Comments on the Task Force Working Papers,
Section 2.2, on Informed Consent and the 1968 Neel Expedition
My comments concern the approaches and conclusions on the issue of informed consent that the Task Force presents in sections 2.2 and 2.9 in this preliminary report. Informed consent is perhaps the most relevant topic in this entire debate because the material collected without the proper consent of the Yanomami carries current and future consequences for them. It is also important to point out that during conversations and formal interviews with Yanomami leaders this is the issue that they are most interested in discussing due to the continuing storage and use of the blood samples from the group in American research institutions.
These two sections have few points in common and are marked by different approaches and contradictory conclusions. Since the sections were written by different members of the Task Force, they indicate a division of opinions within the group on how to tackle the issue and left me wondering which view will prevail in the final report, which will be endorsed by the Association.
The basic problem with section 2.2 is that it refers exclusively to the American research expedition of 1968 headed by James Neel. This gives the impression that that was the only expedition on which Yanomami samples were collected by Neel and/or Napoleon Chagnon. The research financed by the Atomic Energy Commission is confirmed to have lasted almost a decade (1965 - 1972), but there are indications that it went on for much longer. There are several references to Chagnon collecting blood samples in the 1980s and 1990s. It has been pointed out several times that in 1995 Chagnon entered Yanomami territory in Brazil with equipment to draw blood without permission from the Brazilian government or from the Yanomami village he visited. Therefore, the report should examine the issue with a perspective that goes beyond the 1968 expedition.
Moreover, the main argument presented in section 2.2 is problematic in at least two ways. The survey that is supposed to support the view that the procedures adopted by Neel's team in 1968 met the standards of its time regarding the collection of human samples is actually very uninformative. Besides not making clear the criteria used to choose those particular researchers and how representative they are of a total set of practices, Trudy Turner presents hazy information and conclusions. Turner uses vague statements like, " some explanation of what the individuals were looking at in the blood samples was provided," and "the leaders of the group under study were often consulted…," or " if medical personnel were present, medical and dental exams were given" (emphasis mine). Exactly what type of explanation was given in the other research? How well did those explanations translate the objectives of the research? How many had approval from local leaders or governments? How many of those research projects carried medical personnel to the field and why?
We do not learn much on research practices and informed consent during the 1960s from Trudy Turner's survey and we can not convincingly conclude that what Neel and Chagnon did was what everybody else was doing at the time. But assuming that it was, does this make it right? Can we give rest to this issue by saying that Neel's and Chagnon's procedure were common practice? The authors of section 2.2 say yes, Janet Chernela in Section 2.9 says no. In fact, we can accept the conclusion of section 2.2 if and only if we totally dismiss what several Yanomami spokespeople have been saying: that Chagnon and other team members said that the blood was going to be used to "see" and treat diseases affecting the Yanomami. This constitutes a promise of clinical results and assistance that seems never to have been part of their research goals. Now that many Yanomami know what the blood and other samples were for, they feel cheated.
Statements and interviews with Yanomami leaders in which they reflect on the collection of samples have been presented in the round-table discussion organized by Public Anthropology (see http://www.public anthropology.org ), in which task force member Raymond Hames participated, and they are also present in Chernela's discussion of the issue on Section 2.9. This is the major difference between the two sections. The fact that Chernela takes seriously what Yanomami leaders are saying about the issue leads her to reach a different conclusion from the authors of Section 2.2. Chernela writes, "the possibility remains that these promises were never intended but served as instruments in motivating participation. If the Yanomami were made promises without any intent of fulfillment, this constitutes an attempt to persuade, in order to obtain samples, under false pretenses. It is a breach of ethics." (Section 2.9, page 7). I could not agree more with her.
Chernela also calls attention to interesting information provided in Section 2.2: the confirmation from Chagnon and linguist Ernesto Migliazza that the explanation given to the Yanomami previously and during the blood drive expeditions revolved around the search for "diseases that were 'inside,' 'in the blood'." Moreover, Migliazza explains that the Yanomami were used to having their blood taken for malaria treatment but that they were "amused and surprised that Neel expedition also collected nasal mucus, sputum, urine, and feces samples" (Section 2.2, page 4). This observation by Migliazza supports what the Yanomami have been saying: that there was an explicit association between the research sampling and the already well known treatment of malaria, and that nothing was ever said to them to the contrary. This is a key point because I think that hardly anyone would agree that deliberately deceiving research subjects was acceptable, even by 1960s standards.
In the light of Chagnon's and Miggliazza's statements, the authors of sections 2.2 highlight that Neel's decision to vaccinate the Yanomami against measles in 1968 was due to previous research and that Neel kept sending vaccines and medicine to missionaries who worked with the Yanomami until 1970. I think it is legitimate to ask (especially the Yanomami people) if the assistance given corresponded to what the Yanomami thought the samples would provide in terms of treatment and if the mentioned vaccines and medicine can be accepted as a fair compensation for the decades of research that the Yanomami have been submitted to and the value and amount of samples they have provided. Once more we need to take in consideration that human samples were collected over two decades among the Yanomami and that many of those samples are still being studied today. Moreover, it has been pointed out extensively in this debate that the Yanomami in Venezuela have faced several epidemics in these past decades and that they have had poor health assistance. They thus sorely needed the health assistance that the researchers implied they would receive. As Chernela suggests, this dire need could have been instrumental in their acquiescence.
Section 2.2 left me wondering if Trudy Turner and the authors do not consider that ignoring or dismissing the memory and perspectives of Yanomami people on the issue is in itself unethical.
I would like to register my surprise at not finding a section or at least a hint of investigation in this preliminary report into the allegations of Napoleon Chagnon's partnership with Charles Brewer, a controversial figure and well known gold prospector in Venezuela, and Cecilia Matos, the mistress of former Venezuelan president Carlos Pérez who was involved in scandalous cases of governmental corruption. Chagnon participated actively in the project to create of a biosphere reserve inside the Yanomami territory that would have given him and Brewer "a scientific monopoly over an area the size of Connecticut" ( Darkness in El Dorado , p. 188). The project was never approved, but in the late 1980s and 1990s Chagnon participated and organized several expeditions to the Yanomami territory together with FUNDAFACI, a foundation created by Matos to "help" indigenous and peasant families. Those trips had several objectives: collect blood samples, plants, animals, etc., and take journalists and film crews to the most remote Yanomami region, the Siapa valley, trips which carried a high risk of spreading diseases to the Yanomami. There are serious accusations in the book that these trips caused severe disturbance to the Yanomami communities and that Chagnon's, Brewer's and Matos' projects jeopardized Yanomami rights and welfare. Those accusations can not be left untouched by the Task Force, and I hope they will become the object of a case study in the final report.