From the time the first European vessels reached the shores of continents long inhabited by indigenous peoples, European colonists adopted a terra nullius world view. "Our lands were declared vacant by papal bulls you created to justify the pillaging of our lands" (Chief Oren Lyons. Onondaga 1993). Only very recent has the world begun to concede the inaccuracy of and racism behind this view. There is an almost desperate attempt by the descendants of colonizers to consign the terra nullius perspective to history, but recent developments in the area of human genetic research, engineering, and human gene patents brings back haunting and painful memories to indigenous peoples of a legacy of European colonial domination.
This article addresses two specific aspects of human genetic research, the Human Genome Diversity Project and the patenting of human genetic materials. It attempts to articulate the reasons behind indigenous opposition to both of these activities and to other areas on the spectrum of human genetic research. In order to offer an indigenous perspective it is necessary to traverse some of the broader issues surrounding the relationship between indigenous peoples and others. Past experience has shown that many westerners get very impatient with this framework. They want to "get on with it and deal with the issues" as they see them. But the heart of indigenous opinion comes from a world view that is so radically different to a western world view that norms and standards which westerners accept with ease, such as scientific objectivity, are rejected by indigenous peoples. A growing number of non-indigenous peoples are also beginning to challenge the assumptions behind these values.
Human genetic research can be viewed in the context of colonial imperial history. It is a history which in the first wave of colonization brought about the theft of lands, extermination of indigenous peoples through military invasion and biochemical warfare (deliberate exposure of indigenous peoples to hazardous substances, European viruses and life threatening diseases) at a scale which has never been equaled, nor would it be tolerated in the current global environment of universal standards of human rights. Most states, as we now know them, owe their very existence to the sacrifice of indigenous peoples and their lands. Western Development: A Fixation with Glass
In the early days of terra nullius, indigenous peoples were regarded as primitive savages. Their body parts were pickled and preserved in glass jars so scientists could study then in vitro. Science developed theories to rationalize gross abuses of indigenous peoples (such as using the physical size of the brain as an indicator of intelligence, an inherently male obsession) - theories which have subsequently been proven wrong.
Glass seems to have a lot to do with western perceptions of development, Modernization is seen as having occurred when glass windows were installed, thus transforming a hut into a house, sheds into buildings and villages into towns. Science and technology moved away from an oral tradition based on spirituality, sacredness, and timing to one based on theories and formulate and the belief that good science can replicate anything at any time, unaffected by seasons or cultural standards. Museums, set up a display facilities, locked indigenous ancestral remains and sacred objects behind glass cases for humanity and public education. Museums are now being asked to return their collections to the rightful indigenous owners.
"Savages" were traded as slaves - as commodities - amongst settlers. People paid money for their slaves and were in turn awarded exclusive ownership property rights. The slaves were theirs to do with as they wished and no one else could interfere. Slavery wasn't considered a human rights issue at first, it was seen as a commercial transaction. It took generations of protest and resistance, and the sacrifice of thousands of lives to overturn and criminalize property rights over humans. Now property rights over human genes are being legalized.
Human genes are being treated by science in the same way that indigenous "artifacts" were gathered by museums; collected, stored, immortalized, reproduced, engineered - all for the sake of humanity and public education, or so we are asked to believe. One wonders just how far we've actually come. Is this development? Is this good science? My Ancestors are Always with Me
Central to indigenous cultures is a profound respect and understanding of sacredness. Within my own culture, Maori tribes collectively have shared values about that which is tapu (sacred) and that which is noa (common). Hair, blood, mucus, the main sources used by westerners to collect DNA, are all tapu. In past times, touching the hair or even the hair comb of a Chief was punishable by death, a custom common to many other formal occasions today, Tihei Mauriora! literally translates as the sneeze (of mucus) of life. It isn't coincidental that my culture and most other indigenous cultures regard hair, blood, and mucus as being sacred. We may not have had traditional terms for DNA or genes, but we know the importance of protecting those things which could render us vulnerable. "The taking of blood, hair and tissue samples is an affront to the religious beliefs, cultural values and sensitivities of many indigenous peoples..." (National Congress of American Indians, Resolution No. NV-93-118).
