ineffective in human rights struggles.
Like Hill, I have a personal testimony to offer on this issue. In August, 1993, the front pages of every major Brazilian newspaper and magazine, as well as many of those in the international media, carried the story of a massacre of the Yanomami in Brazil. The first alert about the massacre was raised by a letter (August 17, 1993) from a Brazilian nun working for the government health service in the region of Xitei on the upper Parima River in Roraima. She had heard about it from some terrified neighbours of the murdered Yanomami. The President of FUNAI (the National Indian Foundation) and the Ministry of Justice (on which FUNAI depends) announced the massacre a few days later to the press. During the following weeks, a media war of contradictory statements was waged between pro-Indian groups (including FUNAI, certain Congressional members, the Catholic church, and NGOs) and the anti-Yanomami lobby (made up of members of the military and the mining industry, gold panners, ranchers, and their political supporters in the Brazilian Congress). These statements either maximized the number of victims (between 30 and 73) or categorically denied that any massacre had taken place. Without any direct testimony or factual evidence, the contest over different versions of the incident served only to fuel the "great divide" of the Brazilian indigenist political scene with renewed vigour.
I was in the field at that time, in Davi Kopenawa’s village, near the Pro-Yanomami Commission (CCPY) health post at Demini in northeastern Amazonas. On August 24, a CCPY medical team at a second health post (Parawa u) told us by radio that some Yanomami of the upper Demini River had come across a group of wounded Indians heading toward a third CCPY post on the Toototobi River. I radioed a request to the local CCPY office in Boa Vista (the capital of the neighboring state of Roraima) to send a plane to pick me up and fly to Toototobi. On August 25, I interviewed some of the survivors of the massacre at Toototobi and immediately afterwards sent a report to the CCPY office. In the following days, I took part in the official Brazilian inquiry into the case launched by the Federal Police and the Attorney General’s office. A press release was then issued, stating that sixteen Yanomami had been cruelly massacred by a gang of Brazilian gold panners near a small tributary of the Orinoco headwaters in Venezuela, an episode that came to be known as the "Haximu massacre."
By discovering that the number of victims was much less than the figures of 30-73 that FUNAI gave to the press, I incurred the antipathy of several native rights supporters. To have shown that the episode was perpetrated in Venezuela by Brazilian gold-panners irritated Brazilian authorities. The fact that I proved that a massacre had actually been perpetrated against the Yanomami upset the military, local politicians, and gold-panners. A communist member of the Brazilian Congress also requested my expulsion from the country. One can understand why I felt quite lonely during this episode. But with the help of a small group of Brazilian colleagues and serious NGOs (such as CCPY and ISA, the Socio-Environmental Institute, a São Paulo-based organization), I managed to continue collaborating with the Attorney General’s inquiry and to publish my final report in the major Brazilian and Venezuelan daily newspapers (in early October 1993). Deeply disappointed by the reaction of some indigenist rights groups during the inquiry, I dedicated the report as follows: "To those who think that 16 deaths reduced the gravity of the episode; to those who feared that a ‘mere’ 16 deaths diverted attention from it, I offer this report as food for thought."4
Chagnon’s record on this matter was not one of the most ethically edifying. His whirlwind trip to Haximu on September 28, 1993 (see Tierney 2000:chap. 12) took place a month after my first interview with the Yanomami survivors in Toototobi (August 25, 1993) and one day after the final version of my report for the Attorney General was transmitted to the press (September 27, 1993). Given his timing, plus the fact that the massacre did not take place precisely inside the Haximu village where Chagnon went, but, rather, in a temporary camp in the jungle, one can easily appraise the validity of his "investigation." His belated and superfluous intervention was irrelevant to the legal case, which had been conducted entirely within Brazil. In fact, he used the press interest in the massacre mainly to redirect its focus to his dispute with members of the Catholic Church and his other opponents in Venezuela, whom he accused of covering up the massacre (Chagnon 1993), even though the Brazilian investigation had already identified the murderers and arrested some of them much earlier.
My involvement in the Haximu case demonstrates (like Hill’s testimony) that it is not easy for anthropologists to stick to their commitment to rigorous research when indigenous rights battles are so heavily loaded with broader political issues. But it also demonstrates that this commitment to truth can obtain effective results only if it is complemented by vigorous social engagement. The detailed documentation of the Haximu massacre that the Attorney General was able to produce led to the first legal recognition of an Indian massacre as attempted genocide in the history of Brazil (see the ruling of December, 1996, by the Federal Judge of Roraima, confirmed by the Supreme Court (Superior Tribunal de Justiça) in September 2000).5
To conclude, handing down anthropological truths with no concrete involvement may be comfortable for anthropological egos, but it does not necessarily convey positive effects for the human rights of indigenous peoples. Idées-vraies can become idées-forces that are capable of changing human rights situations only when they are backed up by effective social engagement, since, as Spinoza wrote, "il n’y a pas de force intrinsèque de l’idée vraie" ("there is no intrinsic force in a true idea") (quoted in Bourdieu 2000:68). This is what is at stake in the classical debate over the opposition between an "ethic of ultimate ends" (the duty to truth) and an "ethic of responsibility" (the duty to act), on which Max Weber concluded: "an ethic of ultimate ends and an ethic of responsibility are not absolute contrasts but rather supplements, which only in unison constitute a genuine man" (Weber 1958 [1919]:127).
Biomedical and anthropological research ethics
Final comments on Neel’s 1968 Orinoco vaccination
I will not say much more here about the 1968 Orinoco epidemic and how Neel’s research team dealt with it, since I think that the essential points were made earlier in our debate. I will simply insist again on the fact that, as I wrote in my first and second papers, both the report of the Brazilian physicians (Lobo et al. 2000) (which Chagnon6 himself praised) and the preliminary report by Stevens and Turner (n.d. [2001]) on Neel’s field papers suggest possible breaches of biomedical ethics in the manner in which blood sampling and vaccinations—which were not merely "observational research"—were conducted among the Yanomami. Their activities may have violated ethical norms in vigour at the time in three ways: by giving priority to a research agenda over vaccinations in the midst of an epidemic; by carrying out inappropriate vaccinal experiments; and by disrespecting the rule of informed consent in biomedical sampling. These indications are serious enough to warrant a full investigation by an independent bioethics committee to bring the discussion of this issue to a close. I do not think that anthropologists have the qualifications to draw final conclusions on the subject of bioethics.
I am glad that Hames agrees that consulting a bioethics committee on Neel’s research among the Yanomami is "a useful idea" that may close the case and "provide…some guidelines for researchers who engage in future work among indigenous people." I also agree that it is "a very complex historical issue" requiring more research by such a bioethics commission. However, I am puzzled when he then suggests including an investigation into the emergency medical expedition by CCPY and the Dutch branch of Doctors Without Borders (MSF-Holland) on the upper Siapa River in 1998. Since he apparently has no information about this medical expedition, let me provide him with some.
Unlike Neel’s expedition in 1968, the 1998 Siapa expedition was not a research expedition to collect blood samples or other biological specimens. It was not even an expedition "to investigate epidemiological patterns," as Hames put it. It was purely an emergency health operation conducted to rescue dying Yanomami, conducted in full accord with the health and political authorities of Venezuela. Hames’s question about informed consent is well answered by the introduction of the report, which also conveys a sense of the dire health situation of the Yanomami in Venezuela:
...at several health posts in Brazil, various requests for help were received from communities that live near the border in Venezuela. These communities frequently cross the border, and the precarious health situation of some of these Yanomami is evident. In the health posts attended by CCPY in the regions of Balawaú [Parawa u] and Toototobi, the visits of Yanomami coming from communities in Venezuelan territory who gave accounts about their health problems are relatively frequent. This type of request cannot be attended without knowing the location of the communities from which they come.
