Untitled Document
In the Amazon,
Giving Blood but Getting Nothing
The
New York Times
By LARRY ROHTER
Published: June 20, 2007
Joaquina
Karitiana, with her son Rogerio, says researchers promised her tribe medicine
that never arrived.
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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.”