Because of our respect for our ancestors, who are in every sense tapu, we regard the descendants of our ancestors, all of nature, as sacred. Hence, indigenous cultures have traditions for cutting trees, fishing, planting and harvesting crops, and using medicines. Indigenous views about the integrity of human genes, therefore, are also applicable to the integrity of all other life. "Believing in the sanctity and integrity of life even in its smallest from... All life forms should be treated in a way that respects their intrinsic value as living generational manifestations of creation" (Treaty for a Life forms Patent-Free Pacific, 1995). Indigenous peoples are not advocating one value for human genes and another value for all others. The call is the same - nature and living things, tangible and intangible, all are sacred. They are not objects, they are not property, they cannot be owned. "Every part of the earth is sacred to my people. Every shining pine needle, every sandy shore, every mist in the dark woods, every clearing and humming insect is holy in the memory and experience of my people" (Duwamish chief 1990).
For Maori, and many others, the human gene is genealogy. A physical gene is imbued with a life spirit handed down from the ancestors, contributed to be each successive generation, and passed on to future generations. Maori have two terms to describe a human gene, both of which are interlaced with a broader reality than western scientific definitions. The first is Ira tangata, which is the actual word for a gene and translates as "life spirit of mortals." The second term is whakapapa, which means to set layer upon layer. It also means "genealogy" and is the word most commonly used by Maori to conceptualize genes and DNA. The Sacred and the Profane
Western science goes to great lengths to de-humanize the humanness or life-force of human genes; hence, terms such as "specimens," "materials," "properties," and "collections" are adopted as a means to ignore the essence of life contained within. For Maori, a gene has mauri (a life-force) a do many other things, such as rocks of special significance, sacred sites, and placenta (afterbirth). The Maori word for placenta is whenua which also means land. It is customary to return the placenta of new born babies to the land and, in so doing, reinforce and personalize the bond between people and the land. Many sacred sites are those where children's whenua have been stored. It is contrary to indigenous tradition to "objectify" a gene or human organs as these are living and sacred manifestations of the ancestors; they contain a life-force that continues to exist ex-situ. The same perspective is carried over to issues of replication, immortalization, transgenic engineering, and cloning.
Scientists distinguish an original specimen from a synthetically reproduced "copy gene." They take the view that a copy gene was extracted because it is no longer "original." It has been "innovated" or, depending on one's values, tampered with. Genes into non-human species (a practice more common than many would realize, including introduction of transgenic modified products into the food chain), ethical considerations are dismissed as "moral taint." The UK Report on the Ethics of Genetic Modification and Food Use concludes, "because a number of steps are taken `in vitro' to purify and replicate the donor gene, for all practical purposes, the inserted material is not `human,' in the sense that it contains DNA derived directly from a human donor. We recommend that organisms containing copy genes of human origin may be used in the food chain subject to the necessary safety assessment."
The same applies for human gene patenting. Scientists argue that because the original collected specimen is not the subject of a patent (rather, it is a reduced, innovated and synthetic copy), the copy gene is not "human" according to the reductionist objectifying ethos. This contradicts the scientific reality that in order to have a copy or a property there must first be an original - that original is genealogy, has a life spirit, and is sacred.
A gene and combinations of genes are not the sole property of individuals. They are part of the heritage of families, communities, clans, tribes, and entire indigenous nations. In saying that, there is also clarity that there is more to being human than the physical composition of our DNA. We are shaped by our cultural values, beliefs, languages, histories, spirituality, and relationship to our lands. "We urge all our Indian brothers and sisters to act decisively and boldly in our present campaign to end the destruction of our sacred traditions, keeping in mind our highest duty as Indian people is to preserve the purity of our precious traditions for our future generations, so that our children, and our children's children will survive and prosper in the sacred manner intended for each of our respective people by our Creator" (Declaration of War Against Exploiters of Lakota Spirituality, 1993).