These mounting circumstances led MSF and CCPY to enter into contact with the health authorities in the state of Amazonas [in Venezuela] to evaluate the possibility of coordinating a mission to the border regions on the upper Orinoco River and the Siapa Valley. This possibility was well received by the Venezuelan authorities who, for their part, shared similar concerns over the health situation of the Yanomami communities in these regions. After negotiations that established the basis of the cooperation among CCPY, MSF, and the Regional Health Council in the state, preparations for the trips were begun. (CCPY/MSF-Holland n.d. [1998]:4).7
Finally, having cooperated since the mid-seventies with so many Brazilian and foreign physicians and health professionals (from missions, official agencies, and NGOs) and seeing them spend years of their lives at great risk in the forest to deliver medical services to the Yanomami, I was amazed to read Hill’s statement that Neel (perhaps because he is a U.S. scientist) is "the one person in the world who did the most to save Yanomami lives."8 Such overblown and insulting rhetoric could have been avoided.
With these last comments made on the 1968 Orinoco vaccinations, let me move on to deal with several aspects of anthropological and biomedical research ethics raised by Hill and Hames in reaction to my paper in the first round.
A biomedical/anthropological ethical "double standard"?
Hill seems upset by the idea that biomedical researchers should be held accountable for providing medical assistance when needed to the indigenous people with whom they work. He claims that this is the responsibility of national and local agencies and missionaries. In his eyes, as "researchers and not practitioners," they "can not get involved in treating every sick person they encounter in the field." The lack of humanity in this statement is quite shocking to me, and I believe no physician would sustain it, since it contradicts medical deontology and the philanthropy of the Hippocratic tradition.9 But this is probably another unfortunate polemical excess, since, in his paper for the first round, Hill recognized, to the contrary, that "the health and welfare of the study population must always take precedence over any academic goal." Indeed, he himself acted very properly by interrupting his research during an epidemic in the Manu Park in 1986, according to his own account.
However, as if this contradiction was not enough, Hill also protests in his second paper against the fact that sociocultural anthropologists are not expected to give paramedical assistance (stating that they "can go to the field for years and provide no medical services to their study population"), although he knows that most do so, even if it is not their professional speciality (for instance, in Hames’s and my experiences).10 On these grounds, Hill charges Turner and me with being primarily concerned with the ethical regulation of biomedical research and not with sociocultural anthropologica! research, and thus accuses us of developing a "blatant double standard."
This mixture of contexts is simply absurd. The kinds of research conducted in sociocultural anthropology and biomedicine are obviously different activities, governed by different codes of ethics, and having different implications for indigenous peoples’ rights. Does it make sense for Hill to suggest that the recording of mythical narratives or social philosophies by Lévi-Strauss lies on the same level as the collecting of blood samples or administration of radioactive iodine tracers? I don’t think so. So let us ask more reasonably for each kind of researcher to assume their own specific ethical and professional responsibilities toward the indigenous people from whom they get their information.
The knowledge that sociocultural anthropologists gain from indigenous people can be reciprocated—beyond simple payments in trade goods—by an involvement in advocacy for indigenous rights (which biomedical researchers could do as well). More specifically, anthropologists can make use of this knowledge to benefit the people who transmitted it (in my previous paper, I mentioned yet another aspect of this issue, i.e., the redistribution of profits from books, photos, and films). Even if sociocultural anthropologists cannot be asked professionally to assume medical care (which biomedical researchers cum physicians certainly can be),² at least they can be asked to engage or collaborate in advocacy activities to create medical programs for the indigenous people with whom they work or serving as ethnographic consultants to make health services more effective and less culturally damaging (see Albert and Gomez 1997).
I do agree with Hill’s point that any kind of research with indigenous peoples, be it biomedical or anthropological, must be regulated, even if along different lines, to protect their rights and to contribute to their welfare. As a matter of fact, it is precisely on such grounds that we are devoting equal attention in this debate to the breaches of anthropological research ethics (by Chagnon) and breaches in biomedical research ethics (by Neel and Roche).
I further agree with Hill that indigenous peoples’ rejection of the antiquated colonialist style of "hit-and-run" ethnographic research presents a significant challenge to sociocultural anthropologists and must lead them to assume their political and ethical responsibilities toward these peoples in more satisfactory ways. However, indigenous people have expressed greater worries over the abuses of genetic research blood sampling and the patenting of indigenous DNA than over the exoticizing in cultural anthropology (see the Canadian examples in New Scientist 2000, Alphonso 2000), a point to which I will return later in discussing the Brazilian situation.
In my view, the social responsibilities of anthropology imply that its research procedures must involve the negotiation of a kind of pact of reciprocity between indigenous people and ethnographers. It is precisely in this context that I understand my engagement with the Yanomami since I began fieldwork in 1975. In reflecting on my own experiences, I wrote an article in 1997 about the new conditions of "post-Malinowskian fieldwork" for ethnographic research and anthropological advocacy (see also Albert 1995). I argued that:
…anthropologists find themselves faced with two ethical and political obligations which were eluded by classical ethnography, but are unquestionable nowadays: on the one hand, being accountable in their work to people who were traditionally the "object"’ of their studies; on the other, assuming the responsibility their knowledge entails for these peoples’ resistance strategies vis-à-vis the dominant nation-states’ discriminatory and despoiling policies. (Albert 1997:56)
Thus, I cannot be suspected of developing any ethical "double standard" or shielding sociocultural anthropology from ethical regulation. The ideas of negotiating research projects and establishing terms of reciprocity with indigenous people that I discuss here (which include but go beyond the process of obtaining informed consent) have not yet entered the professional codes of ethics of anthropological associations.11 But they are making their way in national indigenist legislation and regulations under pressure from indigenous peoples, who are becoming increasingly empowered to assert their rights.
Regarding the Brazilian situation, my previous paper quoted Resolution 304/2000 of the Brazilian National Health Council (note 5), dealing with biomedical research among indigenous communities; also, the medical report by Lobo et al. (2000: point 4) briefly described the earlier, more general Resolution 196/96. I could also quote FUNAI’s 1995 Normative Instruction 01/PRESI (Art. 7), which states that ethnographic research in indigenous areas can be authorized only if it involves a negotiation process with the communities and if they grant their consent to the research project.12 These regulations give an administrative and juridical frame to the negotiations (mediated by the state) between researchers and indigenous peoples. But the process of negotiation is conducted by the indigenous peoples themselves as they pursue their own social and cultural agendas. They generally carry out open-ended discussions with the researcher, asking first for a public explanation of the project and, if they consider it harmless to their rights and welfare, then negotiating for direct benefits from it and recording the agreements on paper. The benefits are usually material (tools and medicines, payments for intellectual property and image rights) as well as immaterial, which generally include the anthropologist’s help in land, environment, or health projects or general advocacy work.
