In the Amazon, Giving Blood but Getting Nothing

New York Times
June 20, 2007 Kyowã Journal

By LARRY ROHTER

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".

Copyright 2007 The New York Times Company