Date: Tue, 14 Mar 1995 15:53:05 -0800
NATIVE-L Aboriginal Peoples: news & information
Subject: The Human Genome Diversity Project: Implications for Indigenous Peoples
Original Sender: firstname.lastname@example.org (South and Meso American Indian Rights Center)
We reported on the Human Genome Diversity Project in Abya Yala New's Fall/Winter1993 issue. Indigenous opposition to the project has been growing since that time, and the project has yet to respond adequately to fundamental ethical problems such as those raised in this article.
The Human Genome Diversity Project (HGD Project) proposes to collect blood
and tissue samples from hundreds of different Indigenous groups worldwide
for genetic study. On the assumption that these groups are headed for
extinction, scientists are rushing to gather DNA samples before they
disappear. Then, they say, at least the human genetic diversity will be
preserved in gene banks as
immortalized cell lines. But why the
tremendous interest in saving the genes of Indigenous people and not the
people themselves? Who really stands to benefit from this endeavor? What
are the dangers and long-term implications of biotechnology and genetic
engineering? These are questions Indigenous people must ask themselves in
order to protect their interests in the face of such a mysterious and
HGD Project scientists claim to be searching for answers to questions about
human evolution. However, Indigenous peoples already possess strong
beliefs and knowledge regarding their creation and histories; furthermore,
this is not a priority concern for Indigenous people. The HGD Project's
assumptions that the origins and/or migrations of Indigenous populations
discovered and scientifically
answered is insulting to groups
who already have strong cultural beliefs regarding their origins. What
will be the impact of a scientific theory of evolution and migration that
is antithetical to an Indigenous group's common beliefs? Will these new
theories be used to challenge aboriginal territorial claims, or rights to
The often repeated claim that medical applications will be developed to treat diseases suffered by Indigenous peoples is a complete misrepresentation of the Project, and serves to coerce the participation of subjects based on the false hope for medical miracles. The Project's mandate is simply to collect, database, and maintain genetic samples and data, not to develop medical applications.
The HGD Project will make the genetic samples available to
However, it is not clear who will have access to the data and actual
genetic samples. It appears that the HGD Project will maintain an
open-access policy. This means that once genetic materials are stored in
gene banks, they will be available in perpetuity, with minimal control, to
anyone requesting access. Scientists need only demonstrate the validity of
their scientific research in order to gain access to the samples. Medical
applications are in fact likely to result from the eventual research,
manipulation, and commercialization of the genetic materials. But they will
most likely come in the form of pharmaceuticals or expensive genetic
therapy techniques. Possible benefits will go only to those who can afford
the high costs of such treatments.
The proposition that medical benefits will result from genetic sampling is further suspect since no aspect of the project will take into account the role that existing and historical socio-economic or environmental conditions play in the health of Indigenous communities.
If an Indigenous population were interested in researching a genetic question specific to their group, they would not need the HGD Project to do so. Genetic research technology and expertise is widely available. The enticement of potential medical benefits is an empty promise which will be used to gain access to communities for the collection of samples.
The HGD Project raises inevitable questions regarding both ownership of the genetic samples themselves and who stands to profit from the commercialization of products derived from the samples. The Project puts Indigenous peoples' most fundamental property-their own genes-in the hands of anyone who wants to experiment with them. In doing so, the Project opens the door to widespread commercialization and potential misuse of the samples and data.
The Project will enable
bioprospectors to stake legal claims on the
natural genetic resource base of Indigenous peoples. Some of those claims
will strike it rich, in the form of profitable patents. As in the case of
future medical applications, the direct benefits from the HGD gene banks
will go to those who can afford to invest in research, manipulation and
commercialization of the genetic data. Patent law will be the primary
vehicle which enables scientists to secure exclusive rights to the genetic
samples. Patent laws grant a limited property right to the patent holder
and exclude others from using the patented item for a specific period of
time, usually for a 17-year period.
Since 1980, when the US Supreme Court ruled that the creation of an oil-eating microbe is patentable, there has been a disturbing trend in US patent law that extends patent protection to life forms. Since then, the US Patent and Trademark Office (PTO) has granted patents for newly created micro-organisms, living animals, and for human tissues and genes, breaking the long-standing policy that animate life forms were not patentable. The National Institutes of Health, and others, have secured patent rights for fragmented gene sequences, many with unknown function and physical significance. This trend has enabled research institutions and corporations to secure patents for almost 5% of the entire human genome, and has spurred a rush for ownership of the remaining 95% of the human genome.
