Kerry Howley | June 28, 2007
You can buy Karitiana Indian DNA from a New Jersey-based nonprofit for $85 a sample. What is the impoverished Amazon tribe getting out of the deal?
“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.
“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.”
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.
Why is it that we don't actually compensate blood, organ, or tissue donors? Oh right, to protect human dignity. Someone (Leon Kass?) needs to explain this to the Brazilians.
“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 Karitiana Indians want medicine. The researchers want Karitiana Indian DNA. This needn't be a "balancing act" at all, thanks to the existence of a mutually agreed upon medium that can be exchanged for goods and services.
More on tissue and property here.
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I just want to say that I like your writings on medical issues, Kerry. I got the latest print edition, and I thought you wrote a pretty good article on experimental drugs. There are a few points that I might want to quibble with as a scientist, but it was a good article.
Great post Kerry. This is your issue, no question. You are never so eloquent and compelling as when you write on the need for open organ markets.
Great piece.
It is appalling that the samples were obtained under what appears
to be false pretenses. Jesus Chrysler, the least those jerks could
do is send some medicine in lieu of cold hard Reais.
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.....
Why is it so easy to call BS on a claim like this but it is so hard
to extrapolate and apply this same logic to what the government
does every day?
But it's for the kids.....or the community.....or the
Indians.....or society.....
Now, there is a legitimate issue here: If it's unlawful to compensate the tribe for DNA samples, and if the tribe only gave DNA with the understanding that compensation would be sent, then the people who lied to the tribe should get in trouble. Yes, yes, I agree that ideally they should be allowed to pay the tribe, but if they know that they won't be allowed to pay then they shouldn't make the promise that they can't keep.
grr I hate the NY Times website. I like to double click the
words on webpages to highlight them just as sort of a nervous tick
or a way to pass the time or something. The ny times website looks
up the word that you double click on when you do it. I can't read
anything they have.
If they said they'd give them medicine, then they should.
I don't have time to RTFA, because ProGLib has me tied up with this stupid live-blogged Voight-Kampff Empathy Test, but I imagine the scientists asked for the blood and explained that they were collecting DNA so that they could help make new medicines that would help everyone, including the Karitiana, be healthier. I know from my sales experience that people often hear what they want to hear, no matter how you try to explain it to them. You can have them sign something that explains in plain English exactly what they are agreeing to, but somehow that's just a formality to them, and what they imagine they agreed to is what they really agreed to. (Plain English not recommended for dealings with Brazilian tribes.)
Plain English not recommended for dealings with Brazilian
tribes.
Written contracts are probably not the best way to deal with
hunter/gatherer societies either. It'd be like signing a contract
with a 5 year old.
Signing contracts with Hunter-Gatherer tribes who can't understand them? Sounds like the Federal government has plenty of experience doing that.
Signing contracts with Hunter-Gatherer tribes who can't
understand them? Sounds like the Federal government has plenty of
experience doing that.
Yup. They do.
The Indians have an obligation to donate their nucleic acids to western scientists. It's covered in the social contract, which is so obvious it doesn't even need to be written down.
Jeez, it's for the good of ALL MANKIND!! Yah selfish-forest-living-in-primitive-fucks!!
grr I hate the NY Times website. I like to double click the
words on webpages to highlight them just as sort of a nervous tick
or a way to pass the time or something. The ny times website looks
up the word that you double click on when you do it. I can't read
anything they have.
Jimmy me too. I double click to highlight the line I am reading
before scrolling to be able to keep my place and those fucking
pop-ups keep showing up. That is one of the worst fucking web page
designs ever. Annoying intrusive and not at all relevant to what I
am trying to do.
Presumably, one of the reasons human organs can't be bought or
sold is because of the murder and suffering that would ensue: petty
thieves really WOULD break into people's homes and remove their
kidneys for a few bucks, leaving them in a bathtub full of ice
(proving the urban legend correct), and China would probably start
a massive harvesting of peasants' innards to help them get even
further ahead of us in trade.
With DNA, however, this injunction shouldn't apply, since the donor
loses absolutely nothing.
Maybe the medical community could just put together a CARE package
for the tribe consisting of penicillin, pants, MAXIM magazines, and
iPods.
You can buy Karitiana Indian DNA from a New Jersey-based
nonprofit for $85 a sample.
Close. It's $55 for a DNA sample and $85 for a blood sample; the
per-sample price seems to be the same for every population in their
catalog.
What is the impoverished Amazon tribe getting out of the
deal?
Probably the same thing that all these other people, impoverished
or not, are getting out of the deal:
http://ccr.coriell.org/Sections/BrowseCatalog/Populations.aspx?PgId=4
The last time I gave a DNA sample they didn't even offer to give me
a pouch of shiny beads; in fact it cost me $220.
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 2004. 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).
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