Genetisch materiaal indianen te koop op internet

De website van het onderzoekscentrum verkoopt levende cellen van Karitiana- en Suruí-indianen en materiaal van andere bevolkingsgroepen in Zuid-Amerika en elders in de wereld. Het centrum is onderdeel van het Amerikaanse Coriell Institute for Medical Research in Camden, New Jersey. Het materiaal is volgens het niet-commerciële biomedische onderzoeksinstituut alleen bedoeld voor wetenschappelijk onderzoek. Vanaf 1964 verstuurde het instituut 120.000 celmonsters en 100.000 DNA-monsters aan wetenschappers in 55 landen.

De verkoop van genetisch materiaal is onder de Amerikaanse wet legaal. Toch heeft de voorzitter van het Bureau voor Indiaanse Aangelegenheden in Brazilië (FUNAI), Mercio Pereira, Interpol vorige maand gevraagd een onderzoek in te stellen naar de verkoop, omdat ze van mening is dat het genetische materiaal van de Karitiana en Suruí-indianen verkregen is zonder toestemming van de betrokkenen. Het meeste materiaal wordt niet door Coriell zelf verzameld, maar door andere onderzoekscentra ‘gedeponeerd’ in de celbank van Coriell.

Voor onderzoek in Braziliaanse inheemse gebieden is toestemming vereist van het Braziliaanse ministerie van Wetenschap en Techniek en andere overheidsinstituten. Vervolgens legt FUNAI de plannen voor aan de betreffende bevolkinggroep en pas als die toestemming geeft, kan het onderzoek van start gaan. Door zoveel mogelijk controle uit te oefenen op de wetenschappers die onderzoek willen doen in inheemse gebieden, probeert FUNAI te voorkomen dat op illegale wijze genetisch materiaal wordt verzameld. Veel Braziliaanse onderzoekers zijn niet blij met die werkwijze. Zij vinden dat ze daardoor in hun werk belemmerd worden.

Volgens FUNAI is al langer dan tien jaar bekend dat bloedmonsters van de indianen belanden bij buitenlandse bedrijven en onderzoeksinstituten, terwijl daarvoor geen officiële toestemming is verleend. Aan het einde van de jaren negentig dreigde FUNAI al het biomedisch onderzoek onder indianen te blokkeren toen Coriell genetisch materiaal van deze bevolkingsgroep beschikbaar stelde voor verkoop. In 2002 werd een rechtszaak aangespannen tegen de Braziliaanse arts Hilton Pereira da Silva, omdat hij bloedmonsters van indianen illegaal zou hebben verkocht aan buitenlandse bedrijven. Die zaak vordert langzaam, omdat Pereira da Silva momenteel in de Verenigde Staten woont en niet ondervraagd kan worden.

Coriell Repository heeft de grootste collectie menselijke celculturen ter wereld. De cellen worden verkregen uit bloed en huidmonsters. Ze kunnen onder extreem lage temperaturen onbeperkt in leven worden gehouden. DNA uit de cellen wordt gebruikt voor onderzoek naar medicijnen ter bestrijding van onder meer kanker, de ziekte van Alzheimer, diabetes, het syndroom van Down en hartkwalen, zegt Coriell op zijn website.(JS/ADR)

Coriell Cell Repositories - Human Variation Collections: http://locus.umdnj.edu/nigms/cells/humdiv.html

RECHT VAN ANTWOORD

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 U.S. company Coriell Cell Repositories.
In August of 1996 I worked as the bioanthropologist consultant in a documentary film for the Discovery Channel about the Mapinguari, one of legendary creatures that is supposed to live in the Karitiana Indian territory in the State of Rondonia, 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 had some medications, several people in the village were at risk of dying of dysentery, dehydration, malaria, tuberculosis, flu etc. In one of the conversations during filming the Headman of the tribe, after finding out that I am a physician, asked, in the name of their Karitiana Association, if I could stay a little longer after the end of 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, for humanitarian reasons exclusively, and completely free, 162 individuals.

All of them came to me voluntarily, and 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 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 Belem, Para, which is linked to the Ministry of Health. I did not collect over 160 samples as some reports say. As this was unexpected I did not have that many vials on my emergency kit. 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 samples coagulated and, I was told, were no longer suitable for biochemical analysis. In order to try to recover any useful information from the samples, I took the material to the Universidade Federal do Para, where I deposited all the samples 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 Coriell Repositories came out in the press in 1997, the material was never touched by anyone at the Universidade Federal do Para, and it was all delivered to the Ministry of Justice of Rondonia upon their request, in 2004. All the blood samples collected during my emergency medical work for the Karitiana went to the Universidade, 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 support of my 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 consultations 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 Brasilia and in Rondonia, and to CIMI.

A simple web search, and several scientific papers published in the 1980s and 1990s, show that the Native American biological material for sale by 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, likely with the permission of FUNAI, and was already being announced for sale in April of 1996 at the annual meeting of the American Association of Physical Anthropologists, in the USA. I never had any dealings with the Coriell Repositories or any other commercial enterprise in the USA, and the Coriell samples started to be sold in April, fully five months before my first and only stay among the Karitiana in August of 1996, hence it is impossible that I have anything to do with Coriell’s samples. I was never in any other Indigenous territory in Brazil. In February of 1997 I and other Brazilian professionals tried to contact Coriell about their material and talked with Brazilian politicians about the need to investigate the legality of Coriell’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 Coriell, 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 disturbing that instead of investigating the truth, reporters and news agencies care only for sensationalism.

Dr. Hilton Pereira da Silva, Universidade Federal do Rio de Janeiro