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In the Amazon, Giving Blood but Getting Nothing

by Larry RohterNew York Times
June 21st, 2007

Joaquina & Rogerio Karitiana

KYOWÃ, Brazil - As the Karitiana Indians remember it, the first researchers to draw their blood came here in the late 1970s, shortly after the Amazon tribe began sustained contact with the outside world. In 1996, another team visited, promising medicine if the Karitiana would just give more blood, so they dutifully lined up again.

But that promise was never fulfilled, and since then the world has expanded again for the Karitiana through the arrival of the Internet. Now they have been enraged by a simple discovery: their blood and DNA collected during that first visit are being sold by an American concern to scientists around the world for $85 a sample.

They want the practice stopped, and are demanding compensation for what they describe as the violation of their personal integrity.

"We were duped, lied to and exploited," Renato Karitiana, the leader of the tribal association, said in an interview here on the tribe's reservation in the western Amazon, where 313 Karitiana eke out a living by farming, fishing and hunting. "Those contacts have been very injurious to us, and have spoiled our attitude toward medicine and science."

Two other Brazilian tribal peoples complain of similar experiences and say they are also seeking to stop the distribution of their blood and DNA by Coriell Cell Repositories, a nonprofit group based in Camden, N. J. They are the Suruí people, whose homeland is just south of here, and the Yanomami, who live on the Brazil-Venezuela border.

Coriell stores human genetic material and makes it available for research. It says the samples were obtained legally through a researcher and approved by the National Institutes of Health.

"We are not trying to profit from or steal from Brazilians," Joseph Mintzer, executive vice president of the center, said in a telephone interview. "We have an obligation to respect their civilization, culture and people, which is why we carefully control the distribution of these cell lines."

Like a similar center in France that has also obtained blood and DNA samples of the Karitiana and other Amazon tribes, Coriell says it provides specimens only to scientists who agree not to commercialize the results of their research or to transfer the material to third parties.

The indigenous peoples of the Amazon are ideal for certain types of genetic research because they are isolated and extremely close-knit populations, allowing geneticists to construct a more thorough pedigree and to track the transmission of illnesses down generations.

The practice of collecting blood samples from Amazon Indians, though, has aroused widespread suspicions among Brazilians, who have been zealous about what they call "bio-piracy" ever since rubber seedlings were exported from the Amazon nearly a century ago. The rise of genome mapping in recent years has only exacerbated such fears.

Debora Diniz, a Brazilian anthropologist, argues that the experience of the Karitiana and other tribes shows "how scientists still are ill prepared for intercultural dialogue and how science behaves in an authoritarian fashion with vulnerable populations."

The core of the international debate that has emerged here, though, has to do with the concept of "informed consent." Scientists argue that all the appropriate protocols were followed, but the Indians say they were deceived into allowing their blood to be drawn.

"This is sort of a balancing act," said Judith Greenberg, director of genetics and developmental biology at the National Institute of General Medical Sciences, part of the National Institutes of Health. "We don't want to do something that makes a whole tribe or people unhappy or angry. On the other hand, the scientific community is using these samples, which were accepted and maintained under perfectly legitimate procedures, for the benefit of mankind," she said.

The Indians themselves, however, respond that at the time the first blood samples were drawn, they had little or no understanding of the outside world, let alone the workings of Western medicine and modern capitalist economics.

Francis Black, the first researcher to take blood samples here, died recently, so it is impossible to obtain his account. But officials of the National Indian Foundation, or Funai, the Brazilian government agency that supervises tribal groups, said that his presence on the reservation here violated procedures specifically aimed at protecting Indians from outsiders.

"We would never have authorized such a thing," Osmar Ribeiro Brasil, who has worked at the agency's regional headquarters in Porto Velho since the 1970s, said of the blood collection. "There is no record of any research permission request either here or at our headquarters in Brasília."

For the reporting of this article, all the required procedures were followed. Funai authorized the visit here and sent an official to accompany a reporter and a photographer. But that official did not sit in on the interviews here or coach the Indians in their responses.

In the case of the 1996 expedition, permission to enter the reservation was obtained, but only to film a nature documentary, Funai officials said. Once on the reservation, however, a Brazilian doctor accompanying the film crew, Hilton Pereira da Silva, and his wife began conducting unauthorized medical research, Funai officials and residents of the reservation said.