The survival of indigenous cultures will not come about because of gene banks. It will come from an observance by states of fundamental human rights and freedoms, recognition of the right to self-determination of indigenous peoples; attention to environmental problems (climate change, bio-prospecting, pollution); access to clean water, food and shelter for a sector of the world's population that shares in common, across continents and oceans, the lowest socio-economic status within their countries. Science and Culture
It is a feature of western science that it pretends to exist outside of a cultural framework and is divorced from political and economic considerations. That is one of the western world's greatest myths. Western science feeds the values and aspirations of free market imperialism and has developed the ultimate global factory to provide new commodities for trade, this time the raw materials for production are human genes. "To negate the complexity of any life form by isolating and reducing it to its minute parts, western science and technologies diminish its identity as a precious and unique life form, and alter its relationship in the natural order" (Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project 1995). Scientists say they pursue this work in the spirit of "Pure" science and for the sake of humanity. But a glimpse through business bulletins featuring articles such as "Genetics" The Money Rush Is On (Fortune. May 30, 1994) and "The Gene Kings" (Business Week, 8 May 1995) offer a different view.
It is difficult to articulate the degree to which indigenous and western scientific philosophies differ on such a fundamental point. The difference rest in an understanding of the origin of life and humanity, the role of and responsibilities to sacredness, and the commitment to provide, heritage for future generations. This highlights the difference in defining a human gene, its purpose, and who might be considered the "owner" or "guardian." The Human Genome Diversity ("Vampire") Project
The Human Genome Diversity Project (HGDP) promotes itself as the humanitarian project. It describes its objective, "to collect blood samples from a number of indigenous population essentially for studying human evolution and the history of human migrations, but also for the purposes of genetic epidemiology, and studying the predisposition of certain groups to genetic disease" (Luigi Luca Cavalli-Sforza, TIME, 7 February 1994). Cavalli-Sforza also envision the outcomes of the research contributing to the elimination of racism; "The variation among individuals is much greater than the differences among groups. In fact the diversity among individuals is to enormous that the whole concept of race becomes meaningless at the genetic level."
Whether one supports or condemns the Human Genome Diversity Project most would agree that to date the project has been a public relations disaster. Matters have not been helped by statements made by key HGDP proponents such as Mary Clarie King from the University of California-Berkeley, "Our hope as scientists all over the world is to be able to answer some questions that man has been asking ever since he learned to write." Have men and women only been asking questions since they learned to write? Does that mean peoples of oral traditions never asked questions?
HGDP has shown an appalling lack of judgement, first by excluding representatives of the very peoples who were to be the objects of research from early formative meetings; secondly, by ignoring the early warning signs from early formative meetings; secondly, by ignoring the early warning signs from indigenous peoples that they wanted dialogue with the HGDP; and more recently, they have dismissed as a "simple misunderstanding" the no-choice position left to indigenous peoples to condemn the project. Cavalli-Sforza told TIME (South Pacific) that the project "has been targeted by activists whose motives have nothing to do with science... [the project] is being abused by some politicians and people seeking power."
Initially, indigenous peoples simply asked for the HGDP to be halted "until its moral, ethical, socio-economic, physical and political implications have been thoroughly discussed, understood and approved by indigenous peoples" (Mataatua Declaration on the Cultural and Intellectual Property Rights of Indigenous Peoples, 1993). For reasons only those in the HGDP will know, they ignored what was a reasonable request and carried on. Now the indigenous peoples, along with non-indigenous NGOs have come out strongly in opposition, the HGDP are retreating to a pathetic position of claiming to be victims of other peoples' ignorance. The burden of proof this project will be of benefit to indigenous peoples and to the wider public rests with the HGDP. Given the widespread concerns of indigenous peoples and others it was foolish of the HGDP to shun the understood "burden of proof" responsibility of any western scientific project. The HGDP needs to address the substantive questions such as: Is this good science? Is this research a priority for those very peoples who are being targeted for genetic sampling? What benefits will they receive? The other side of the coin is to consider that if alleviating racism is to be an objective, then why not sample racists to find out if they have a genetic predisposition to their disabling condition? If a genetic cure for racism could be developed, it would truly be a miracle treatment!
