Internet Source: Public Anthropology: Engaging Ideas, May 27th 2001
Source URL (Archive.org): http://www.publicanthropology.org/Journals/Engaging-Ideas/RT(YANO)/Hames2.htm
INFORMED CONSENT AND TELLING IT LIKE IT IS
University of Nebraska
Albert brings up the important issue of informed consent. As noted by Peters in his contribution, Informed consent is a creation of the West initially designed to protect and inform human subjects about the purposes, risks and benefits of their participation in medical trials funded by government agencies. As noted by Albert, informed consent guidelines were developed at the Nuremberg trials of Nazi doctors in 1947 and later elaborated in Declaration of Helsinki put forth by the World Medical Association in 1964. In the United States in 1974, The National Research Act and the Belmont Report of 1979 created a set of regulations regarding informed consent and requirements for ethical research. This led to the establishment of Institutional Review Boards in 1981 to ensure that local researchers followed these guidelines. Importantly, social and behavioral scientists were included in these regulations because of the realization that some investigations might have negative consequences (e.g., emotional stress) for participants especially if subject anonymity was not maintained. There is a growing literature on the nature of informed consent as it applies research among indigenous peoples much of it spurred by the implications of the Human Genome Diversity Project (Morris, 1999) and the nature of participatory research where communities help identify research relevant to their needs and interests. This welcome change is largely a consequence increased political power of indigenous groups which require researchers to balance their professional interests with those they study.
I cannot deal definitively with the issue of whether Neel and his colleagues conformed to developing informed consent guidelines during the measles epidemic of 1968 or in the course of his routine collection of human biological specimens prior to or after the measles epidemic. In part, this is a very complex historical issue that can begin to be resolved after Neel's achieved materials in the American Philosophical Society have been thoroughly examined (as Turner is doing) and after other members of the research team who worked with Neel during the epidemic have been interviewed or have issued statements. I think this last point is important because characterizations of the epidemic gives the mistaken impression that Neel, Roche, and Chagnon were the only participants. There were others such as Ryk Ward the Oxford University professor who actually helped deliverer some of the vaccine to Neel's team in Caracas before they entered the field as well as pediatrician Hugh Centerwall, dental researcher Charles Brewer, linguist Ernesto Migliazza, and now deceased film maker Timothy Asch. (Incidentally, Ward has stated that the allegations in Darkness in regards to the measles epidemic are "all demonstrably false" (Meek 2001)). Also, ignored in the measles epidemic story are the roles played by the Salesian and New Tribes Missionaries and Venezuelan government official who also assisted in the vaccination campaign. What really concerns me as an ethical issue are the partially informed speculations about the ethics of the measles vaccination campaign. I believe that it has been clearly established that Tierney made numerous fundamental errors (described to some extent in Turner and Albert contributions) on this issue yet people continue to speculate based on an incomplete information colored by Tierney's questionable handling of the documentary evidence.
Albert claims that the collection of blood samples (largely for the purpose of population genetic and epidemiological studies) by Neel's team did not meet the principles of informed consent because subjects "should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision" and he later suggests they were "used as involuntary objects of a biomedical research project". First, it is clear that the Yanomamö gave their blood in exchange for trade goods and it was done on a voluntary basis. Albert has no basis to judge whether or not the Yanomamö were informed as to the purposes of the research because he cites no information from Neel's articles or his diaries that deal with what Neel said to the Yanomamö about why they were collecting blood. I am convinced that no such information has been published. Given this is the case, I called Napoleon Chagnon and asked him what he said the to 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 determine whether there were things that indicated whether or not they 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). Clearly Chagnon could not give the Yanomamö a crash course in infectious disease, genetics, and epidemiology to more fully explain the purposes of the research. Nevertheless, it seems to me that he gave them information consistent with their ability to comprehend the research. I would also add, the participants in biomedical research done in the West often do not have a very sophisticated understanding of the nature of the research in which they are subjects. The collection of biological materials from indigenous peoples predates and antedates Neel's research. For comparative purposes we need to know how others have managed the complex issue of informed consent. If these comparisons were to show that what Neel did was standard this would not necessarily settle the issue. Importantly, we need to know whether there existed some sort of double standard in regards to research done on western subjects.