"If anyone is ill, we will send medicine, lots of medicine," is what Joaquina Karitiana, 56, remembers being told, which soothed her worries. "They drew blood from almost everyone, including the children. But once they had what they wanted, we never received any medicine at all."

Dr. Pereira da Silva was not available for comment. But in a statement that he issued in response to complaints about his work, he said he had explained the purposes of his research "in accessible language" and had promised that "any possible benefit of any type that results from research with this material will revert in its entirety to those who donated."

As a result of the legal pressures that the tribe and Funai have brought, Brazilian institutions that had collected blood samples have returned them to the tribes. But entities abroad have resisted, saying both that they acted properly and that there are no profits to be shared with the Indians.

"They want money, and we have not made any money," Mr. Mintzer of Coriell said. "I don't know of anyone who has made any money from this."

The Karitiana say that includes them. Antonio Karitiana, the village chief, said that health care, sanitation and housing were precarious, and that transportation was deficient. Any money obtained from Coriell or a lawsuit would be invested "for the benefit of the entire community," he said.

"We don't want that blood back, because it is contaminated now," said Orlando Karitiana, 34, a tribal leader. "But these blood samples are valuable in your technology, and we think that every family that was tricked into giving blood should benefit."

The religions of some other tribal groups, however, regard human tissue as important or nearly sacred. The Yanomami, for example, say they want the blood samples returned to them intact.

"A soul can only be at rest after the entire body is cremated," said Davi Yanomami, a leader of the group. "To have the blood of a dead person preserved and separated from the remainder of the body is simply unacceptable to us."

But Francisco M. Salzano, one of Brazil's leading geneticists, with more than 40 years of experience in the Amazon and dealing with indigenous peoples, argues that it is acceptable to brush aside such concerns.

"If it depended on religion and belief, we would still be in the Stone Age," he said in a telephone interview from his office at the Federal University of Rio Grande do Sul.

"None of these samples have been used in an unethical manner," Dr. Salzano added. As for the question of informed consent, he added, "That is always relative."

Update: Prof. da Silva sent the following response to this article:

Ethical Humanitarian Medical Work, Not Bio-piracy

On June 20th, 2007 the NYT published an article where my name appears linked to a case of bio-piracy, however, as is the press’s obligation in order to be impartial, I have never been contacted by the journalist. The news deal with the sale of “blood and DNA” of Brazilian Indians by the US company Coriell Cell Repositories (“In the Amazon, Giving Blood but Getting Nothing”, by Larry Rohter). For this reason it is necessary to clarify that I have nothing whatsoever to do with such issue.

In August of 1996 I worked as the anthropologist consultant in a documentary film for the Discovery Channel about the Mapinguari, one of the legendary creatures that are supposed to live in the Karitiana Indian territory in the State of Rondônia, Brazilian Amazon. Since I am also a trained physician, with a Master’s degree in Public Health and several years of work experience among rural Amazonian populations, upon arrival at the Karitiana village I perceived that their health situation was extremely precarious and, even though their health post received medications from the documentary team, several people in the village were at risk of dying of dysentery, dehydration, malaria, tuberculosis, flu etc. In a conversation during filming the Headman of the tribe asked, in the name of their Indian Association, if I could stay a little longer after filming and help them with emergency medical care as, according to him and the tribe’s health agents, several months had passed since they were last visited by a physician from the Brazilian Indian Service (FUNAI). After the end of filming, and after the okay of the local FUNAI officer, whence with full agreement of all involved, I stayed for three more days during which I attended, as a physician, at the tribe’s health post, and also at the huts of those who could not go to the post. Overall I attended emergentially and for humanitarian reasons only, everyone who requested my professional medical assistance. In order to try to help improve the diagnosis of some illnesses such as malaria, hepatitis, tuberculosis, viral diseases, anemia and others for which I could not provide a diagnosis based on clinical evidence alone, some blood samples were drawn and taken to be analyzed at the Instituto Evandro Chagas/FNS, in Belém, Pará. Being a physician with some years of experience in the Amazon, I always carry a medical kit with me for potential emergencies, this was the material I used to conduct the exams and collect the samples. Samples were only taken of the people I considered more severely ill or that I could not make a final clinical diagnosis. Since I did not have adequate storage equipment in the field (as I did not intend originally to provide medical care for that population as I was only hired to work in the documentary), the blood coagulated and, I was told at FNS, that it was no longer suitable for biochemical analysis. In order to try to recover any useful information from the samples, I took the material to the Federal University of Pará, where I deposited all the vials collected. I asked colleagues in the department of genetics, as a personal favor, that when possible they tried to see what kinds of diseases they could identify from the samples so we could report them to FUNAI and the Karitiana. As the news about the Coriell Repositories came out in the press, in 1997, the material was never touched by me or anyone at the University, and the vials were delivered to the Ministry of Justice of Rondônia upon their request. All the blood vials collected during my emergency medical work for the Karitiana went to the University, they never left Brazil, and they never had any commercial purpose. To conduct research or commercialize any biological sample without proper consent of its donor is unethical and immoral, and it is against my principles and the principles of those with which I have worked throughout my life.

