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Internet Source: Chronicle of Higher Education, October 6, 2000, The Chronicle Review, B24
Source URL: http://chronicle.com/free/v47/i06/06b02401.htm


From the issue dated October 6, 2000

POINT OF VIEW

How Anthropology Should Respond to an Ethical Crisis

By CAROLYN FLUEHR-LOBBAN

Ethics in anthropology is like race in America -- dialogue takes place during times of crisis. In 1971, the Vietnam War precipitated American anthropology's first statement on ethics, and ethical discourse has been punctuated by crises from within and without ever since.

The anticipated publication of Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon (W.W. Norton), by the investigative journalist Patrick Tierney, may produce a crisis of unparalleled magnitude in anthropology. Tierney's book alleges not only egregious violations of ethical conduct by anthropologists, but also a cynical betrayal of the fundamental human rights of the Yanomami, an isolated, indigenous people of Venezuela and Brazil. The book suggests that genetic research sponsored by the Atomic Energy Commission and led by the late James V. Neel, of the University of Michigan, contributed to untold deaths among the Yanomami.

Tierney's investigation relates that in 1968, thousands of samples of Yanomami blood and other biological data were collected for research. At the same time, a measles vaccine known to be virulent in genetically isolated populations was injected into the Yanomami as part of a project designed by Neel, allegedly inspired by eugenics theories. The essential social and genealogical data for the experiment were provided by Napoleon A. Chagnon, author of The Yanomamö: A Fierce People, who had worked with the Yanomami since 1964. (Chagnon, now retired from the University of California at Santa Barbara, strongly disputes the interpretations of the book that have surfaced even before its publication.)

The story Tierney tells grows more sinister, as an epidemic rapidly ensued and the research team allegedly was advised not to provide any medical assistance to the sick and dying Yanomami. The similarity to the infamous Tuskegee experiment, conducted from 1932 to 1972, when latent syphilis was left untreated in 399 low-income African-American sharecroppers to observe the course of the disease, comes to mind.

The reverberations of Tierney's book may reach well beyond anthropology to all genetic and biomedical research among vulnerable, non-Western populations. But its most immediate effect may be to provoke a needed dialogue on the crucial importance of informed consent in anthropology. Although "informed consent" was articulated as a legal and ethical principle for medical research in 1972, many years passed before it was adopted by social scientists -- largely because it was perceived to be the standard for biomedical research and not for social research.

Also, due to a perceived association in the minds of many anthropologists and other behavioral scientists between informed consent and consent forms, the consent principle did not appear in any statement on ethics from the American Anthropological Association until 1998, when its ethics code was revised to apply to each of anthropology's four fields.

In a 1994 article in Human Organization, the journal of the Society for Applied Anthropology, I argued that anthropologists are not exempt from informed consent. Informed consent is not about forms; it is an opportunity to have an open discussion with participants about the research. The scientist describes and discloses to the people studied, to the best of his or her knowledge, the intent of the research; the methods by which it is to be carried out; the source of financial support; and the possible outcomes of the research. The documentation of informed consent may be recorded orally or in writing, using the language of the people studied as well as that of the researcher.

Those standards are not commonly followed today in anthropological or cross-cultural research, but they should be. Some scientists might argue that informed consent is a specialized Western ethical and cultural principle from which research outside the United States or the West is exempt. Others might say that the Yanomami are a "primitive" people incapable of giving consent because they are an isolated group of simple horticulturalists who could not understand the scientific purpose of genetic or social research or its ramifications.

But few would argue that there is a human being or culture anywhere on earth that does not understand the difference between disease and health, life and death, or cultural survival and cultural extinction. An inability to obtain informed consent may mean that research cannot or should not take place. It is the great burden of anthropologists on research projects like the ones now under scrutiny to be the main linguistic and cultural brokers between the powerful Western world and its scientists and the non-Western, less powerful people they study.