Some indigenous organizations are now beginning to think about the issue of "participatory research" on a more ambitious level. A good example in Brazil is the international seminar organized by the Federation of Indian Organization of the Rio Negro (FOIRN) (along with the Socio-Environmental Institute) and held in November, 2000, to which forty scientists from different fields (anthropology, archaeology, natural sciences, ecology, biomedicine, and nutrition) were invited to negotiate collaborative agreements in the planning of regional research.13
I hope that these Brazilian examples also answer Hames’s legitimate worries about indigenous peoples’ ethical standards for research projects, which he correctly points out is a matter that few researchers bother to consider. These examples demonstrate that one of their preeminent standards concerns tangible and intangible reciprocation for their collaboration in such projects, whether they deal with anthropology, biomedicine, or any other scientific field. The FOIRN seminar established a list of "criteria and procedures for regulating relations between researchers and Indians of the Rio Negro," among which figured prominently the "identification of the forms of recompense (contrapartida) for the community/people, which will ensure that their members receive a social return from the work conducted." This makes it clear that the concept of a "social return" for research conducted among them (what I called above a "pact" or "terms of reciprocity") is indeed a crucial point for indigenous people in the Amazon region when negotiating with researchers, since their communities are most of the time politically, economically, and socially marginalized.
To conclude, I agree with Hames that the gradual transformation in the relationship between indigenous peoples and researchers toward a more "participatory research" is a "welcome change...largely a consequence of increased political power of indigenous groups which require researchers to balance their professional interest with those they study."
More on informed consent and biomedical research among the Yanomami
This discussion about social returns and the negotiation process between indigenous communities and researchers answers most of Hill’s challenges about the differences in obtaining informed consent in ethnographic studies as compared to biomedical research. As it has been made clear, sociocultural anthropologists, just like other researchers, must explain and submit their research projects to the communities where they want to conduct them. In Brazil, the regulation of biomedical research is now somewhat tighter than it is for ethnographic research, mainly because these regulations has been revised more recently and have thus integrated the most sophisticated debates on bioethics and informed consent. However, the trend in the country suggests that the criterion of control applied to biomedical research will soon be expanded to all other kinds of research with indigenous people, including anthropological fieldwork—in fact, it already applies to foreign anthropologists.
As to the complexity of explaining research methodology and goals in the process of obtaining informed consent among indigenous peoples, I have some more comments to make:
1) In my previous paper, I pointed out how ideologically dangerous it is to use the existence of cultural-linguistic obstacles to seeking informed consent as an excuse for exempting researchers from obtaining such consent. I also showed how this unethical logic, challenging the universality of its application, undermines the very idea of informed consent, laid out by the Nuremberg Code in 1947.
Administering radioiodine to the Venezuelan Yanomami from 1958 to 1970 without following any procedure for obtaining proper informed consent (as Hill agrees it was the case) clearly rested on such morally defective reasoning. It was also an experiment (not simply "observational research") conducted without ever making any proper risk/benefit ratio evaluation of its impact on the Yanomami subjects, although this kind of evaluation was recommended by the World Medical Association in 1964 in the Declaration of Helsinki I. Hames could have consulted that document instead of getting confused over the notion "that research on a group had to benefit the group being researched," which was not the way the problem of the radioiodine experiment was set out in my first paper, had he read it carefully.
Let me quote the relevant point of the Helsinki I Declaration on this issue:
5. Every biomedical research project involving human subjects should be preceded by careful assessment of predictable risks in comparison with foreseeable benefits to the subject or to others. Concern for the interests of the subject must always prevail over the interests of science and society.14
If a bioethics commission were to retroactively conduct this kind of risk/benefit analysis, it should include not only a parallel evaluation of Roche’s goiter studies15 (I agree on that with Hames and Hill), but also an investigation into the research agendas of the atomic energy commissions in the U.S. (the AEC) and in France (the CEA), which funded and organized most of these radioiodine research projects (do they also agree with me?). They may recall (from note 22 of my first paper) that a committee of the U.S.
Institute of Medicine and the National Research Council retroactively reviewed the Radioiodine 131 experiments on the Inuit and Indians of Alaska, which the Air Force’s Arctic Aeromedical Laboratory had carried out in 1956-57.16 Why not also review the Yanomami experiments funded by American and French nuclear research agencies?
I mentioned the Nuremberg Code in my first paper, not because I am ignorant of more recent developments in biomedical ethics, as Hill seems to suggest, but because: (a) it already defined the norms of informed consent at the time of Neel’s and Roche’s research and experiments (like the Helsinki I Declaration), and thus it should have guided their work; and (b) in contrast to Hill, who thinks the Code is "a minuscule part" of bioethics, I agree with those who see the Nuremberg Code as the symbolic and historical foundation of the protection of human subjects in biomedical experimentation and research, since it produced the first definition of the crucial notion of informed consent (see Moreno 2000).
However, I thank Hames and Hill for their documentary research efforts on the developments in bioethics in the U.S., Canada, and Australia. I hope that my Brazilian examples will likewise be useful to them. I would also recommend that they take a look at the Helsinki VI Declaration of 2000 (more recent and universal than the U.S. Belmont Report of 1979, which they suggested as a reference).17
2) Another notion must be emphasized yet again here: the exchange of blood samples for trade goods can never be an acceptable substitute for informed consent. However, Hames confirms that this is what Neel and Chagnon’s team did in the field during their AEC-funded project from 1966 to 1972: "It is clear that the Yanomami gave their blood in exchange for trade goods and it was done on a voluntary basis." In his second paper, Hames provides more information that is relevant to our debate by reporting a phone conversation he had with Chagnon (March 3, 2001), who discussed how he explained Neel’s research to the Yanomami before blood samples were collected in exchange for trade goods. According to Hames, Chagnon told them that "Neel’s team wanted to examine their blood in order to determine whether there were things that indicated whether or not they (have) certain kind of diseases, especially shawara (epidemic diseases) and that this knowledge would help treat them more effectively if they became ill."
This testimony is fascinating, since it shows that the explanation of blood sampling for genetic research that Chagnon gave the Yanomami linked it directly to a possible health treatment for epidemic diseases. This may have led the Yanomami to think that the blood drawing in itself could help cure them. The context was indeed perfect for them to draw precisely this conclusion. Chagnon started giving the Yanomami this explanation a year before Neel’s team arrived; the team showed up just when the epidemic was beginning, and then collected blood samples and administered vaccinations and treatments while the measles were raging.
Furthermore, given the Yanomami’s perception of Western therapeutic practices, Chagnon’s explanation probably only confirmed to them that blood collecting was indeed part of a treatment practice for the epidemic that was afflicting them at the time. Anthropologists in the Amazon have often noted the preference that many Indians have for injectable medicines, which, from their cultural point of view, they consider to be more powerful for dealing with intrusive supernatural pathogenic objects or aggressions (Coimbra and Santos 1996:419-420). For the Yanomami, according to my ethnographic observations in Brazil, the body is a mere "skin" (sik+), while the "vital essence" (utupë) is located in the "deep interior" (uuxi) or "center" (m+amo) of the corporeal envelope (Albert and Gomez 1997:83, 87-115). Such a cultural conception (or a local variation of it) must have induced the Orinoco Yanomami to interpret blood-taking procedures of 1967-68 as therapeutic acts. As Coimbra and Santos (1996: idem) aptly observed, it is precisely because of these kinds of symbolic representations that Indians are "more ‘susceptible,’ culturally speaking, to submitting themselves to blood sampling" and why "researchers rarely report great difficulties in obtaining blood samples."
