Research Institute for Development (IRD)
Paris, São Paulo
The AAA El Dorado Task Force Working Paper 2.2, “Informed consent and the 1968 Neel expedition” (Turner 2002), neglected to take into account some fundamental points that were made by several Brazilian medical and anthropological contributions to the debate on ethical issues raised by Patrick Tierney’s book, Darkness in El Dorado (2000). These contributions have been available on the web since last year and were recently published as a collected text (Albert, ed., 2002). Trudy Turner’s omission of these works unfortunately seems motivated by her primary concern: to justify at any cost the research practices of geneticist James Neel and anthropologist Napoleon Chagnon during their fieldwork among the Yanomami in the midst of the 1968 Orinoco measles epidemic.
For members of an anthropological investigative commission, which is supposed to deal independently with offences perpetrated against an indigenous people (by gold panners, journalists, or scientists), to adopt this defensive posture is quite puzzling. One would think that the ethical responsibility of such a commission would not have been the corporatist defense of researchers, but, rather, the thorough investigation of violations of Yanomami rights by reviewing all information made available by representatives of this people and local experts. Turner’s report (2002) shows that was not the case.
Here I will give an overview of those “forgotten contributions” in an effort to invert the Task Force’s perspective by putting the question of the Yanomami’s rights to informed consent (instead of the preservation of researchers’ reputations) back into the center of the debate.
1) 1968-1995: the legacy of Neel’s “informed consent” procedures
The shocking idea of deadly biomedical experiments on Yanomami subjects prompted me to commission a professional evaluation of Chapter 5 (Outbreak ) of Tierney’s book in October 2000 from a group of four physicians at the Federal University of Rio de Janeiro (UFRJ), two of whom (Dr. Maria Stella de Castro Lobo and Dr. Karis Maria Pinho Rodrigues) had previous experience with medical work among the Yanomami in Brazil. Their report (Lobo et al. 2002) was translated into English, posted on-line in February 2001, and submitted to the AAA El Dorado Task Force to assist its investigation. However, the Task Force barely mentioned the report and Turner completely ignored it in Working Paper 2.2, despite its relevance to the ethics of informed consent.
The report by Lobo et al. revealed 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 indigenous people 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 still 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, despite Neel’s knowledge ahead of time (in late 1967) 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, Shaylor’s letter of December 11, 1967 mentions in its postscript that “There are reports of measles coming from Brazil down the Orinoco.”) This lack of preparation, which had a negative impact on the effectiveness of the vaccination program and mortality control, 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.”
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. 2002:30)
Turner (2002: 4) seems to agree with such a statement when she writes: “We believe that the informed consent techniques used by the 1968 expedition would not measure up to contemporary standards.” However, she considers that Neel’s informed consent procedures were “appropriate and even advanced” as compared to field research practices that were typical in 1968, even though they would be considered “minimal” if judged according to 2002 standards.
The Brazilian physicians’ views are more balanced on this point. Concerning Neel’s possible experimentations, they write that his field methods would have contradicted ethical precepts that prevailed even at the time, “but would not have differed in this respect from many other research projects on human subjects carried out and published in renowned journals in that decade” (Lobo et al. 2002:39).
As a matter of fact, it appears to have been common practice in the United States in the 1950s and '60s to grossly neglect the norms established by the Nuremberg Code on informed consent, especially with ethnic minorities and vulnerable persons. So, yes, when compared to some of the horrendous research practices described, for example, in the impressive book of J. D. Moreno (2000), it is true that Neel’s “minimal” methods could seem “advanced.” But did this make them ethical? Certainly not.
My point is that the “minimal” informed consent procedures used by Neel’s team cannot be explained away today under the pretext that they are minor mistakes of some proto-ethical past and that questioning them now is merely an unfair exercise of revisionist retrospection. Neel’s entourage continued to engage in the same type of conduct during the following decade while carrying out biomedical research among the Yanomami and various other indigenous groups: in Brazil, this included the Krahó, Kayapó-Gorotire, Makuxi, and Wapixana in 1974, and the Ticuna, Baniwa, and Kanamari in 1976 (see Salzano 2000). As one of my recent papers on the El Dorado controversy noted (Albert 2001), even as late as 1995, Napoleon Chagnon was still trying to collect blood from the Yanomami in Brazil without official permission or the prior informed consent of Yanomami representatives, as formally required by the Brazilian law for conducting any research in indigenous territories nowadays. An official document of the Brazilian government Indian agency FUNAI on the subject, entitled "Napoleon Chagnon Case," describes the facts:
In 1995, Chagnon was granted authorization to enter the Yanomami area for an article for the magazine Veja . He was accompanied by the photographer Antonio Luis Torry. When they began working in the area, he tried to collect blood samples from the Indians. When this was reported, FUNAI intervened and ordered him to leave the area. In 1997, the same anthropologist requested new authorization, in conjunction with the University of Roraima, this time for research. FUNAI denied the request. (Furtado Filho 2001)
2) “Informed” consent in the 1968 Orinoco expedition: blood trading and a “working misunderstanding”?
