Information About Intellectual Property Rights No.6
January 1995

The Human Genome Diversity Project and Its Implications For Indigenous Peoples
Debra Harry
Northern Paiute Nation, Nevada

The Human Genome Diversity (HGD) Project is an international
consortium of scientists, universities, governments and other
interests in North America and Europe organized to take blood, tissue
samples (cheek scrapings or saliva), and hair roots from hundreds of
so called "endangered" indigenous communities around the world.

On the assumption that indigenous peoples are inevitably going to
disappear and some populations are facing extinction sooner than
later, scientists are gathering DNA samples from the living peoples
before they disappear. The HGD Project refers to indigenous
populations as "isolates of historic interest (IHIs)" and expresses a
sense of urgency in collecting the DNA samples of indigenous peoples
in order to "avoid the irreversible loss of precious genetic
information" due to the danger of physical extinction.

The blood samples taken by the HGD Project will be "immortalized"
for future study utilizing a technique of cell conservation which
keeps certain cells of an organism alive and capable of multiplying,
thus generating unlimited amounts of the organism's DNA. The
immortalized cell lines will be stored at various gene banks, located
mostly in the US.

Research teams are going into indigenous communities to collect
samples from 50 persons from each of 722 identified populations.
When asked about the scientific rationale for selecting 50 persons
per group, Dr. Luca Cavalli-Sforza, a principal founder of the project,
stated "One person can bleed 50 people and get on the airplane in
one day." 1

Indigenous Communities Targeted for DNA Collection
Africa 165 South America 114
Asia 212 North America 107
Oceania 101 Europe 23
TOTAL 722
Source: RAFI-Canada 2

Known in some places as the "Vampire Project," the HGD Project was
formally adopted by the Human Genome Organization (HUGO) in
January 1994. HUGO is a multi-national, multi-billion dollar initiative
by scientists which seeks to sequence the DNA in the entire human
genetic structure. The HGD Project seeks to map the variance, that is,
the genetic differences of groups that differ from the monotype
genome that will be identified by the HUGO effort.

The HGD Project states that it will make the genetic samples available
to "the public." This policy of open access will make the data and
materials available to any one requesting it, in perpetuity. However,
there will be minimal control of access to the genetic materials once
they are stored in the gene banks. Scientists will need only to
demonstrate the validity of their scientific research in order to gain
access to the samples.

Prior Informed Consent and the Right to Refuse
Anthropologists, linguists or other individuals trusted by the
targeted group help provide entree to the targeted communities.

Although the HGD Project will seek the consent of the individuals and
populations to be sampled, what constitutes "prior informed
consent?" Who is authorized to give consent? Should consent be
required only by the individual being sampled, or also include the
governing body of that particular indigenous nation? Can consent be
granted by government officials of the nation-state in which the
indigenous nation is located? How will the project be explained in
the local language? Will the full scope of the project and the short
and long term implications and potential uses of the samples be fully
disclosed? Will potential donors be fully informed of the potential
for profits that may be made from their genetic samples? And
finally, will a decision not to consent be respected in full?

The HGD Project North American Committee has secured a grant from
the J.D. and C.T. MacArthur Foundation to develop a model protocol
(rules) for the collection of genetic samples from indigenous groups.
Project organizers plan to meet with indigenous people to explain the
project. This process will help project organizers to identify key
concerns of indigenous people, but will primarily be used to seek
their cooperation in the project.

Creation and Evolution
The HGD Project states that the research will help reconstruct the
history of the world's populations, address questions about the
history of human evolution and migration patterns, and identify the
origins of existing populations.

While the HGD Project is looking for answers about human evolution,
indigenous peoples already possess strong beliefs and knowledge
regarding their creation and histories.

The cosmologies of indigenous people are environmentally and
culturally specific and are not congruent with popular Western
theories, such as the Bering Strait migration theory or Darwin's
theory of evolution. The assumptions posed by the HGD Project that
the origins and/or migrations of indigenous populations can be
'discovered' and scientifically 'answered' is insulting to groups who
already have strong cultural beliefs regarding their origins.
Questions arise concerning the impact of the findings on indigenous
communities. For example, will theories of migration be used to
challenge aboriginal territorial claims or rights to land?

