Dr. Kenneth Good
New Jersey City University
Commentary on W.P. 2.2, Informed consent and the 1968 Neel expedition
This section is a good example of an important issue that would not have been discussed had not Tierney raised it in his investigation of the biomedical studies performed on the Yanomami of Venezuela and Brazil by Neel and Chagnon. It is also one of numerous charges documented by Tierney which have been ignored and shunted aside by the storm over the measles epidemic.
The researchers in this section have stated that the explanations of the purpose of the research (taking vials of blood, nasal mucus, sputum, urine and feces samples) used by the Neel expedition would not measure up to today’s standards, but that by 1968 standards they “were appropriate and even advanced.”
I don’t believe there are any dates or periods when honesty is more or less “appropriate”. Informed consent is the only ethical procedure at any time. If blood is to be drawn from people including their children they have to be told why, regardless of the year. I assisted Venezuelan malaria and onchocerciasis (river blindness) medical teams in taking blood samples, skin biopsies, and fecal samples of Yanomami of the Hasupuweteri region in 1975-76 (not so distant from 1968). I told them exactly the purpose and that they would be treated if found to harbor parasites that cause these diseases. And I subsequently explained the nature of the treatment. There was no difficulty in this and all volunteered. In those villages where I did not live I always gave gifts because I was well received and offered food. It was not my policy to accustom the Yanomami to getting paid for medical treatment. Again I did not find this arrangement difficult.
The Yanomami sampled by the Neel/Chagnon team were deceived. Chagnon, of course, by participating in this Atomic Energy Commission project was in the unenviable position of having to get families lined up, photographed, marked with numbers and then give body samples, all the time coveting the shiny new metal goods that he laid before them. Their blood was not taken to cure them. It was taken for an experimental study and they were the control group. That Migliassa (who accompanied this team) states that they were used to having blood taken (drops, not vials) by malaria paramedical personnel is irrelevant. The Yanomami received no medical benefit from the Neel/Chagnon blood collection. It seems that the attitude was if payments of pots, machetes, fishhooks are made what do they need to know. Their blood was bartered, and they were treated much below their deserved dignity and level of intelligence. But then, again, the enormity of the project did not allow for that.
That was 1968 and subsequent years. What about now? Many of the Yanomami who extended their arms to have vials of blood drawn were children then and are now grown up. Many others are now dead. Those still here, of course, have lived to realize that there was no medical benefit from their bizarre experience. One of the most strident outcries is that Tierney’s revelations related to the vaccinations and body samples will impede future medical aid to the Yanomami, thus ultimately doing them a great disservice. This very well may be true because now that many Yanomami have come to realize the deception of the Neel/Chagnon team they will be very reluctant to offering body samples to medical teams that have the sole objective of treating and preventing killer diseases among them. Thus, it is this experimental procedure on a people, who although intelligent, were duped into believing it might save some of their babies, which is the ultimate disservice.
Some might feel that this happened many years ago, let’s move on. Well it turns out that the Yanomami have learned that it isn’t over. Thousands of vials of blood that were taken from them and their now deceased relatives still exist frozen in laboratories around the U.S. I recently spoke with three representatives settlement regions from Venezuela and Brazil. They are angered and disgusted, and want this blood returned to them for proper disposal. I doubt that they will be silenced until that happens.