Internet Source: Public Comments on Research Ethics and the Yanomami
Source URL: http://www.gettysburg.edu/~choward/yanomami-response/sponsel-5.html
Dr. Leslie Sponsel, Professor
University of Hawai`i
Commentary on W.P. 2.1: The Measles Epidemic of 1968
Hippocrates (460-377 B.C.) is generally recognized as the founder of Western medicine including its professional ethics. The Hippocratic Oath has been followed by Western medical practitioners through the centuries to this day. It is still used during the graduation ceremonies for medical students at many universities and schools. The pivotal point in this oath is not only to avoid doing any harm, but also to do good--- the physician's responsibility to try to heal the sick and injured.
This pivotal point of the Hippocratic Oath is reflected in subsequent statements on professional ethics in medical and scientific research including the International War Crimes Tribunal Nuremberg Code of 1946, the World Medical Association Declaration of Helsinki of 1964, and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research Belmont Report of 1979, among many others (e.g., Annas and Grodin 1992, Lifton 1986, Moore 1996). For example, the Belmont Report (Ryan 1979:4) includes beneficence as the third of its three basic principles: "Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being." In other words, for more than 2,000 years since Hippocrates, Western medical ethics, and subsequent research ethics, have involved both avoiding harm and doing good (e.g., Dooley 2001). Also these principles are reflected in various international conventions on human rights of the United Nations (e.g., Mann, et al., 1999).
The Declaration of Helsinki includes the following articles of particular relevance to the 1968 measles epidemic:
2. "It is the duty of the physician to promote and safeguard the health of the people."
8. "Medical research is subject to ethical standards that promote respect for all human beings. Some research populations are vulnerable and need special protection. The particular needs of the economically and medically disadvantaged must be recognized."
10. "It is the duty of the physician in medical research to protect the life, health, privacy, and dignity of the human subject."
19. "Medical research is only justified if there is a reasonable likelihood that the populations in which the research is carried out stand to benefit from the results of the research."
Note that the Declaration of Helsinki was initially announced in 1964, whereas the measles epidemic of the Yanomami occurred several years later in 1968.
In the case of the measles epidemic among the Yanomami, the scientific research team included Dr. James Neel, Dr. Willard Centerwall, and Dr. Bill Oliver. All three of these individuals were medical doctors, not simply graduate students or Ph.D.'s in anthropology alone (c.f. Chernela and Ehrenreich 1996). About a month before the scientific research team entered their first village in the Venezuelan Amazon, Dr. Neel was informed by a missionary from Venezuela that a measles epidemic was spreading among the Yanomami, as Trudy Turner and other members of the Task Force acknowledge. As medical doctors, Dr. Neel, Dr. Centerwall, and Dr. Oliver had the knowledge and the ability to treat sick and dying Yanomami. Certainly they did so. Certainly they saved many lives. As far as I know no one denies that. However, several other things are uncertain: Was the number of lives saved in the dozens, hundreds, or thousands? How many Yanomami died from the adverse reactions and complications of the measles vaccination, especially without follow up medical care? How many more Yanomami lives might have been saved if the research team which included three medical doctors would have devoted full time and attention to treating sick and dying human beings?
It has been known for centuries just how vulnerable some indigenous populations are to Western diseases (e.g., Bodley 1999, Hurtado, et al., 2001a). For example, what is merely a simple cold for others can become a serious illness for any Yanomami. Dr. Neel had an upper respiratory infection when he entered the field, he knew very well about the risk to indigenous people, but then he was already two weeks behind schedule, what else could he do? You don't have to be a medical doctor to know the risk, you just have to be acquainted with the literature on cultural contact and resulting disease and epidemics in previously isolated indigenous populations. Nevertheless, the Task Force writes that it will consult with members of the medical profession about the health risk to which Dr. Neel personally exposed the Yanomami. Have they done so? If so, what have they found? Will the answer be in the final report of the Task Force? (See Turner 2001:16-17).
At Dr. Neel's insistence, the whole team also continued scientific research as originally planned by him. This is documented in his own words in his field notes archived at the American Philosophical Society. (Also see Neel 1994, Stevens 2001, and Turner 2001). Accordingly, the logical question arises inescapably: How many more Yanomami lives might have been saved if Dr. Neel and his team with two other medical doctors had temporarily suspended research and instead given top priority to devoting time and attention entirely to treating sick and dying Yanomami in a health crisis?