Albert further notes that blood samples collected by Neel are now being analyzed as part of the Human Genome Diversity Project, a research use unforeseen by Neel, and this use breaches informed consent. This is a gray area especially because the standards of informed consent have evolved since 1968 and some (but clearly not all) of the analyses of Yanomamö blood by the HGDP undoubtedly fit the parameters of what Neel asked Chagnon to communicate to the Yanomamö. Most importantly, as Albert notes, no harm was done to the Yanomamö by having them serve as a control for Neel's investigation. In the end, Albert calls for an independent bioethics committee to investigate Neel's blood collecting. I think this a useful idea and I would welcome it to provide us with closure and, more importantly, some guidelines for researchers who engage in future work among indigenous peoples. If such an investigation were to be done, I would not limit it to Neel's research but it extend it to the research done by a sample of researchers who have collected biological specimens from indigenous peoples. Towards this end I think it would be useful if Albert were to describe the informed consent protocols members of the emergency expedition organized by the CCPY (a Brazilian based Yanomamö support group) and Doctors Without Borders (MSF-Holland) when they entered Venezuela to investigate epidemiological patterns in eight Yanomamö village in the upper Siapa. Doing so would help provide us with a potential set of ethical protocols.
We really need good ethical models in this area because our notions of medicine, general scientific research, and informed consent are based on cultural assumptions not necessarily held by indigenous peoples. Peters makes much the same point about our cultural arrogance in this regard. I think we need to find a way to make it relevant to them by making sure it does not only not breach national or international ethical standards but the ethical standards of the people we study. This last point requires that we have a sophisticated understanding of the ethical values held by the people we study. But as we all know, this comprehension develops over time as we continue on our research. Oftentimes we learn those standards through blunders in the course of our research. No one has bothered to deal with what the Yanomamö believe about informed consent, risk, and benefit.
As mentioned by Turner, one of the charges made against the vaccination campaign was that Neel did not obtain proper governmental authorization to vaccinate the Yanomamö. Ultimately, I believe that it will be shown that minimally he had implicit authorization as evidenced by the cooperation of the Venezuelan government during the vaccination campaign and through his research collaboration with biomedical researchers at IVIC, Venezuela's premier government supported research institute. The evidence clearly indicates that Neel sought permission although at this point we have no record that it was obtained (National Academy of Sciences; Lindee 2000). Nevertheless, let us suppose that he did not have authorization. The obvious question is whether waiting for permission or not acting for lack of permission are ethical alternatives to rushing into the area to begin the campaign. I believe that most would agree that the vaccination campaign was an ethical as well as humanitarian act and that not acting would be ethically suspect. What would Neel's critics say upon learning that he had measles vaccines in the middle of an epidemic but withheld their use for lack of proper authorization? Kim Hill also made the correct ethical decision when he decided to deal with an epidemic even though he was initially told by Peruvian officials to provide no treatment.
In regards to Roche's iodine uptake research, Albert complains there was "an apparent absence of any medical benefit for the Yanomami" and that this is another breach of ethical conduct. This puzzled me because I did not realize that research on a group had to benefit the group being research. So, I called our university IRB compliance officer and posed the question to her. She said that biomedical research has to benefit a group (e.g., those afflicted by Parkinson's syndrome) but that need not be the group studied. Egidio Romero, the director of IVIC (described above) at (http://hokaido.ivic.ve/ivicspan/darknese.html) provides detail on how Roche's research benefited Venezuelan peasants living in the Andes where up to 25% of them show signs of iodine deficiency and associated cretinism. Perhaps the issue of benefit reflects protocols established by the French or Brazilian government. If so, that brings up another complexity to which we must pay attention.