Medical and Military Science
The project will also gather information of potential or actual medical
interest, possibly leading to medical applications. In terms of
reciprocal benefits to donor groups, the HGD Project will offer token
benefits such as providing medicines, or treating easily diagnosable
medical problems.

While medical application may stem from the eventual research,
manipulation, and commercialization of the genetic materials by
scientists and developers, it is likely that only those who can afford
expensive therapies will benefit.3 The proposition that medical
applications will be developed to treat diseases is an overstated
claim by the HGD Project, designed to seduce the participation of
subjects based upon the false hope for medical miracles. The HGD
Project is not mandated to develop medical applications of the data.
The mandate of the project is simply to collect, database, and
maintain the genetic samples and data.

If indigenous people were interested in genetic research for a
genetic question specific to their group, they do not need the HGD
Project to do this work. The technology and expertise is widely
available to groups interested in genetic research.

Many in the indigenous communities are worried the research may
identify genetic information that may be used against genetically
distinct populations. The HGD Project raises the spectre of misuse of
the genetic materials or data for racist purposes, and even raises the
possibility of genocide by biological warfare.4 While scientists
disagree on the feasibility of such uses, it is difficult to predict what
will be technologically possible in ten years, or twenty. Biological
warfare has been used on indigenous peoples in the past, a reminder
of the potential threat presented by such scientific projects.

Conclusions and Recommendations
Genetic manipulation raises serious ethical and moral concerns with
regard to the sanctity of life. For indigenous peoples, any violation of
the natural law and the natural order of life is abhorrently wrong.
Scientists are genetically manipulating existing life forms, altering
the course of natural evolution, and creating new life forms. Genes
are living organisms which reproduce, migrate and mutate. The full
impact of genetically manipulated life forms cannot possibly be
anticipated.

Indigenous people must engage in community education and
discussion about the full scope of this project and the potential
dangers of genetic manipulation. It is imperative that indigenous
communities become fully aware of the implications of this project,
and learn whether any genetic sampling is being conducted or is
proposed to take place in their areas.

Every effort should be made to alert indigenous communities
worldwide of the work of the Human Genome Organization and the
Human Genome Diversity Project. The communities must be free to
reject the taking of their genetic materials by such projects or by
free-lance scientists. Groups from which any genetic materials have
already been taken may wish to ensure the return to their
possession of these materials.

Indigenous communities need to stand together and call upon the
Human Genome Diversity Project and the Human Genome
Organization to halt collection efforts. These organizations must work
directly in consultation with indigenous people and organizations
which reflect the diversity of the world's indigenous populations to
develop appropriate domestic and international policies which
protect the best interests of indigenous peoples.

Indigenous people must raise international awareness of these
efforts and develop support among all people to prevent the further
violation and assault of their human rights, further appropriation of
their natural resources, and to protect the integrity of life.

Sources:

1 "Glorification of the Genes?" Alan H. Goodman, Ph.D., presented at
the SWISSAID/WWF International Symposium "Patents, Genes and
Butterflies." Berne, Switzerland. (October 1994).

2 "Patents, Indigenous Peoples, and Human Genetic Diversity," RAFI
Communique. Rural Advancement Foundation International, Ottawa,
Canada. (May 1993).

3 Helland, Dag and Allan W. Hey, "A Short Review of Biotechnological
Methods of Relevance to Modern Vaccine Development,"
Scandanavian Journal of Infectious Diseases 76, supplement (1990):
32-38.

4 Douglass, Joseph D., Jr., "The Challenges of Biological Warfare,"
Global Affairs. International Security Council, New York. (Winter
1988).

One in a series of info sheets on Intellectual Property Rights available
from the Institute for Agriculture and Trade Policy - www.iatp.org

See IPR Info Sheet #7 "Patenting of Life and Its Implications
for Indigenous Peoples," also by Debra Harry.