In the final analysis, not only did Neel’s blood collecting make no positive contribution to the Yanomami’s medical treatment during the 1968 measles epidemic, but it probably also had a negative impact in the way he organized it (indeed, Lobo et al. 2000 and Turner’s first paper suggest that the priority he accorded his research agenda contributed to the ineffectiveness of the vaccinations in curbing mortality).18 Neel then published a paper in a scientific journal about the measles vaccinations he conducted or supervised among the Yanomami in Venezuela and Brazil during the 1967-68 epidemic (Neel et al. 1970). To this day, I still do not see how his blood sampling or research significantly helped the Yanomami in treating their epidemic diseases, as they were promised if they agreed to let their blood be drawn (a promise that, in their eyes, was reinforced by the delivery of trade goods). The Venezuelan and Brazilian Yanomami have kept on dying in the same way for three decades after Neel’s project.
So I will grant Hames this point: perhaps I was wrong to think that no explanation had been given to the Yanomami to obtain their consent for Neel’s blood sampling and that all he did was to give out trade goods (but see Appendix I, with Davi Kopenawa’s testimony of the blood collecting in Toototobi in 1967). I now realize that the situation was even worse than that. Not only were blood samples obtained through trade, but the way Neel’s research was explained, the manner in which the Yanomami interpreted it, and the context in which it was carried out probably encouraged them to think that the blood drawing was part of current or future medical treatments.
So here we are, finally, with a true problem of double standards. When the issue is justifying why biomedical researchers cannot lose time in medically treating their "subjects" in the field, Hill tells us that "researchers [are] not clinical practitioners." But when the time comes to convince the Indians to give their blood, things change. At this point, Hill turns researchers into physicians again by suggesting that biomedical research can help improve health conditions. This ambiguous connection between research and health improvements encourages indigenous "subjects" to think that this statement refers to their own health situation, when, in fact, it refers to some as-yet unforeseen high-tech health benefit for capital "H" Humanity (through future applications of advances in molecular medicine).
Offering this sort of misleading association between blood sampling and some later ill-defined health care improvement is far from being an archaic procedure in biomedical fieldwork (nor is the more rustic trading of trinkets for blood). It is apparently still common practice for researchers to present this kind of "explanation" to indigenous people and to keep it sufficiently vague to more easily convince them to impart their consent. In fact, this only provides human genetic scientists with an ad hoc field adaptation of a longstanding "selling point" of their discipline, as illustrated in the Human Genome Diversity Project (HGDP) home page:
The collection and analysis of DNA samples may, in conjunction with epidemiological evidence, help lead to the identification of genetic factors in some human diseases and eventually to ways to treat or prevent those diseases.19
Foisting this argument on indigenous people who are in poor health to gain their consent for biological sampling seems all the more cynical in that collecting genetic materials from them was given high priority because (as early versions of the HGDP made it clear) they are "groups with unique attributes that are in danger of extinction" (HGDP n.d.; Santos 2001).
Thus, like Hill, I believe that "indigenous populations should have a critical voice in research protocols brought to their communities and whether they wish to participate in any particular study" (a statement that contradicts the strange scenario he conjured up elsewhere in his second paper, in which the Yanomami could be forced to give blood). I also agree with him that "they should also be better informed about potential benefits of such research by people who understand them." But the problem here is precisely that, in the case of the Yanomami and many other indigenous people, most biomedical fieldworkers do not bother much with properly informing the Indians about their research (as in Neel’s and Roche’s cases). Instead of putting their biological sampling at risk, they generally prefer to use vague and deceptive explanations and to substitute consent with trade goods. They then fly back to their careers in their laboratories, leaving local health professionals from NGOs, missions, official health organizations, and mere "anthropological activists" (in Hill’s terms) to cope with the critical health situation of their erstwhile research subjects.
Such behavior demonstrates a short-sighted view of the social responsibilities of scientific research, which, I believe, is the principle cause of the growing hostility on the part of local people (indigenous and non-indigenous) against blood collecting and human genetic research in Third World countries. My contention here is that in no time or circumstances the wider interests of an abstract capital "H" Humanity as defined by a party of scientists ever justify the unethical treatment of any concrete group of human beings.
3) What is worrisome is that even today many biomedical researchers still do not appear to truly subscribe to the concept of informed consent contained in their codes of ethics, at least as far as indigenous people are concerned. They pay lip service to it, since publicly they cannot do otherwise, but their behavior in the field reveals that they think indigenous people are culturally unable to understand what scientists do (that is, capital "S" Science). This being the case, the next best way to gain their consent (if not really "informed") is to barter for blood samples and/or pass out deceptive explanations about health improvements. It is unfortunate to see an anthropologist giving support to such a position, as Hames seems to do, when he writes that Chagnon "clearly could not give the Yanomami a crash course in infectious disease, genetics and epidemiology to more fully explain the purposes of the research," and that the story about his substitute explanation about improving the treatment of shawara epidemics "was consistent with their ability to comprehend the research."
Biomedical scientists ought to make a sincere effort to improve their approach to the process of explaining their research to indigenous people. Let us first consider two extreme views on informed consent. On the one hand is a degré-zéro position, in which researchers who believe that linguistic and cultural communication with a subject group is tenuous, if not impossible, conclude that the human right to informed consent of this group can be dismissed for the sake of biomedical investigation. This view is ethically unacceptable, since, as I showed in my second paper, it practically reduces research with indigenous (or other vulnerable) people to the standards of animal experimentation. On the other hand is a radical conception of informed consent, which insists on an in-depth explanation of the most technical and theoretical aspects of the methodology and goals of the research. But if such a detailed explanation is required, biomedical research could be carried out properly only on scientists themselves as subjects.
I think (as probably Hill and Hames do) that we must avoid these equally absurd extremes and, instead, encourage a more respectful process of negotiation and participatory research procedures to be opened up between researchers and indigenous people, as suggested in the FOIRN seminar mentioned above. But such a negotiation process cannot be treated as a mere interethnic business of buying and selling information, as Hill put it. It should involve a culturally sensitive and instructive explanation (like those needed for research volunteers from the general public in our society) of the research methods and of the immediate and wider goals of the project (since, as Hill rightly noted, "something about how scientific data are used can be expected to influence native decisions about whether or not to participate in research"). It should also involve explicit negotiations about the collective health benefits to be obtained by members of the group—not necessarily from the research itself (unless commercial outcomes are planned)—but in compensation for their collaboration in it.
Biomedical researchers must understand that the neo-colonial practices of trading goods for blood samples or masking the purposes of blood collecting by linking it to some kind of healthcare-related practice are unethical and can only be seen as anachronistic means of luring their subjects into consent. Similarly, anthropologists must understand that reciprocating the knowledge they gain through their research by merely paying their "informants" and hosts (or even by redistributing royalties) does not constitute a sufficient form of reciprocation. Through the local knowledge s/he acquired from the people that s/he studies, the sociocultural anthropologist inevitably becomes a special cultural-political link to the outside world for them (see Albert 1997). As Hames’s account of his fieldwork negotiations admirably demonstrates, this compensation must also encompass the indigenous community’s request that the anthropologist engage in advocacy to support their rights and welfare.