In a recent paper, Raymond Hames (2001) gave details on Chagnon’s methods for explaining to the Yanomami why Neel’s team wanted blood samples in order to obtain their informed consent:
First, it is clear that the Yanomamö gave their blood in exchange for trade goods and it was done on a voluntary basis.…I called Napoleon Chagnon and asked him what he said to the Yanomamö about the purposes of drawing blood. He said that for a year prior to Neel's arrival and during the collection phase he told the Yanomamö in all the villages to be sampled that Neel's team wanted to examine their blood in order to determine whether there were things that indicated whether or not they had certain kinds of diseases, especially shawara (epidemic diseases) and that this knowledge would help treat them more effectively if they became ill (Chagnon, phone conversation 3-18-01). (Hames 2001)
Turner (2002) gathered more pertinent information from another phone conversation conducted by Jane Hill with Ernest Migliazza, a linguist specializing in the Yanomami language and a member of Neel’s expedition in 1968:
In a telephone interview with Hill, Migliazza stated that in each village, the Yanomami were told that the project would look for diseases that were “inside”, “in the blood”…Migliazza observes that that the Yanomami were accustomed to having their blood drawn, since Ye’kwana paraprofessionals visited Yanomami villages regularly and drew blood and administered medications to treat and control malaria…Migliazza believes that the Yanomami found the trade goods offered by the expedition in exchange for samples to be overwhelmingly attractive. Neel had consulted with local missionaries about the type and quantity of compensation, and was following their recommendations in offering as compensation machetes, axes, cooking pots, and other goods. (Turner 2002)
Turner recognizes that these so-called “explanations” carried the implication that the Yanomami would receive medical care based on the findings of the expedition. But her report seems to consider the fact that Neel provided on-site medical treatment during the 1968 epidemic and sent measles vaccines and some medications in 1967-1970 to missionaries stationed on Yanomami land to be an adequate match for what had been promised or “explained” to the Yanomami to let their blood be drawn and thousands of other biological samples be taken. This raises two significant points:
1. Both quotes above indicate that at least two members of Neel’s Orinoco expedition team (Chagnon and Migliazza) recognized that Yanomami blood samples were “exchanged” with their team (“it is clear that the Yanomamö gave their blood in exchange for trade goods,” wrote Hames) rather than obtained through any true informed consent procedure. By the term “exchange” we must understand that these blood samples were acquired from an isolated Amazonian people as a trade for “overwhelming attractive” commodities. But despite the obvious imbalance in information and economic power between the two sides of this trade, and the equally obvious fact that it was intended to substitute for a deficient intercultural “explanation” of Neel’s research, Turner (2002) does not give much weight to the (un)ethical dimension of the situation. She dismisses it in a few lines under the euphemism of “compensation,” as if we were merely dealing with a pro forma , post-informed consent agreement between U.S. citizens in 2002. Once again, the evaluation of this blood trade by the Brazilian physicians (quoted earlier) appears to be much more accurate, which Turner should have taken into account.
2. In light of the evaluation of the medical and research practices of Neel’s Orinoco expedition by these same Brazilian physicians (two of whom, it should be recalled, have worked in the field delivering medical emergency assistance to the Yanomami), it is also illegitimate to consider, as Turner seems to do, that giving ad hoc medical treatment in the field during an epidemic (in what Lobo et al. describe as a very chaotic and inefficient manner) and sending some vaccines and medicines to evangelical missionary posts during a short period (1967-1970) could be considered equivalent to what was “explained” or promised to the Yanomami, i.e., medical diagnosis and future treatment possibilities, based on the blood-collecting procedures (considering Chagnon’s comments, discussed above).
We must not forget that thousands of Yanomami have died in Venezuela and Brazil from measles, whooping cough, flu, pneumonia, tuberculosis, malaria, etc., during more than three decades since Neel’s 1968 blood sampling expedition. Neither Neel nor his research colleagues got involved in any way to prevent such dreadful mortality during this period, as anybody who worked in the field with the Yanomami well knows.
The issue here is not only that Neel’s team unethically traded Yanomami blood samples and that the “explanations” given by Chagnon to the Indians included false promises of future medical assistance (which Turner implicitly recognizes by her tortuous efforts to justify them). What I want to call further attention to is the fact that Chagnon’s and Migliazza’s testimonies indicate that these misleading “explanations” also induced Neel’s indigenous patients to think that the blood drawings were part of¾or even constitute per se ¾some kind of immediate therapeutic practice. That the Yanomami now, as then, continue to strongly associate blood drawing with medical diagnosis can be seen in the 2001 interviews with two Yanomami leaders.