Consider article 10 of the Nuremberg Code of 1946: "During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skills and careful judgement required of him that continuation of the experiment is likely to result in injury, disability, or death to the experimental subject." In the opinion of some scientists and ethicists, the word experiment might well be broadened to encompass research. If so, then would it apply to the particular case under consideration here--- the actions and inactions of a research team with three medical doctors during the 1968 measles epidemic among the Yanomami? In other words, should the research have been terminated and instead top priority be given to devoting time and attention entirely to treating sick and dying Yanomami in a health crisis? Furthermore, one can not help but wonder what the U.S. government and American public who are tax payers would think of federally funded research that continued in the midst of a health crisis and sacrificed time from medical treatment? Would this be allowed to happen in the U.S.A.? Are the Yanomami any less human? Have some characterizations of the Yanomami dehumanized them? Can't dehumanizing characterizations lead to dehumanizing treatment? (See Landes, et al., 1976, Sponsel 1973, 1998:101-105, 113-114, Sluka 2000, Staub 1989:58-62). Is the behavior of researchers toward the Yanomami during the measles epidemic of 1968 a subject for investigation by the U.S. Office of Research Integrity and/or some other organizations? (See their web site below, also Castro Lobo 2001, Sponsel 1998:114-116, and Wax and Cassell 1979). It is important to realize that it is clear through Dr. Neel’s own publications and papers that he was not simply engaged in a humanitarian action in vaccinating some Yanomami for measles, this was an integral part of his research as well (Stevens 2001, Turner 2002a,b).
Professional ethics is not a matter of what is convenient for the researcher, merely to be followed or suspended as one likes. The Yanomami did not have the power to terminate or suspend the epidemic for the convenience of the researchers. However, Dr. Neel, as leader of the research team, had the power to terminate the research, or at least suspend it temporarily, and instead give top priority to devoting time and attention entirely to medical treatment of sick and dying Yanomami during a health crisis. Also granting agencies and other institutions recognize that changes in research projects and schedules are sometimes necessary because of practical circumstances and logistics. Wouldn't most agencies, institutions, and individuals have recognized the urgency and gravity of a measles epidemic for the Yanomami, and the ethical responsibility of anyone on site with any medical expertise? Well, at least Dr. Neel, Dr. Centerwall, and Chagnon (1970) recognized the value of the data they recorded on the epidemic and were able to get publications out of it. This was a unique opportunity for researchers to observe an epidemic in a virgin soil population and they took advantage of it. They were also able to make a film about doing research, in spite of the inconvenience of the epidemic ("Yanomama: A Multidisciplinary Study"). (See Dickens 2000, and Turner 2001:17-21).
Professional ethics is not only a matter of wrong caused by action, it is also a matter of wrong caused by inaction. Time spent on research was time sacrificed from treatment of sick and dying Yanomami in a health crisis. How many more Yanomami lives might have been saved if Dr. Neel, Dr. Centerwall, Dr. Oliver, and the rest of the team had temporarily suspended research in favor of giving top priority to devoting time and attention entirely to treating sick and dying Yanomami during a health crisis? But science appears to have been more important, or should we say scientism? (See Stenmark 1997). As Trudy Turner and other members of the Task Force acknowledge in their Preliminary Report, this, in Dr. Neel's own words was "a gesture of altruism and conscience." Indeed, it does appear to be merely a gesture, and in the midst of the health crisis of a spreading measles epidemic in which Yanomami were sick and dying. Is this really a demonstration of humanitarian concern by Dr. Neel and Chagnon? Likewise, in sharp contrast to the numerous projects in applied and advocacy anthropology on behalf of the Yanomami and their other concerns conducted by anthropologists working in Brazil for three decades, did Dr. Neel, Chagnon, and their collaborators ever develop any similar projects? If no, is this really a demonstration of humanitarian concern? Will Chagnon ever provide information on his Yanomami Survival Fund? John Peters (1998) donates all royalties from his book to a health fund for indigenous communities. Has Chagnon shared any of his royalties with Yanomami in any way?