An important issue today is how do we follow our own culture bound notions of informed consent and ethical research and, at the same time, make sure we respect indigenous protocols about how we should behave in the field and the kinds of investigations we can accomplish. This issue is not discussed much by ethnographers, although one of the reasons Chagnon is the target of criticism is that he has provided rich detail of how he collected data and how the Yanomamö reacted to his investigations. To illustrate some of the issues I can only draw on my own experiences working with the Ye'kwana and Yanomamö of Venezuela. When I first arrived among the Ye'kwana of Toki in August of 1974 I met with village leaders and described my desire to live among them and study their economic system and how they interacted with the environment. Obviously I did not use those terms but instead I said I wanted to know what they grew in their gardens, how much time they worked producing food, how it was exchanged, and the like. I also told them that this information would be published and it was the primary purpose of my stay among them. In return for their cooperation with my work I promised to pay all families with trade goods on a periodic basis and assist the village enfemero (local health practitioner paid by the government) in his treatment of the ill1. After listening to the offer, a long meeting of family heads was called and from which I was pointedly excluded. After the meeting, the headman and his deputy informed me that my project was approved. Several months later I repeated this process with neighboring Yanomamö. In addition, I was called upon to assist on land registration with the government and to speak with government officials on issues of concern such as the stocking of the enfemero's dispensary with medicine. In my opinion this is fairly standard ethnographic practice. But the real question is Was the consent truly informed?
What I have described is a classic quid pro quo: informants are compensated by goods and services by the ethnographer. The people studied clearly understand what they are getting and they have the ability to evaluate whether or not the ethnographer is making good on his or her promises. But do the people studied fully understand the benefit the ethnographer gains and if they did would this affect what they wanted from the ethnographer? I believe the answer to the first question is no and I am unsure of the answer to the second. Aside from the publication of scientific articles that advance our careers we sometimes receive royalties for books, photos, and films. Our informants rarely have knowledge of this. At the same time, most of us profit little in this area but I think it notable that both Peters and Hill share royalties with those they have studied.. More recently, the patenting of human genetic materials and indigenous botanical knowledge has become another benefit for researchers. I believe we have an obligation to inform the people we study of the possible monetary benefits and share the proceeds. To answer the second question, I am sure that this will have an effect on our negotiations for compensation.
Peters speaks of the huge power and economic differentials that exist between us and the people we study. This leads me to consider the enormous leverage we have in accomplishing our research and the potential for corruption that that differential causes. Tierney speaks of the thousands of machetes, pots, axes, and other goods routinely distributed by ethnographers to pay for information and cooperation. If you possess such a hoard, the Yanomamö expect such distributions as a matter of course: a man needs but a few of these and those who have dozens should trade them to those who have none of a few. They don't expect them to be free gifts but as a way to establish social relations between the giver and the receiver. They desire to gain these goods as quickly as possible reasoning that if they do not get what you have now someone else may get it soon. This concern is so great that Yanomamö routinely attempt to deter ethnographers from visiting neighboring villages where they know he will distribute goods that otherwise they might acquire. At the same time, a Yanomamö may give something with the expectation of no immediate return and then later use the debt to leverage something from the ethnographer. The pressure to complete research in the allotted period of time may lead ethnographers to unethically use their wealth to gain information over a short period of time that he was likely to gain as a matter of course if he or she had planned to stay in the field for many years. Likewise, Yanomamö desire to gain goods may lead them to provide information that they would not ordinarily divulge.
More subtlely, we use our powerful medicines to treat all manner of ailments. I believe that most of us regard the treatment of the illnesses as something we do as a kind of generalized reciprocity (using Sahlins' term): a kind of sustained one-way flow from us to them. Still, this leads to an ethical dilemma since the Yanomamö are chronically ill. We could spend nearly all of our time in the field treating illnesses until we exhausted our medical supplies. At the same time, a visiting Yanomamö is not hesitant to claim there is an outbreak of malaria in their home village as a way to induce the ethnographer to visit. When the ethnographer arrives he discovers that the ill have spontaneously recovered and everyone is angry that the ethnographer has brought no trade goods. Finally, most Yanomamö are grateful when you cure them or alleviate symptoms. This gratitude may increase the ethnographer's ability to pursue a topic he formerly was unable to pursue.