With the volunteer help of my then companion, who is Brazilian and who is not a health professional as some reports have indicated, and simply helped with complementary activities such as playing with the children as I attended their parents, I provided, at their request, lawful emergency humanitarian medical attention to the Karitiana, with the best of my knowledge. I did not promise them future medical services or medicines as this is the role of the Brazilian Health Ministry, and I did nothing to hurt the interests or the culture of the Karitiana or any other people with which I have worked in over fifteen years of anthropological and medical service in the Amazon. A complete report of my emergency medical activities in the village was sent to the Karitiana Association, to the FUNAI in Brasília and in Rondônia, to CIMI and to all State and Federal authorities that have sought information about the case.

Several scientific papers published in the 1980s and 1990s show that the Native American biological material at Coriell comes from the Stanford/Yale collection and was gathered in the 1980s by North American researchers led by Dr. Francis L. Black, a world renown geneticist. The material was already announced for sale in April of 1996, fully five months before my first and only stay among the Karitiana, hence it is impossible that I have anything to do with Coriell’s samples. I never had any dealings with Coriell or any other commercial enterprise in the USA or elsewhere, and I have never been in any other Indigenous territory in Brazil. On February of 1997 I and other Brazilians tried to contact the company about their material and talked with Brazilian politicians about the need to investigate the legality of their procedures. We received no answer. Without ever hearing me, since 1997 there have been dozens of reports published in newspapers and on the web presenting information in a distorted manner and suggesting that I have some relation to the samples being commercialized, instead of acknowledging my clear and only intent which was to provide the Karitiana with emergency medical assistance according to the Brazilian medical regulations and international humanitarian mandates. The irresponsible publication of wrong information has generated a Federal Court case against me, which has been contested, two congressional hearings, both of which have cleared me of any wrongdoing, and have seriously hampered attempts of other physicians and researchers to work among Indigenous populations, which as is well known, are in extreme need of assistance. I have responded immediately to all news about this matter that come to my knowledge; however, the grotesque errors such as this in the NYT continue to be published.

Bio-piracy, as all forms of piracy, is a matter to be seriously investigated and fought against by authorities, scientists, the public and the press worldwide. The generation of profit of biological products without benefit to their donors is immoral, unethical and should also be illegal in all countries. As a Brazilian citizen, a health professional, an anthropologist and a scientist it is my duty to protect the best interest and well-being of the people I work with. This has been my practice all along my career. As a professional with dozens of international publications and a faculty at the Universidade Federal do Rio de Janeiro all my contact information is easily accessible on the Internet, and I have always made myself available to anyone interested in knowing the truth about this horrible situation in which my name was involved. Currently there are several websites in different languages reporting the correct facts of the events, unfortunately, Mr. Rohter did not look them up or contacted me. I have been accused of barbaric acts when in fact I only attended the emergency medical call of a native group in need and followed the mandate of the Brazilian Code of Medical Ethics, in its Articles 57 and 58. It is very unfortunate that instead of investigating the truth, reporters and news agencies care only for sensationalism, regardless of its costs to peoples’ lives and careers.

Prof. Dr. Hilton Pereira da Silva, Department of Anthropology, Museu Nacional/UFRJ. Rio de Janeiro, Brazil

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