Why do indigenous peoples oppose it? Far from there being a simple "misunderstanding" of the visions of the project, the HGDP is viewed by many indigenous peoples as offensive, frivolous, and disrespectful of the integrity of nature, life, the ancestors - all that is sacred. The project is based on terra nullius world view that regards western models of development as rational, desirable and normal, while most indigenous peoples reject such models as irrational, destructive, and alternative. Indigenous peoples have a sacred supreme relationship with their lands and waters. They cannot be isolated or studied outside of the context of how they inter-relate with their natural heritage. That is what makes them unique. An indigenous individual is the living manifestation of his ancestors, a vessel of genealogy, knowledge, lands and waters for future generations.
The HGDP's objective to use DNA analysis to examine indigenous histories of migration is seen as terra nullius racism revisited. "As indigenous Pacific Island peoples we oppose the HGDP. Our oral histories, prayers and traditional chants demonstrate our origins" (Ka Lahui Hawai'i Sovereign Nation of Hawaii, 1995). R.C. Lewontin suggests, "As evolutionary theory has developed over the last one hundred years and become technologically and scientifically sophisticated, as vague notions of inheritance have become converted into a very precise theory of the structure and function of DNA, so the evolutionary theory of human nature has developed a modern scientific-sounding apparatus that makes it seem every bit as unchallengeable as the theories of diving providence seemed in an earlier age. What has happened in effect is that Thomas Hobbe's war of all against all" has been converted into a struggle between DNA molecules for supremacy and dominance over the structures of human life." The HGDP also assumes that knowledge, is by nature, empowering to all. It isn't.
The UNESCO International Bioethics Committee suggested that there might be "confusion of social ideologies with scientific goals," but science is only of use if it improves the quality of life and society. Without that, it serves no useful purpose to humanity, only a purpose for an exclusive, minority group of western professionals. Furthermore, the very nature of the proposed research is wholly dependent on unique cultural communities, social systems, and linguistic groupings. On what basis can one justify a separation of scientific goals and social ideologies?
The project has not only failed in its protocol-setting with indigenous peoples, it lacks clarity on matters which should have been thoroughly canvassed. For instance, the extent to which governments will be involved in the project has not been clearly delineated. If the HGDP relies on government funding it almost guarantees a bias towards the stipulations of donor governments which historically are counter-productive to indigenous peoples. Most governments actively oppress indigenous peoples which is why the socio-economic statistics are as they are.
The absence of a robust methodology for gaining the consent of indigenous peoples is a grave concern. The potential to cause division within communities is a tragedy destined to happen. If consent is held as an objective, then there must also be an understanding of dissent. As outsiders, who will the HGDP approach? Who will they consider to have the definitive vote? If 50 people say no, 20 people say yes, is that informed consent? Can consent be reduced to an individual level when the very nature of genetic research implicates a wider group? What if a chief consents but members of the community oppose? That, of course, assumes that chiefs or current structures of tribal authority are equipped to deal with these matters. "The process of negotiating `chiefs with chiefs' masks disparities in power relations..." (Maori Congress statement to The UN Experts Seminar on Indigenous Land Rights and Claim Yukon, 1996).
It needs to be stressed that indigenous peoples are not anti-science. The UNESCO Bioethics committee noted that the Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples, while calling for a halt to the HGDP, also called "for involvement in scientific research by ensuring current scientific environmental research is strengthened by increasing the knowledge of indigenous communities and of customary environmental knowledge." The 1994 Maori Congress Indigenous Peoples Roundtable meeting recommended that "indigenous research structures be established by indigenous peoples, and participation in any other national and international bodies by indigenous peoples be actively sought in order for them to monitor, approve and collect and research which affects them." The issue, therefore, is not one of anti-science. It is that most indigenous peoples do consider the HGDP to be "good" or "sustainable" science.