Like all research with humans, anthropological studies are now subject to formal institutional review. Unlike other fields, it is increasingly subject to approval by review boards among the peoples studied, such as those of American Indian tribes that have grown more restrictive and selective since federal regulation was enacted to protect human subjects. I have heard complaints from leaders of universities' institutional review boards about the resistance of some anthropologists to their oversight, claiming that reviewers from other disciplines do not understand the nature of anthropological research and that informed consent in other cultures is impossible to obtain.

Some have revealed a certain degree of paternalism (or maternalism), indicating that they know what is best for the people they study. This has been criticized as the "My Tribe" syndrome in anthropological circles. How much Chagnon's research was subject to institutional review after 1972 is not known; however, his returns or attempted returns to the field have often been met with controversy. In two cases, protests or a government ruling prevented him from returning. In the 1990's, professional associations of anthropologists in both Brazil and Venezuela condemned Chagnon's work, demanding that he not be allowed to return for further research.

For this article, I reviewed Chagnon's 1974 film A Man Called "Bee," a documentary filmed among the Yanomami of Venezuela about how to conduct anthropological fieldwork. While viewing the 40-minute film, I was unable to find any reference to ethics and the conduct of research even though the first anthropological ethics statement had been in effect for three years.

Informed consent, of course, is not just an issue for anthropologists. Lack of openness and full disclosure have been lacking in studies among vulnerable populations in the United States, particularly in research on the effects of radiation using severely retarded people who may be incapable of giving consent. Ethical questions have also been raised about AIDS-related research among a number of disadvantaged populations, such as H.I.V.-infected people in Haiti, Thailand, Uganda, and other poor nations, where the high cost of AIDS treatment and prevention makes loosely regulated or nonmonitored studies more attractive to Western researchers.

Allegations of misconduct by one or a small group of anthropologists should not tarnish the entire profession, especially when many anthropologists have adapted to a changed, postcolonial world. Today, "agency" and self-determination are expected among the formerly colonized peoples. Now that non-literate people are literate, they can critically read the publications of foreign researchers.

The Yanomami, in fact, have their own representatives, including Davi Kopenawa, the respected Portuguese-speaking shaman. Anthropologists sensitive to this postcolonial context have collaborated more with research participants and involved them in every phase of research from planning to publication. That change may be reflected in the increasing use of terms such as "research participants" or "collaborators" instead of "research subjects."

Anthropologists at the November meeting of the American Anthropological Association may demand some sanction against Chagnon. Censure may be raised as a "remedy," but that would be a quick and easy solution. The only time I am aware that anthropologists censured a colleague was in a case many regret.

Franz Boas, a founder of American anthropology, was censured in 1919 by the powerful Anthropology Society of Washington for his criticism of four anthropologists, who combined intelligence gathering for the U.S. government with their research during World War I. Later, during the Vietnam War, anthropologists were alleged to be aiding the Department of Defense in gathering intelligence about Southeast Asia. Those charges led the association, in 1971, to draft its first principles of professional responsibility.

The present crisis is an opportunity to advance critical ethical discourse in anthropology. Passing resolutions to condemn unethical behavior is no substitute for sustained, vigorous dialogue and debate about ethics. We need to undertake a painful examination of a past anthropology that ignored or was uncritical of research driven by racism and the arrogance of Western power and privilege. We must also not forget the Yanomami. Any discussion raised by this case must consider their fundamental human rights.

We need to understand the spirit and intent of informed consent, as well as its legal demands. Ethics, methods, and research outcomes are inseparable. Ultimately, we might comprehend a basic truth: Bad ethics makes bad research.

Carolyn Fluehr-Lobban is a professor of anthropology and director of general education at Rhode Island College. She edited Ethics and the Profession of Anthropology: Dialogue for a New Era (University of Pennsylvania Press, 1991) and was a member of the American Anthropological Association commission that drafted its revised Code of Ethics in 1998.

Section: The Chronicle Review

Page: B24