There is yet another potential problem of professional ethics regarding the 1968 measles epidemic among the Yanomami. Dr. Bernard Centerwall, M.D., indicates that his father, Dr. Willard Centerwall, was deeply disturbed and strongly protested about the ethics and morality of Dr. Neel's insistence on pursuing research in spite of the medical emergency presented by the Yanomami health crisis (e.g., Tierney 2002:398, note 26). Moreover, recently Dr. Bernard Centerwall stated:
“Neel explained to him [Willard Centerall] at that point that actually his intention was not to vaccinate the village at all, because this would be a unique opportunity, not to be repeated, of seeing what an actual measles outbreak in a virgin soil population with no vaccinations at all, and that the principal was that they were there as merely observers. That they were there to observe the natural process and that they were not [to] interfere with the culture and that a measles epidemic was a natural process” (Frechione 2002:2).
Kenneth Good (2002:2) recalls a conversation with Chagnon in which he said: “If Neel gives me any crap I have something on him. There was a measles epidemic and he didn’t want to stop it.” Chagnon (2002) replied: “Kenneth Good is a liar. I made no such comment to him regarding James V. Neel’s reluctance to intervene in the 1968 measles epidemic.” Obviously someone is lying. Is it Bernard Centerwall and Kenneth Good, or Chagnon? In the matter of the alleged reluctance of Dr. Neel, is this intentional inaction or negligence by a medical doctor in the midst of a health crisis? Is this contrary to the Hippocratic Oath, Nuremberg Code, Declaration of Helsikini, and similar standards of medical ethics? Is this the extrinsic value of the Yanomami as research data being allowed to supercede their intrinsic value as human beings? Is this scientism instead of science? Is this a humanitarian in action? (See Dickens 2000).
Dr. Neel's inclination to give research priority over humanitarian efforts is understandable however questionable morally and ethically, because it fits the pattern. Dr. Neel was primarily a scientific researcher engaged in genetic studies related to biomedical questions who also happened to have the advantage of an M.D. degree. In his previous work with survivors of the U.S. atomic bombing of Hiroshima and Nagasaki in Japan, and also his work with the survivors of the U.S. atomic bomb experiments in the Marshall Islands where human beings were intentionally irradiated as experimental animals, Neel's job was to conduct scientific research and not to provide medical care (Johnston 2002:9). [At a minimum the atomic bombing of Hiroshima killed 66,000 human beings and injured 69,000, while in Nagasaki the tolls are 39,000 killed and 25,000 injured (Avalon Project 2002, also see Christopher 1999:94-95)]. I agree with Magdalena Hurtado and her collaborators (2001b) when they call for more guidelines for ethical research, and in that respect, surely they must agree with Patrick Tierney as well. Is it time for a thorough investigation of the paper trail left behind at the home universities and granting agencies involved in the scientific research on the Yanomami conducted by Dr. Neel, Chagnon, and their collaborators? (See Wax and Cassell 1979).
Finally, one commentator, Thomas Gregor (2002:2) asked if any of the critics of Dr. Neel and Chagnon have saved Yanomami lives? The answer is yes. Anthropologists working in Brazil with the Yanomami have long battled heroically to save lives, often at the risk of their own, by not only developing emergency and other health care projects through the Pro-Yanomami Commission, but through the same organization battling to establish a contiguous protected area for the Yanomami to combat the invasion of wildcat gold miners and other threats to their lives (see Albert and Gomez 1997, Peters 1998, Ramos and Taylor 1979, Ramos 1995, Turner 1991a,b). These anthropologists and others did this in spite of the reckless indirect and direct attacks on them and the Yanomami by Chagnon, another allegation by Tierney and others which the Task Force has yet to adequately address. (See my General Comments on the Preliminary Report and citations therein). If these anthropologists had been working in Venezuela instead of Brazil when health emergencies and other crises arose among the Yanomami, then no doubt they would have had the professional ethics and personal morality to take appropriate action. They have not pursued egotism, careerism, scientism, and evolutionism to such an extreme as to be not only abnormal, but pathological and infectious. (Also see Chiappino and Ales 1997, Colchester 1984).
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