Martin brings up the issue of Chagnon's portrayal of Yanomamö violence being used by Brazilian civil and military authorities to justify control or partitioning of Yanomamö land.2 This is the central issue I deal with in my initial contribution to this discussion. Additionally, she notes a conversation Chagnon (1989) had with a Yanomamö man regarding the desirability of "law and police" to bring a halt to Yanomamö violence. Following Albert and Ramos (1989) and the Association of Brazilian Anthropologists (da Cunha, 1989) she remarks that this also is used by military authorities to justify control of the Yanomamö. Perhaps this is so, but I have my doubts for two reason. First, it is unclear from either Albert and Ramos or da Cunha whether the official involved had either read Chagnon's report or news releases of the report. And second, as I mentioned in my first contribution, multiple accounts of Yanomamö warfare predates Chagnon's research and use of ethnographic descriptions by powerful bureaucracies are post-hoc rationalizations to justify what they were going to do anyway. If Chagnon had never done research among the Yanomamö, Chief of Staff General Banya Denys could have used ethnographic research by half-a-dozen other anthropologists to rationalize his position.3 At the same time we might ask whether it is true that some Yanomamö believe that police are useful? Salamone's contribution to his own edited volume on the Chagnon-Salesian4 controversy quotes a Yanomamö man saying this to him:
Why do I want the Military [sic] to live here? It is because people fight. it [sic] is because they take women by force. That is why I want them to come. I said: 'Send the military here so that we 'II [sic] not fight among each other.' (Salamone, 1997:79)
I have no idea of how widespread this desire is among the Yanomamö. I am sure, however, that most Yanomamö are completely unaware of the numerous downsides of military or police rule. At the same time, it is clear that many of the Yanomamö interviewed by Salome are appreciative of the role that missionaries play in reducing levels of violence (Salamone 1997:79, 81,85). Obviously, unlike police missionaries do not rely on use of force to accomplish these ends. Given that Salome's quote of a Yanomamö voice closely resembles Chagnon is he also to be accused of facilitating control of Yanomamö land?
1. I think it useful to point out that my research was supported by NIMH and NSF grants acquired by Chagnon. Through these grants Chagnon purchased a large quantity of medical supplies and distributed to expedition members. He explained to us that 95% or more of the medicine we expended would be expended on the Yanomamö and what we did not use at the end of our research should be donated to local Venezuelan health authorities or missionaries. When I inventoried the stock of medicines in the enfermero's house I was shocked to discover that much of what he was too old to safely use and that he had an inadequate spectrum of antibiotics and other medicines. I was able to remedy this situation by supplementing with my own supplies, requesting more from Chagnon, and by purchases when I left the field to resupply,
2. Euripedes Alcantara, an editor at the Brazilian magazine Veja, has been unable to verify any published accounts that Brazilian officials have used Chagnon's writing to justify policy actions on the Yanomamö according to information posted on Chagnon's web site at http://www.anth.ucsb.edu/chagnon.html (click on "Recent news on Neel/Chagnon allegations").
3. Magdalena Hurtado, in a letter to the Anthropology Newsletter (1990), correctly, to my way of thinking, points out that Venezuelan and Brazilian indigenous policy and governmental inaction bear primary responsibility for allowing the spread of disease, theft of land, impoverishment, and mortal attacks on indigenous peoples. What bothers me most about this entire discussion of the possible use to which ethnographic facts can be put is that it turns our attention away from the real forces responsible for the unrelenting war on indigenous peoples.
4. This book deals with the controversy between Chagnon and the Salesian over mission policy towards the Yanomamö. Salamone is highly critical of Chagnon and quite supportive of the Salesians.
Foster, Morris, et al. "Communal discourse as a supplement to informed consent for genetic research" Nature Genetics 17:277-279 (November 1997)
Hurtado A M. Anthropology has had no impact on human rights. Letter to the Editor. Anthropology Newsletter. Volume 31:3. March 1990
James Meek The Guardian October 4, 2000 "Professor denies causing measles epidemic"
Lindee, S. "Neel's Field Trip in 1968". Paper presented at the Annual Meeting of The American Anthropological Association. 16 November 2000.
National Academy of Science Statement on Darkness in El Dorado
Salamone, F., Ed. (1997). The Yanomamö and Their Interpreters: Fierce People or Fierce Interpreters. Lanham, Maryland, University Press of America.
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