Professor Henry T. Greely Professor of Law Stanford Law School
Crown Quadrangle Stanford University Stanford California
94305-8610
USA
Fax: 415.725.0235
November 10, 1993
Dear Professor Greely,
In your response to our Human Rights Alert (October 14, 1993)
announcing that Indigenous People around the world have called for
an immediate halt of the Human Genome Diversity Project, you
stated that our facts were inaccurate. What we are seeking to do
in this letter is to clarify our stance and hopefully gain a
clearer understanding of the potential impact the Human Genome
Diversity Project holds for Indigenous communities of the world.
The South and Meso American Indian Information Center-SAIIC, is
an Indigenous organization that disseminates information, in a
variety of ways, concerning Indigenous communities of the
Americas. When we first learned of the Human Genome Diversity
Project(HGD Project), The Human Genome Project and the Human
Genome Organization (HUGO) from RAFI representatives at the Pan
American Health Conference on Indigenous Peoples in Winnepeg
Canada, in April 1993, we immediately informed our subscribers and
member organizations about the various projects and the possible
repercussions they held for Indigenous communities around the
world.
>From our correspondence with RAFI and our own investigation and
research, people involved in the HGD project and the HG Project
have been negligent in communicating the ways in which the 722
Indigenous communities selected for sample collecting will be
approached, how and by whom they will be consulted, and how they
will be guaranteed that their genes will not be used for profit
or other purposes.
Up until now, all the behind the scenes activity has been
conducted without the inclusion of the very people with whom you
plan to derive your research. As you may or may not be aware,
there are myriad Indigenous organizations that represent hundreds
of communities and thousands of Native peoples. From the various
organizations, The Continental Commission of Indigenous
Nations-CONIC, representing over 2,500 communities and
organizations throughout the Americas, is the most far-reaching in
terms of representation. Not one of its members has been directly
contacted by any member of the HGD project steering committee to
discuss the issue.
We have an array of serious concerns that, to date, have not been
addressed at all:
1) The information you gather about our genetic make-up will
be readily available to governments, foundations, and
corporations. For the past 500 years, these institutions have
waged an unbridled war of oppression and genocide against our
people. The implications are potentially devastating for
Indigenous peoples all over the world.
How are we going to be able to control these institutions
from patenting and thereby owning the rights to our genetic
material enabling them to make profits from our own blood? What
kind of regulations are going to be set to ensure that this
information is not going to be used against us in targeted
biological warfare?
2) In your statement to us you say, "The populations that will be
studied will be populations that choose to participate(and those
individuals within the populations that also choose to
participate). How will the targeted populations will be
approached? How will the project be presented to them? What
kinds of methods and tactics are going to be used to convince the
communities that by "donating blood" they will benefit in some
way? Given the history of the past 500 years, where and how does
choice factor in?
3) The notion that the Guaymi sister in Panama "donated her
blood" indicates the narrow and paternalistic way in which the
people involved regard the situation. It is still not clear how
she was approached and why the President of the Guaymi General
Congress, Isidro Acosta, was not involved from the onset. To
imply that the woman would have willing given her blood sample had
she known the U.S. government was going to then apply for a patent
on her cell-line is ludicrous. Your description does not reflect
the reality of the situation Mr. Greely and this is very
dangerous.
4) The targeted Indigenous communities have been referred to as
"Isolates of Historic Interest." Due to the relentless oppression
of the past 500 years, many of our peoples have been the victims
of genocide and marginalization, our populations have dramatically
decreased in size as our land has been overtaken and our way of
life, our culture, our traditions totally overshadowed by the
dominant capitalist mindset. In spite of this, we have endured
and are 45 million strong in the Western Hemisphere.
Lest you think we are vanishing, we are not. We are
living here and now under deplorable conditions imposed upon us by
the oppressive government regimes that try as they may have not
succeeded in exterminating us.
With all the money and effort that is going to be expended to try
to further exploit us, we believe the time, energy and money could
be better put to much better use by:
*helping our communities in our struggle for
self-determination,
*getting governments to acknowledge our way of life, honor
broken
treaties and allow us to reclaim our rightful territories,
*stopping the human rights violations against our people
and our land,
*bringing proper sanitation and medical care to our
impoverished
communities,
*stopping the multinational corporations from exploiting
and
destroying our natural resources on which we all depend.
We would like to make it clear, Mr. Greely, that we do not want to
stand in the way of research that will be to the benefit of all
humanity. However, we will not take part in any effort of the
Human Genome Diversity Project until all of the moral, ethical,
socio-economic, physical and political implications have been
thoroughly discussed , understood and approved by Indigenous
peoples. We do not want so-called "experts" to come into our
communities to try and convince us that for the sake of science we
must allow the Human Genome Diversity Project to do whatever it
wills.
What we seek is open dialogue. Until this is granted, we will do
everything we can to inform member organizations to refuse to
cooperate with the project. We hope that our concerns will be
addressed and that you will do whatever you can to ensure that
respect guides your route.
Sincerely Yours,
Nilo Cayuqueo, Director and SAIIC Staff