Yanomami blood samples and DNA extraction: a new frontier of informed consent
It is unfortunate that Hill begins his answer to my preoccupation with the current use of Neel’s Yanomami blood samples by grossly misrepresenting my position on this issue, charging twice that I see no practical value in human genetic research and want to induce the Yanomami to demand that the samples be destroyed. What constructive progress can we reach in this debate with such attempts to caricature opponents as hysterical anti-science obscurantists?
Let me set the record straight. In my first paper, I expressed concerns about the fact that Neel’s Yanomami blood samples, which are apparently stored at Pennsylvania State University at the disposition of HGDP researchers to be processed with new techniques to extract DNA. There is indeed a new ethical issue at stake here, since this genetic material extraction might be conducted without any effort to consult the Yanomami about this new scientific use of the blood of their dead relatives. I therefore recommended that an independent bioethics commission should also investigate the location, legal status, and current use of these samples, and that the Yanomami should be informed about the results of this investigation.
Hill responded that he "thinks that the Yanomami should write to the guardians of those samples, requesting that research be initiated with them that could benefit the Yanomami community." I agree with him that negotiations would be an appropriate way of dealing with the situation. However, the responsibility for opening these negotiations should come from the scientists who are now in possession of Yanomami blood samples and may eventually reprocess them. They should contact Yanomami representatives and organizations in Venezuela and Brazil to inform them properly about their research plans and to ask for their points of view about the destiny of these blood samples. My point here, once again, is to defend the Yanomami’s right to a decent procedure of informed consent. Whether they eventually ask that the samples be destroyed or whether they overcome their cultural aversion to bodily remains and negotiate some form of compensation for their participation in future research is not up to me to decide.
I am glad that Hill agrees wholeheartedly with me on the necessity of protecting Yanomami blood samples from commercial patents when he states: "any use of Yanomami genetic material must be approved by them beforehand and must include fair compensation and share of profits. Unauthorized commercial use of Yanomami genes should immediately lead to a lawsuit." Human population genetics studies of the indigenous peoples of Amazonia (among the most studied in the world) were initially based on correlating the frequency of blood markers, which led to findings of a highly academic nature. But times have changed and recent technical advances in human genome research now permit scientists to study DNA directly, opening the way to commercial uses of genetic materials (Coimbra and Santos 1996:420). My concerns over the possibility of this occurring in the case of the Yanomami’s stored blood are thus far from being imaginary, given the considerable number of samples collected by Neel’s research team in the 1960s and ‘70s and kept in laboratories in the U.S. (and probably other countries).
As a matter of fact, the commercial circulation of indigenous cell lines apparently takes place without many obstacles, even if it does not often go to the extreme of patenting indigenous genes (which, however, has occurred on several occasions: see Harry 1995; Friedlander 1996; Cunningham 1998). Such ease reveals the absence of adequate standards regulating their transfer from academic biomedical research circles to the commercial circuit. Alcida Ramos (2000) gives a relevant example that recently involved the Karitiana and Surui Indians of Rondônia State in Brazil. These two groups
...were the object of genetic research (unauthorized by the Brazilian Government) by Francis Black, from the Department of Epidemiology and Public Health, Yale University. Black and his team published an article in 1991 in Human Biology (Kidd et al. 1991) where they presented their findings among the Karitiana, the Surui and the Mexican Campeche. Candidly as a matter of course, they deposited "for each population five cell lines from unrelated individuals... in the National Institute of General Medical Sciences (NIGMS) Human Genetic Cell Repository at the Coriell Institute for Medical Research (Camdem, New Jersey) [which were then] publicly available" (1991:778). In April 1996, Coriell Cell Repositories was advertising the sale of Karitiana and Surui DNA samples… (Santos and Coimbra 1996:7, Folha de São Paulo, June 1, 1997:5-15)
As one can imagine, this episode had widespread negative repercussions in the Brazilian media and public opinion. The Brazilian government’s indigenous affairs agency (FUNAI) considered suspending all biomedical research authorizations with indigenous peoples; the Indians filed a formal complaint with the regional office of the Federal Attorney General; and the Brazilian House of Representatives addressed the issue in 1998 during hearings concerning access to genetic resources (Santos 2001:3-
4). Nevertheless, individual cell lines of the Karitiana and Surui are still for sale for US$75 (DNA samples for $50), as anybody can check on the HGDP-linked Coriell Cell Repositories website (http://locus.umdnj.edu/nigms/cells/humdiv.html, search "Karitiana"). As Santos notes (2001:20, n. 3), "Even considering that these funds might aim at maintaining the cell lines and DNA samples," this commercialization "create[s] major discomfort, even more so because health and socioeconomic conditions of the two groups are precarious."
Let me also give here the example of the Ticuna Indians in the Brazilian state of Amazonas, as described by Hammond (2000):
Among the collections of the Alpha Helix’s 1976 expedition [see Salzano 2000] were samples from the Tikuna (Ticuna), an indigenous people from Brazil’s far west (as well as Colombia). Unlike most of the Alpha Helix samples, white blood cell lines were established from Tikuna blood by researchers, including former Human Genome Organization (HUGO) head Sir Walter Bodmer of Oxford University and Julia Bodmer of the Imperial Cancer Research Fund (ICRF), both of the UK. Although collected nearly 25 years ago, the cells remain in wide circulation among scientists, travelling the world like few, if any, Tikuna have. Among their adventures, the Tikuna cells have been across Europe and the US, and even shipped back to South America to researchers in Argentina. The cells have been used in research for publications in Genetics, the American Journal of Physical Anthropology, the American Journal of Human Genetics, and others. The Tikuna cells have also been incorporated into a major tool for immunology research, the HLA Diversity Cell Panel. Old stuff? Unlikely, given that, like many ex situ plant collections, the cell lines value seems to appreciate with time. As recently as 1997, Hoffman LaRoche researchers at the company’s Roche Molecular Systems division—including the legendary Henry Erlich, one of the creators of polymerase chain reaction (PCR)—were working the cells over and elucidating new information about immunological genetics. The Tikuna are probably unaware of either their important contribution to science or the potential commercial value of their cell lines. They might not even know about their cell lines at all. If they did, would they approve? Is the work done on their cells in accordance with their culture and wishes? There’s no way to know for sure until one of the many scientists using Tikuna cells actually takes the trouble to ask them. (Hammond 2000)
As I pointed out in my first paper (also drawing on Hammond 2000), all these facts undoubtedly raise new and fundamental ethical questions that go beyond the issue of obtaining informed consent for blood sampling, such as the population genetics researchers carried out in the 1960s and ‘70s. Santos put it well à propos the Karitiana-Surui samples:
It was considered troubling that blood and DNA samples could be stored, transformed into cell lines and made widely available without explicit individual and community consent for so. There was considerable concern that, while consent may have been given for a particular project, this long-term storage makes it possible to use samples in ways not originally described or intended. (Santos: idem)
The approach to informed consent advocated in the HGDP "Model Ethical Protocol for Collecting DNA Samples" (point V.C.) does not apply to the controversial question of reprocessing old samples nor does it offer a satisfactory solution for the multiple, circulating uses of new ones :
Samples will be taken to one or more locations to be stored, analyzed, and shared with other researchers from around the world. As part of this last disclosure, the researchers must make clear [in obtaining consent] that the samples may be used for a variety of different projects in the future, including projects that are not currently anticipated.21
Supposing that these facts were fully explained, who would be expected to give consent to such a blind agreement for his or her blood DNA to be used in unknown ways, now and in the future, by an unknown number of laboratories around the world? It is obvious, in this context, that guidelines for negotiating agreements for each stage of research are needed, especially if scientists wish to gain the confidence of indigenous peoples.