The context was indeed perfect for the Orinoco Yanomami to draw precisely these conclusions. Chagnon apparently 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 simultaneously while the measles were raging. Migliazza also explained that the Orinoco Yanomami of 1968 were already used to blood drawing for malaria treatment (even if drawing blood from the vein for biomedical research and pricking fingers for a drop of blood in malaria diagnosis are different procedures). Furthermore, given the Yanomami’s perception of Western therapeutic practices, Chagnon’s explanations probably only confirmed to them that blood collecting was indeed part of a treatment procedure related to 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) could have induced the 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, it seems that not only did Neel’s blood collecting fail to lead to any future medical assistance promised to the Yanomami (the way it was conducted may even have had negative effects on their health), but also that, given the misleading way in which Chagnon defined its purpose, they accepted it as part of an ongoing therapeutic procedure, which the “overwhelming attraction” of trade goods offerings made even more acceptable. Thus, I do not think that we are dealing here with anything remotely resembling any real informed consent procedure, not even of a “minimal” sort that Turner claims.
3) Yanomami blood samples and DNA extraction: a new frontier of informed consent
Another crucial point omitted by Trudy Turner (2002)¾although appropriately addressed by Janet Chernela (2002a) in her Task Force Working Paper 2.9¾is the fact that Tierney’s investigations revealed that thousands of the Yanomami blood samples that Neel collected are still in the possession of several laboratories in the U.S., notably Pennsylvania State University and the University of Michigan (and probably elsewhere), which are now using them in new genetic research projects. Yet again, no information has been given to the Yanomami nor is any informed consent procedure—now standard practice—planned; indeed, it is doubtful that such considerations even crossed the minds of biomedical researchers, at least before the El Dorado controversy began to touch them.
These facts suggest that new ethical considerations must be taken into account when dealing with the current situation of Neel’s blood sample collection. Although these considerations have been central to the El Dorado controversy, which I stressed in my earlier contributions to the debate in 2001 (see the www.publicanthropology.org website and Albert, ed., 2002), Turner (2002) has been strangely silent on them. Let me once again attempt to call her attention to two of the primary ethical issues the Task Force must address:
1. 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. This point is now well confirmed by several translated Yanomami interviews made available on the Public Anthropology website (see the papers in Round Three of the El Dorado Roundtable by Lêda Leitão Martins  and Appendix I of my paper ) and then again in Chernela’s AAA field report (2002a). Yet again, these Yanomami testimonies and commentaries on Neel’s blood sampling in Brazil and Venezuela have been totally ignored by the corporatist perspective of Turner’s report (2002).
2. The other issue is that these blood samples are now being reprocessed to extract DNA without any information and/or control having been granted to the Yanomami. This constitutes sufficient grounds for concern that serious breaches of Yanomami informed consent rights are still going on and that worse may be expected if nothing is done to rectify this situation. In fact, a recent evaluation of research dealing with Yanomami blood samples at Penn State University raises serious worries about their fate (and that of other biological samples taken from indigenous peoples in Venezuela, Brazil, and elsewhere):
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)
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 several indigenous peoples:
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)
A very serious ethical issue is indeed at stake here: the extraction of genetic material from Yanomami blood has been or is still being conducted (see Chernela 2002a) without any effort to consult them about the continued scientific use of the blood and DNA of their dead relatives, nor are any measures being taken to ensure that Yanomami rights on such matters are being respected. Thus, even in 2002, we see that researchers, in the name of capital S Science, still feel no compunction in disregarding the Yanomami’s status as autonomous human subjects, along the same lines that Neel’s team felt justified in 1968 to lure an earlier generation into letting their blood be drawn for the price of a machete, a knife, an aluminum pot, or some fishhooks, plus a vague promise of future medical care, which never materialized anyway.
Studies of the human population genetics of Amazonian indigenous peoples (among the most frequently researched groups in the world) were initially based on correlating the frequency of blood markers, which led to findings of a highly academic nature. However, 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 (see Coimbra and Santos 1996:420). 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. A team of researchers from Yale University that studied these two groups (without authorization from the Brazilian government) reported that, 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 2002:82-83). 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 (2002:98-99, 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 socio-economic conditions of the two groups are precarious.”
Let me also give 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)
All these facts undoubtedly raise new and fundamental ethical questions that go beyond the issue of obtaining informed consent for blood sampling in the terms that were used in relation to the field practices of population genetics research in the 1960s and ‘70s. Santos put it well again 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 )
One can only regret that Trudy Turner’s paper (2002), in its painstaking efforts to redeem Neel’s and Chagnon’s dubious field methods, tried to avoid so many fundamental questions that would reinvigorate a contemporary reflection on ethics in anthropological and biomedical research. Fortunately, however, Chernela’s reports (2002a, 2002b) made a symmetrically opposite effort to introduce some of these questions into the internal debate of the AAA El Dorado Task Force. But one wonders indeed (as Martins 2002 rightly pointed out) which of these contradictory approaches will, in the end, represent the AAA official point of view.
