Culture and consent

Blood samples collected in the 1960s from the last major isolated tribe in the Americas caused a commotion at the annual meeting of the American Anthropological Association (AAA) in New Orleans. At a session on November 22, Yanomami spokesman Peri Porapitheri raised the issue and asked members of the US anthropologists' organization to fund and attend a future meeting in Brazil to discuss the fate of the controversial samples.The Yanomami have previously demanded the return of the samples, which are still being used by scientists for genetic research. In particular, tribal representatives have expressed concern over samples that constitute the physical remains of people who are now dead, Porapitheri told The Chronicle of Higher Education. Whether the donors are still living or not, the matter of using human tissue samples collected from indigenous people extends beyond the Yanomami —members of British Columbia's Nuu-chah-nulth tribe are also seeking return of blood samples collected during the 1980s — and goes straight to the heart of the concept of informed consent, past and present. The contentious Yanomami samples were acquired in 1968, but objection to their use in research didn't arise until 2000, when journalist Patrick Tierney published a book, Darkness in El Dorado, accusing geneticist James Neel of various misdeeds. "The major accusation against Neel was that he seeded measles intentionally as an experiment in sociobiology. This was completely cleared up by his field notes," said Ken Weiss, who did postdoctoral research with Neel."There was no malicious intent," explained Weiss, now professor of anthropology and genetics at Pennsylvania State University. "Benign genetic research is being filtered 30 years later by people angry because of what happened to them in the outside world. Powerful westerners showed up, collected blood, and disappeared," he told The Scientist.About 20,000 Yanomami, whose name means "human being," currently live in hundreds of small villages in southern Venezuela and northern Brazil, where their ancestors have hunted and farmed for three millennia. In the 1960s, Neel collected the samples to study population structure and effects of exposure to viruses and radiation. But the project detoured when a measles epidemic intervened. The blood samples provided evidence that the population had never been exposed to the virus, and led to distribution of vaccine.In the 1960s, obtaining tissue samples for biomedical research was more swap meet than clinical procedure. The Yanomami traded their blood for guns and pots, machetes and food. "What exactly Neel told his subjects is unclear, but we can be absolutely certain that it bore almost no resemblance to contemporary notions of informed consent. Neel took the position that people he studied should be happy to contribute to science, and that science in the end would benefit them, though the precise means by which this would occur was sometimes unclear," said M. Susan Lindee, associate professor of history and sociology of science at the University of Pennsylvania. Certainly no one predicted that the crude electrophoresis used to study serum protein variants in the 1970s would evolve into today's genome screens, which sometimes use Yanomami DNA along with samples from many other of the world's thousands of human populations.The Yanomami blood samples ended up frozen at Neel's home base, the University of Michigan. When the university no longer wanted to maintain them, Neel, who died in 2000, left them to Weiss. "The samples lay idle for 20 years, the white cells thrown away," Weiss recalled. So he amplified the scant DNA left behind, and began sending out samples to researchers. Today, the Yanomami DNA cannot be ordered from the American Type Culture Collection, but it can be obtained from Weiss, the University of Michigan, the National Cancer Institute, or the University of California, Irvine. Weiss said he is willing to return his existing samples and has already halted publication of ongoing work in his lab that uses them.Just a few days after the AAA meeting, UNESCO's International Bioethics Committee met in Montreal, Canada to discuss a draft convention establishing international guidelines for "collecting, processing, using and storing genetic data." A final version of the document — which would be a standard-setting instrument similar to the 1997 Universal Declaration on the Human Genome and Human Rights — is "urgently needed," according to UNESCO, to cover a broad range of situations involving human tissues and the data derived from them.

Culture and consent

Human tissues collected by anthropologists provoke increasing controversy.

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