As to the possible lawsuit that the Yanomami could file against U.S. institutions that were (and still are) behind past (and present) biomedical research carried out among them without proper informed consent, I want to add some brief comments. In my first paper, I stated that lawsuits could arise from an analysis (preferably by a bioethics commission established to study the case) of the dubious procedures used to gain consent from the Yanomami (among other problems) during Neel’s blood collections and Roche’s radioiodine experiments. I think that legal actions might also be taken against the extraction of DNA from old blood samples and its present scientific use (not to mention its eventual commercial patenting), which likewise might occur without obtaining any informed or formal agreements with the Yanomami. Thus, instead of accusing me of inducing the Yanomami to pursue "frivolous lawsuits," Hill might consider helping to ensure that a bioethics commission, not only an anthropological debate, will analyze whether these research procedures, past and present, conform to prevailing ethical codes. This would indeed be a great contribution to improving the field practices of biomedical researchers and encouraging them to observe their own professional norms more carefully.
Hill was thoughtful for offering advice that lawsuits should be filed against anyone who threatens Yanomami rights in Brazil. However, he may be happy to learn that quite a number of legal cases have already been initiated by Brazilians to defend the Yanomami. I reported the exemplary juridical proceedings initiated by the Federal Public Ministry and federal judges in the Haximu massacre case. Another judicial case against invasions of Yanomami land by ranchers is currently being pursued in the federal courts, and a lawsuit against illegal tourism in Yanomami territory was recently filed by the Attorney General. I must inform Hill that lawsuits on behalf of Indian rights, based on the 1988 Brazilian Constitution, are the basic work of the sixth chamber ("Indian Communities and Minorities") of the Federal Attorney General in Brasília, who, being totally independent of the executive branch, fulfills such responsibilities with great competence and courage.22
But to end here on a positive note about the relations between biomedical researchers and indigenous people, and to make it very clear—if it is still necessary—that I am not advocating any absurd anti-scientist position (as Hill seems to suggest), I should point out that, fortunately, socially concerned biomedical researchers do exist. A
fine example is the remarkable work of Alexandra de Souza (Souza et al. 1997) on tuberculosis among the Yanomami. Her research was conducted at the request of Brazilian health and indigenist authorities and in close consultation with the Yanomami and local physicians and health professionals. It represented a major step toward increasing awareness of this health calamity and prompting improvements in local-level treatment programs (Fackelmann 1998).
As Santos’s (2001) analysis demonstrates, the creation of the HGDP project was envisioned as a high-tech molecular biology project for the turn of the twenty-first century; nonetheless, it has remained embedded in an ethical and political philosophy frozen in the 1960s. With its ideological views about vanishing peoples and genetic identity loss, the HGDP has been reluctant to acknowledge the contemporary voices and agency of native peoples. Its ethical parameters were recently revised (1997) under pressure from indigenous organizations and many others. However, its guidelines still lack precision, adequate breadth, and formalization. Even worse, the field practices of most biomedical researchers continue to be a far cry from these norms, no matter how adequate they are.
If biomedical researchers who work among indigenous people want to avoid further rejection or condemnation, they should have the humility to improve their ethical norms in substantial ways and to follow them in field practice with determination. In each and every case, scientists should engage in appropriate procedures for seeking informed consent and negotiating balanced reciprocity with indigenous people. The observance of an improved, fairer, and widely accepted ethical framework for guiding the relationship between researchers and indigenous people must not be seen as a way to thwart research—on the contrary, it is the absence of such guidelines that is becoming an increasing hindrance to it (Greely 1998:625). If the genetic data of indigenous peoples makes them essential for future human genomic research and its benefits for Humanity, they should be treated as fully-respected social partners, not as natural "populations" for gene mining (idem).
Conclusions
I wrote at the end of my first paper that anthropologists should avoid collaborating with biomedical researchers when the latter disregard their own ethical norms and dehumanize indigenous people as mere biological "subjects" for research and experimentation. I emphasized that such collaboration represents a serious negation of the foundations of sociocultural anthropology, since its primary commitment is to the "natives’ point of view." By this, I mean that ethnographic research should analyze indigenous cultures and societies by using their intellectual categories and models of agency as a point of departure (which does not exclude other data or analytical frameworks). In the ethical domain, this implies that, since indigenous peoples are marginalized minorities, anthropologists should support the expression of native political views and promote their individual and collective rights. Hill abruptly labels this an "anthropological phobia against objective assessment of indigenous culture."
Does this kind of irresponsible rhetoric imply that he situates himself outside of sociocultural anthropology and that he recommends substituting it with an ethology of "anthropological populations" (an interesting expression borrowed from Weiss 1976:363)? If so, does this not imply that native (or minority) peoples’ cultural and political expressions are insignificant to science and irrelevant to ethics? Or should we instead listen to Hill’s earlier, more ecumenical appeal to foster better communication and symmetrical self-appraisals in order for anthropology "to survive as an integrated discipline with multiple approaches and multiple areas of interest"? I definitely prefer this latter, more tolerant approach for our debate. That is exactly why I have tried to make a tangible contribution, based on my personal experiences with the Brazilian Yanomami, toward our collective effort to achieve a more insightful, useful evaluation of the ethical dimensions of conducting biomedical and anthropological research among indigenous peoples.
Finally, I wish to stress once again that we must find ways to translate the arguments over Darkness in El Dorado into concrete efforts to improve the present health conditions of the Yanomami in Brazil and Venezuela, as well as their land situation, which is crucial to guaranteeing their survival and well-being. I thus propose four basic and practical recommendations:
(I) To encourage the constitution of an independent bioethics commission to analyze the ethical conduct of past and present biomedical research with the Yanomami;
(II) To give full support to the El Dorado Task Force set up by the AAA and request that it take into account the contents of our debate when relevant to the following issues it has decided to investigate:
1. "That a program of vaccination of Yanomami undertaken by James Neel in 1968 caused an epidemic of measles…"
2. "That practices of anthropologists in the field were unethical, ignoring legal constraints and ethics codes and tending, either through oversight or purposefully, to exacerbate violence, spread disease, and violate the dignity of individual Yanomami through, for instance, inappropriate sexual relations…"
3. "That damaging representations of the Yanomami were published and repeated even after such representations were criticized as likely to cause them harm…"
4. "That anthropologists, especially Americans, and others generally ignored threats to the Yanomami and gave the highest priority to continuing established programs of research of no immediate benefit to the Yanomami..."
5. "That anthropologists and others working with the Yanomami have not adequately addressed malnutrition, disease, and disorganization among them…"
6. "That experiments involving the injection of radioactive iodine were carried out among the Yanomami without attention to the principles of informed consent then in effect…" (American Anthropological Association, 2001)23
(III) To urge that a joint declaration by AAA and ABA in support of Yanomami land rights in Brazil be issued and widely disseminated. This would be particularly important at this moment, given the recent onslaught on their Constitutional guarantees to their territory. The public declaration of the Ministry of Defense against Yanomami land rights (discussed in my second paper) has since been followed by the creation (on March 29, 2001) of a "Parliamentary Committee of Investigation into Indigenous Lands Demarcation" in the the Brazilian Senate, on the initiative of Senator Mozarildo Cavalcanti (from the state of Roraima, where most of the Yanomami live).24 This committee will seek a reduction in the size of Yanomami lands, which will be devastating to their physical and cultural survival.
