The Karitiana, a People indigenous to Brazil have recently discovered that blood and DNA collected from them in 1996–under the guise of a reasonable exchange of medicine which the never received–is being sold to scientists around the world for $85 a sample.
The Karitiana now want this stopped, and are demanding compensation for this violation and lack of integrity on part of the scientists.
From the New York Times - “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.(source)
Further Reading
A worldwide fight against biopiracy and patents on life
Captain Hook Awards for Biopiracy
Campaign to Stop the genographic project (news)
Privatizing our `genetic commons’
Ethical Humanitarian Medical Work, Not Biopiracy
In several recent news releases published in Brazil and reproduced worldwide my name has appeared linked to a case of biopiracy even though I have never been called to talk with the journalists. The news deal with the sale of immortalized cell lines of Brazilian Indians by the US company Coriel Cell Repositories.
In August of 1996 I worked as the anthropologist consultant in a documentary film for the Discovery Channel about the Mapinguari, one of 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 Karitiana 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, 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 emergencially and for humanitarian reasons exclusively 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. 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 a whole tribe and had only brought a basic emergency kit for myself and the TV team), the blood coagulated and, I was told at FNS, 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 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 Coriel Repositories came out in the press in 1997, the material was never touched by anyone at the University, and the 54 vials were delivered to the Ministry of Justice of Rondônia upon their request, in 1998. All the blood samples 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 Denise, 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 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 for sale by Coriel 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 in the USA fully five months before my first and only stay among the Karitiana, hence it is impossible that I have anything to do with Coriel’s samples. I never had any dealings with Coriel or any other commercial enterprise in the USA, and I have never been in any other Indigenous territory in Brazil. On February of 1997 I and other Brazilians tried to contact Coriel about their material and talked with Brazilian politicians about the need to investigate the legality of Coriel’s procedures. We received no answer. Since 1997 there have been dozens of reports published in newspapers and on the web presenting these facts in a distorted manner and indicating that I sold the Indian samples to Coriel, instead of acknowledging my clear and only intent which was to provide the Karitiana with emergency medical assistance. This irresponsible and wrong information published has generated a Federal Court case against me, and has seriously hampered attempts of other physicians and researchers to work among Indigenous populations, which 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 continue to be published.
Biopiracy, 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 commercial use 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 professional life. As a professional with dozens of 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. I have been accused of barbaric acts when in fact I only attended the emergency medical call of a native tribe 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.
Prof. Dr. Hilton Pereira da Silva, Department of Anthropology, Museu Nacional/UFRJ. ( hdasilva@acd.ufrj.br ).
Hilton, thank you for taking the time to pass this on. I’m sorry to hear of the difficulties you’ve had—I certainly understand the frustration of being falsely accused of something.
At the same time I also empathize with the Karitiana, who may very well have interpreted something you said as being a promise of help in the future… and then with the samples being sold, it’s not unreasonable to start wondering about “the time the doctor came to help who took lots of blood.”
If a misunderstanding between you and the Karitiana did take place, I’m sure it’s one that can be resolved easily enough. As for the assumptions being made by the media—I truly hope your efforts to vindicate yourself works out in favour of you and the truth.
Good luck Hilton, and feel free to post any updates here in the future.
It is really unfortunate that both the reporters and the Karitiana seem to be unable to differentiate my medical services, provided emergentially, free and by invitation of the head of the group, from the research work done by North American researchers which resulted in the material available at the Coriell Repositories. That research happened almost a full decade BEFORE my stay in the Karitiana village, hence it is physically impossible that I have anything to do with said material. The samples I collected have all been returned to Rondonia intact. The material at Coriell has a birth date and father´s name. The “birth certificate” was published in a scientific article written by one of the main researchers in the project(Kidd et al. Human Biology, 63(6):775-794, 1991) where the origin, the number, the ages, the genders and the time the samples were collected are very clearly stated. All the authorities in Brazil involved in the case and all the reporters have access to this article (I found it and sent it to many of them), hence there is no reason why this grave mistake continues to be published.
Hilton Pereira da Silva