Does anyone have the right to own a life form or to commodify parts of the human body? While many debate the ethical and moral implications of patenting life forms, in 1993 US Secretary of Commerce Ron Brown filed a patent claim on the cell line of a 26-year-old Guayami woman from Panama. Her cell line was of interest because some Guayami people carry a unique virus, and their antibodies may prove useful in AIDS and leukemia research. Fortunately, international protest and action by the Guayami General Congress and others led to the withdrawal of the patent claim by the US Secretary of Commerce in November 1993.
Patent claims have also been filed by the Secretary of Commerce for the
cell lines of Indigenous people from the Solomon Islands. The Solomon
Islands Government has demanded withdrawal of the patent applications and
repatriation of the genetic samples, citing an invasion of sovereignty,
lack of informed consent, and moral grounds as the reasons for protest. In
early March, Secretary Ron Brown rejected these requests, stating that
there is no provision for considerations related to the source of the
cells that may be the subject of a patent application. In other words,
according to existing patent law, the source of a genetic sample is
Indigenous people must be aware that it may be extremely difficult or
impossible to recover or repatriate samples of our blood, tissues, or body
parts, once they are removed from our bodies and stored elsewhere. In 1984
John Moore filed a lawsuit claiming that his blood cells were
misappropriated while he was undergoing treatment for leukemia at the
University of California, Los Angeles Medical Center. During his treatment,
Moore's doctor developed a cell line which proved valuable in fighting
bacteria and cancer. The UCLA Board of Regents filed a patent claim on this
cell line from which they developed commercially valuable antibacterial and
cancer-fighting pharmaceuticals. Moore claimed that he was entitled to
share in profits derived from commercial uses of these cells and any other
products resulting from research on any of his biological materials. In a
significant 1990 California Supreme Court decision, the court established
donors do not have an IPR property right in the tissues removed from
their body (6).
informed consentand how it will be secured remain to be answered. The HGD Project has secured a grant from the J.D. and C.T. MacArthur Foundation (despite the expressed opposition of Native leaders) in order to develop a model protocol for the collection of genetic samples from Indigenous groups.
The concept of
informed consent raises many unanswered questions in the
minds of Indigenous peoples, such as: 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 permission be obtained for
collection of samples from the dead, or for use of fetal and placental
tissues as sources for genetic samples? 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 donors be fully informed of the potential for profits that
may be made from their genetic samples?
With genetic engineering technology today, it is possible to manipulate the 'blueprints' of living organisms. Gene technology makes it possible to isolate, splice, insert, rearrange, recombine and mass-reproduce genes.
Andrew Kimbrell, The Human Body Shop, 1994.
Though genetic engineering still seems like science fiction to many people, it is a reality. Through genetic engineering, scientists are capable of reprogramming the genetic codes of living things to meet societal or economic goals. Transgenic experiments can mix plant genome with that of animals, and human genome with that of plants or animals. The ethical and legal questions raised by genetic engineering technology are numerous and unanswered. Nonetheless, this area remains virtually unregulated. While the HGD Project itself does not plan to do genetic engineering, no safeguards exist to prevent others from doing so with the HGD genetic samples.
Genetic manipulation raises serious ethical and moral concerns for Indigenous peoples, for whom any violation of 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 implications of genetically altered life forms released into the environment cannot possibly be anticipated.
Indigenous organizations need to alert all Indigenous peoples to the work of the Human Genome Organization (the body governing the HGDP) in order to prevent the taking of their genetic materials by this project, or by free-lance scientists, and to assist groups in reclaiming any genetic materials that have already been taken.
Indigenous people must engage in community education and discussion about the full scope of this project and the potential dangers of genetic manipulation before they decide whether to participate. It is imperative that our communities become fully aware of the Project's implications and begin documenting proposed or current sample collecting. We need to form an international Indigenous research group to determine the extent of existing international protections for human materials, and to develop additional policies which insure the protection of our intellectual, cultural and biological property rights.
Indigenous people must call for a world-wide moratorium on the collection, databasing, transformation, and commercialization of cell lines and genetic materials of Indigenous peoples until international standards and regulation are put into place which fully protect the environment and the interests of Indigenous peoples.
For More Information Contact:
Debra Harry, P. O. Box 72, Nixon, Nevada 89424, (702) 574-0309 email: Debra_Harry@Together.org or email@example.com
Jeannette Armstrong, En'owkin Centre, 257 Brunswick Street, Penticton, BC V2A 1P2 (604) 493-7181
RAFI-Canada, (Rural Advancement Foundation International), Suite 504-71 Bank Street, Ottawa, Ontario K1P 5N2, (613) 567-6880