(IV) To collaborate with Venezuelan anthropologists, physicians, and biomedical researchers in campaigning for an urgent investigation into the health situation of the Yanomami in that country, as a preliminary step toward creating a permanent health care infrastructure as soon as possible throughout the Yanomami’s entire territory.
NOTES
[1] In 1993, the World Development Report of the World Bank estimated that "women ages 15 to 44 lose more Discounted Health Years of Life (DHYLs) to rape and domestic violence than to breast cancer, cervical cancer, obstructed labour, heart disease, AIDS, respiratory infections, motor vehicle accidents or war." See document posted at: http://www.unfpa.org/modules/intercenter/violence/index.htm. See also:
http://www.hrw.org/wr2k1/women/women2.html
[2] See the Report of Representative Marcos Rolim on the case posted at:
http://www.rolim.com.br/ASCYANOMAMI.htm
[3] In a letter to Time Magazine, J. Shapiro (1976), who conducted fieldwork with the Yanomami in Brazil in 1968, wrote: "Now in the light of pop ethology and sociobiology, the Yanomamô are seen not only as ‘wild Indians’ but as one short step away from a baboon troop. The familiar tendency to look upon other groups of people as being less fully human than ourselves here masquerades as science. I would like to make clear that the Yanomamö are not the missing link."
[4] My final report on the case (Sept. 27, 1993) for the press was published by the Brazilian daily Folha de São Paulo on Oct. 3, 1993, and the Venezuelan daily El Nacional on Oct. 10-11, 1993 (for an English translation, see Albert 1994). It is posted at: http://www.socioambiental.org/website/epi/yanomami/anexos/haximu
[5] More details on the Haximu massacre and the current legal status of the case can be found in the recent report of Luciano Mariz Maia (2000), a Federal District Attorney. A summary of this document is posted at the same website cited above in note 4.
[6] E-mail of Napoleon Chagnon to CCPY, Feb. 20, 2001: "I read with great interest the excellent article by a group of Brazilian medical experts on the 1968 measles epidemic in Brazil [sic]."
[7] The deteriorating health situation of the Venezuelan Yanomami in isolated areas along the Brazilian border (outside the zone of the Salesian mission health facilities) has become so grave that the Indians must look for medical help at the health posts run by the "URIHI-Yanomami Health" NGO in Brazil. Data for 2000 indicates that 453 Yanomami from Venezuela received medical treatment in four locations: Auaris, Xitei, Homoxi and Toototobi (CCPY Bulletin nº 12-25/04/01).
[8] As one example of the work of indigenist medical personnel in Yanomami territory, the CCPY-MSF expedition involved a 45-day trip, walking 350 km in the jungle from the CCPY outpost on the upper Demini (Parawa u) in Brazil to give medical assistance to eight Yanomami communities (assisting 550 persons) on the upper Siapa in Venezuela. At the end of the trip, the CCPY-MSF emergency team (conducted by Dr. Claúdio Esteves de Oliveira, who is now president of "URIHI-Yanomami Health"), was airlifted from the region by a Venezuelan Air Force helicopter.
[9] Among the Principles of Medical Ethics adopted by the American Medical Association (AMA), we find, for example: "VII. A physician shall recognize a responsibility to participate in activities contributing to an improved community." Posted at: http://www.ama-assn.org/ama/pub/category/2512.html
[10] I began my fieldwork in the Brazilian Amazon during the opening of the northern route of the Transamazonica Highway as part of an assistance project to the Yanomami (Projeto Perimetral Yanoama), organized by the University of Brasília and FUNAI. In those days (1975-76), without any medical program in the area, basic paramedical treatment was a constant part of my activity as a field anthropologist. In the absence of better health care services, anthropologists commonly get involved in this kind of improvised paramedical activities.
[11] See ABA’s Code of Ethics posted at:
http://www.unicamp.br/aba/secretaria/03_etica.htm
[12] Resolution 304/2000 (specific to indigenous communities) is posted at:
http://www.ufrgs.br/HCPA/gppg/res304.htm
Resolution 196/96 (which is more general) is posted at:
http://www.ufrgs.br/HCPA/gppg/res19696.htm
FUNAI Normative Instruction Nº 01/95PRESI is posted at:
http://www.ufrgs.br/HCPA/gppg/funai.htm
[13] See a report on this seminar organized in conjunction with the Socio-Environmental Institute, posted at:
http://www.socioambiental.org/website/noticias/indios/20001127.html
[14] See the Declaration of Helsinki I posted at:
http://www.irb-irc.com/resources/helsinki.html
[15] Hill unfairly distorts my position on this issue by claiming that I see "little value in Roche’s study of goiter and insists that such research could not foreseeably benefit the Yanomami." As any reader of my first paper can verify, I never wrote such a thing.
[16] Posted at: http://tis.eh.doe.gov/ohre/roadmap/achre/chap12_4.html
[17] Posted in Spanish at: http://www.ufrgs.br/HCPA/gppg/helsin6.htm
This same website has a good link to a list of "Guidelines, Norms, and Laws in Health Research": http://www.ufrgs.br/HCPA/gppg/diraber.htm
[18] See also Lindee (2001:274): "I wondered, too, if Neel might have sought the resources and the personnel to make possible a comprehensive and well-coordinated vaccination program instead of a haphazard stopgap program as an add-on to a project focused on other, more important things like blood and data collection."
[19] See the HGDP homepage at: http://www.stanford.edu/group/morrinst/hgdp/faq.html#Q1
[20] Posted at: http://www.stanford.edu/group/morrinst/hgdp/protocol.html#Q4
[21] It only refers with no precision to a National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) Working Group on Regulations for the Protection of Human Subjects, Informed Consent for Genetic Research on Stored Tissue Samples (1995).
[22] See the Attorney General’s website at:
http://www2.prdf.mpf.gov.br/sextacamara/biblioteca/jurisprudencia/index.html
[23] See the AAA website at: http://www.aaanet.org/eldoradoupdate.htm
[24] See the Socio-Environmental Institute website at:
http://www.socioambiental.org/website/noticias/indios/20012903.html
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APPENDIX I
Interview with Davi Kopenawa Yanomami
Conducted by Bruce Albert on April 8, 2001, in Boa Vista, Roraima, Brazil
Topic: blood samples collected by James Neel’s research team in Yanomami village of Toototobi, Brazil, in 1967
Bruce Albert: Well, there’s the book that was published by Patrick Tierney, called Darkness in El Dorado. It tells about the research done in 1968 among the Yanomami in Venezuela, about an epidemic and blood research that took place there. But I know that they also first carried out this blood collecting in Brazil, I think...in various places...one of the places being Toototobi, where you used to live when you were young, in 1967. I don’t know if you remember how this research was, do you have any memories of it?
Davi (in Yanomami): Can I speak in my language?
Bruce: Yes.
Davi: Yes, I know about that. In those days, I was still little. I didn’t know much yet. I was still afraid of white people. The white people who lived among us [the New Tribes Mission of Toototobi: NTB] didn’t tell us anything [about it]. Maybe the whites had a conversation among themselves. At that time, there was Keith [Wardlaw, of NTB] and Bruce [Hartman, of NTB].