At any rate, the question of the Yanomami’s rights to informed consent will not find any concrete solution in the context of anthropologists’ debates, even if they are crucial to reshaping its conceptual and ethical arguments out of journalistic sensationalism. In my first paper posted on the Public Anthropology website last year, I recommended that an independent international bioethics commission should investigate the location, legal status, and current use of all of these samples, and that the Yanomami should be informed about the results of this investigation, so that they can make decisions based on the facts. Lamentably, this has not been done so far. However, significant progress has been made recently in Brazil in promoting an official investigation into Neel’s blood sample collection and observing the Yanomami’s rights to informed consent in past and current research with their blood and DNA and that of their dead relatives. In fact, on March 7, 2002, the Brazilian Federal Attorney General’s office sent an official letter of preliminary investigation to the curators of Neel’s blood sample collection at Pennsylvania State University and the University of Michigan. A translation of the contents of this letter is included in Appendix I. Let us hope that it marks the beginning of a full inquiry that will lead to a future of greater respect for the Yanomami’s human rights by researchers, be they anthropologists, geneticists, or others.APPENDIX I
(translated from the Portuguese original)
Document Nº 115/2002/CaDIM/MPF
Brasília, March 7, 2002
Subject: Yanomami blood
We recently learned that, during the 1960s, American researchers collected blood from the Yanomami Indians, whose territory is located on both sides of the Brazilian-Venezuelan border. The blood samples were deposited in the Pennsylvania State University and the University of Michigan at Ann Arbor. We would appreciate your responding to the following questions:
1) Are Yanomami blood samples still stored in laboratories at these universities?
2) If so, how many samples are there and how are they being conserved?
3) What was the source of these samples?
4) What documents exist that attest to the procedures used for obtaining informed consent at the time the blood samples were collected?
5) When were the samples collected in Brazil? Is there documentation pertaining to official authorizations granted by Brazilian institutions for research projects allowing these samples to be collected?
6) What is the current juridical-administrative status of the custody of these samples by these university laboratories?
7) What is the connection between such custody and the use of Yanomami blood samples in the Human Genome Diversity Project (HGDP), as well as the relation between this project and official agencies of the United States government, such as the U.S. Department of Energy?
8) Have these samples been reprocessed to extract their DNA, or have they been used in new research projects?
9) Are there documents stating whether informed consent was obtained for undertaking new research projects with these samples?
10) Have Yanomami blood samples or DNA been released (through donations or sale) for research or other purposes by other public or private laboratories? What type of contract was involved? Which laboratories?
Attached is a copy of the Brazilian Constitution, which attests to the legitimate authority of the Federal Public Ministry to carry out this investigation.
ELA WIECKO VOLKMER DE CASTILHO
Assistant Attorney General of the Republic of Brazil
Coordinator, Sixth Chamber of Coordination and Review,
Indigenous Communities and Minorities
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UNESCO. 2000. “La propriété intellectuelle dans le domaine du génome humain.” Paris (December). Posted at
WEISS, K. M. et al. 1994. “Optimizing utilization of DNA from rare or archival anthropological samples.” Human Biology 66 (5):796-804.ENDNOTES
 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. 2002:29).
 See references labelled COR 5, 22, 38, 39, and 81 in Stevens and Turner 2001, part II.
 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. 2002:42.
 See Stevens and Turner 2001, part III.
 See also Tierney 2000:45-46.
 This episode is documented in Darkness in El Dorado (Tierney 2000: xxi-xxiii and notes on p. 328 citing also documents of the Brazilian Indian bureau).
 See Davi Kopenawa’s interviews in http://www.publicanthropology.org/Journals/Engaging-Ideas/RT(YANO)/Albert3.htm (Appendix I), http://www.publicanthropology.org/Journals/Engaging-Ideas/RT(YANO)/Martins3.htm (Appendix I) and http://www.aaanet.org/edtf/edtfpr_davi.pdf and José Seripino’s http://www.aaanet.org/edtf/edtfpr_seripino.pdf
 It seems to have had a negative impact in the way Neel organized its improvised medical assistance to the Yanomami in the field. Indeed, Lobo et al. (2002) and Terry Turner (2001) suggest that the priority he accorded his research agenda contributed to the ineffectiveness of the vaccinations in curbing mortality. 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.”
 See Albert 1985 on Yanomami conceptions of blood and mortuary rituals.
 Interviews conducted with the Brazilian Yanomami in April and May 2001 (see above note 7).
 For a synthesis on intellectual property and genetic resources, see UNESCO 2000.
 See the editorial in New Scientist 2000.
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