Bruce: Missionaries?
Davi: They were the missionaries. At that time, our elders still didn’t understand. They thought that the white people were taking blood for no special reason, and so they donated their blood to them. They didn’t say, "Why are the whites drawing our blood?" The missionaries didn’t explain anything to our elders either. They didn’t say to us, "All right, this white doctor is going to draw your blood to examine it. Others might look for diseases (epidemics) in your blood. They might confirm whether your blood is healthy." They didn’t say anything, this was how they wanted to keep us ignorant. They deceived the elders. The whites said things like this: "I’m going to give you a machete... when you come give blood. I’ll give you a machete when you give your blood, I’ll give you fishing hooks!" That’s why people went to them to give their blood. They even took blood from me...from all of us young ones. They drew blood from the women, from the old people, from the youths, from the children, they drew it from everybody. Our names [were called], according to the names of our parents...they kept parents and children together, they kept the blood of parents and children together. When they had the blood from a child, they placed it next to the blood of his father, with his name. I remember that. I had almost forgotten that...I had thought, erroneously, that they had drawn our blood for no special reason. That’s what I had thought, but that was a long time ago; our elders died, the oldest people died, my mother died, my grandmother and grandfather too...after all these deaths, it’s only now that I’ve heard anything said again about that story. Hearing about it now, I really think, "The whiteman didn’t tell us anything! ‘We’re going to store your blood in the cold, and even if a long time goes by, even if you die, this blood is going to remain here’—he didn’t tell us that!" Nothing was said. That’s why now I’m upset, thinking, "What can I did?" Yes. Our elders are no longer here, however, we, their children, are still alive. There are still a few of the oldest alive, a few women. I too am still alive. This being so, we want to ask those white people who still want to examine our blood, "What is there in our blood? What do you want to do with what you’re looking for in it?" The whites, when they examine our blood, they put it in their own blood...they do this because they want to cure themselves, and that’s why they do this. That’s what I think now.
Bruce: What is written in the book is that all the blood samples (there’s a lot of them), they’re being stored in a university and people are using them again to do more research. They did the first research a long time ago, and now they're probably using them to do new research, but they didn’t tell anyone what it’s about. I’d like to know what all of you think about that. Do you think that they should ask your opinions, do you want to discuss things with them? What do all of you think about the fact that the blood is being stored there and that they are going to do new research with that blood?
Davi: Here’s what I think: by myself [or] just the two of us can’t do anything. I have to ask our elders first. I’m going to talk to them. I’m going to get them to remember. Some people are still alive who were among those whose blood was drawn. Some of them are still alive. I’m going to say this: "All right, do you remember those white people who drew our blood? That blood still exists. That’s why they are going to do new research with our blood. Those of you who were around at that time, what do you think about this? I will convey what you, the eldest ones, think and say about this issue. I will say, ‘All right, here is what the elders who gave their blood have said.’" We used to think that the blood was gone, that they had thrown it out. That’s why we will ask, "Why did they store our blood, as if they were cremated ashes?" Other people [who gave blood] have died since then. This is why we will ask, "Why do you want to use our blood, what are you examining it for in this way? You draw blood from others to examine it with machines. What do you white people want from this?" Nowadays, we Yanomami of today—given that our blood is far away, in their university in their country—here’s what we think...here’s what I think: given that the blood of people who have died still exists, we want something given to us in return for what it is worth. Once this is done, the Yanomami must remain alert. When other white people try to do the same thing, we should refuse to give our blood. That’s what I think.
Bruce: Do your people want the blood returned, or do you want them to give something in exchange, in compensation for it?
Davi: (In Portuguese): They should give something... (In Yanomami): The blood is already far away. They already took it far away. They should send items of value for having taken it far away. They should give items of value … they should send money to the whites who are curing [our diseases]...we want items that will cure us.
Bruce: As compensation?
Davi: As compensation! That blood was the blood of people in Toototobi, it is our blood. And we are still suffering illnesses. We still get malaria, we still get the flu. That’s why those who took our blood should compensate us. They should give something in return for what it’s worth to the white people who are curing us and, with the money, they should be able to help us. That’s what I think.
Bruce: That’s what you think, but you’re going to talk with the elders first?
Davi: That’s what I think, but I will talk first with the eldest people, I will discuss things with them first. The eldest people really don’t understand what happened, they don’t know anything about it. They think, "They [the whites] ate our blood or threw it away." Now they'll hear the whole story: Severiano, José, Sansão, Antonio, they’re still alive, I’m going to tell them about it. Norberto, Fialho, Luis, Passarinho, Paulino are also still alive, I’m going to tell them too. I’m going to say to them, "What do you think about this? That blood that they took from us so long ago still exists. Do you want items of value, do you want money for that blood? If you do, we are going to request that we be given something in exchange what that blood is worth." When I talk with them, they’ll remember, "Oh, that’s right! That’s exactly what they did!"
Bruce: Maybe all of you could write a letter ?
Davi: I’m going to gather the words of the eldest ones [telling me], "Yes, do that. Talk to the white people. If they want to give items of value, ask for that. If they want to give money, ask for money and, with that money, buy items of value as compensation. Items that will cure [our diseases], that would satisfy us." When they have spoken, we will write a letter. Later, when it gets to the white people in that university where our blood is kept, they will consider it and think, "Ah, now the Yanomami are getting wise! They want something in return for the worth of their blood! Let’s go ahead and give it!" They will give it...If they want to compensate us for our blood, that will really be right.
Bruce: If they want to do new research with the same blood from long ago, what do you think should be done? Can they decide by themselves or should they talk it over with you? What would be the best way?"
Davi: Even if our blood is from ago, from a long time ago...if they do new research, they should tell us about it. If they tell us about it, we’ll say, "All right. When you want to do it...
Bruce: They should compensate it…?
Davi: …"you should give something in return for what it’s worth. If you give something in return for its worth, that’s good." That’s all we’re going to say. The fact is, they already took away that blood. "Go ahead. But give something in return for what it’s worth. If you go ahead [with your research] without compensating us, we will feel injured and saddened. The elders will feel injured and saddened."
Bruce: They’ll feel saddened...?
Davi: They’re not thinking, "This is what they did with our blood." They don’t know. They’re not thinking, "This is what the white people do with our blood." If they're told the whole story and if they're given something in return for its worth, then they’ll be satisfied. "Yes, all right. That’s what they’re doing. In any case, they already took away our blood a long time ago, when we didn’t know any better." When they do new research with the blood, with the Yanomami’s blood, if there’s nothing else in it, they should tell us in writing, "All right. There’s nothing else in your blood. There’s nothing else in your blood, Yanomami." This is what they’ll say: "Now, if you [whites] want to throw away our blood, you can do so. Empty the blood into the water. Don’t throw it in the fire or in the trash. For us Indians, a long time ago, Omama created blood, that’s why the white people should return it to the water. If this is done, this true ancient being who created us will be content. If you throw our blood away in the trash, if it is burned, that will not be good. If you tell us, ‘All right. There’s nothing wrong with your blood. There’s nothing else in your blood. It’s clear [of diseases],’ then I will ask this of you: ‘All right. If now you want to throw out the blood, empty it into the waters. Return it that way. The waters know our blood. The land on which we live has open eyes and alert ears. It can’t see, but it can perceive. That’s why you should return it [our blood] in this manner.’"
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