A further concern is the HGDP's inability to guarantee that the collections will be protected from commercialization. The HGDP seems to be torn between western humanitarian objectives and political economic realities. The fact that they are intending to allow open access to other scientists, albeit with minor prerequisites, signals a conflict of interests. How do they propose to distinguish "their" work from any others? Will the use of patents become the distinguishing factor? The HGDP is evasive over the issue of gene patenting. Nor surprisingly, one of gene patenting. Not surprisingly, one of the more recent indigenous declarations demands that the project "be asked to make an accounting of all the genetic collections they have taken from indigenous peoples and have these returned to the owners of these genes" (Beijing Declaration of Indigenous Women, 1995). Patenting of Human Genes: The Hagahai Patent
To understand the implications of the Hagahai Patent there are at least four tiers of benefits and detriments that ones must explore: (1) for the Hagahai, (2) for Papua New Guinea, (3) for all other indigenous peoples, and (4) for humanity. 1. The Hagahai tribe of Papua New Guinea's Madang Province number approximately 293 members whose first contract with the outside world was as recent as 1984. Their experience is similar to what many other indigenous peoples went through over 500 years ago. It is one that marvels at the wonders of European technology and recognizes the potential for development and an enhanced quality of life. Trust, hope, and awe are the operative values governing how the "outside" world and people are perceived. Guns have been replaced with needles and medical treatment. Post-contact, the Hagahai were in danger of extinction due to European diseases such as malaria and pneumonia for which they had no in-built immunities. Dr. Carol Jenkins, a principal researcher at the PNG Institute of Medical Research, was the European face who responded to their call for help. She provided the Hagahai with tangible and critical medical assistance and became their respected friend. This is the Hagahai reality. 2. On discovering genetic qualities of the Hagahai that seemed to render them immune to leukemia and degenerative neurological diseases, Jenkins and four other colleagues made a decision to take out a US patent on components of the genetic qualities of one of her Hagahai friends, and assert a worldwide patent through the World Intellectual Property Organization (WIPO) International Patent Cooperation Treaty. The Hagahai patent grants to a US government agency ownership of genetic properties of a citizen of a foreign developing country. There are many other tribes in PNG who still have not yet been "discovered." What does their future hold? "Of the estimated 3.7 million PNG population, 70% are illiterate. Only 73 of every 100 children attend primary school and only 35 complete the course" (Papua New Guinea National Report to UNCED 1992). This is the PNG reality... 3. "Last week, Dr. Jenkins, an American citizen, was hauled off an international flight at Port Moresby's Jackson Airport by (PNG) Foreign Affairs officials who accused her of being a bio-pirate" (Sydney Sunday Telegraph, 31 March 1996). Following a meeting with PNG Foreign Affairs Secretary Gabriel Dusava, Dusava stated that "Dr. Jenkins wanted opportunities for spin-offs to the people in rural health and education. Mr. Dusava said that the meeting had highlighted that there was an apparent lack of appropriate patent law to regulate research and ownership of research, including virus in the blood, plants and traditions" (The Papua Guinea National, 28 March 1996).
Patents are not a tool of humanitarian research. They are a tool of commerce and exclusive property rights that serve to give signals to other: "stay away, they're mine. I own them." "Life patents are not necessary for the conduct of science and technology, and may in fact retard or limit any benefits which could result from new information, treatments or products" (Blue Mountain Declaration, 1995). It is one thing to copyright research results, it is a completely different matter to patent the genetic properties of those one is researching.
The Hagahai patent and the HGDP highlight the illusiveness of informed consent, a doctrine that is as fleeting as "objectivity" and a "level playing field." What kind of discussion took place? "Informed Consent' is a total illusion for the indigenous peoples in PNG. The Hagahai tribe were just introduced to modern medicine, and for the first time to the sight of a white woman. Immunization of diseases unheard of in that area was quickly introduced much to the confusion of the people. Blood samples were collected much to the amusement of the locals. Sing language was the obvious mode of communication [rather] than spoken words. Obviously the work of the HGDP and the PNG [Institute of] Medical Research was much beyond the knowledge and comprehension of the locals who were subjected to this research. Would you call this `informed consent'?" (Individual & Community Rights Advocacy Forum, Papua New Guinea, 1995).
It assumes equality amongst cultural negotiators that simply does not exist because of the difference in world view and power. The Hagahai patent is not an isolated case, and it has become a global issue because the assumptions methodologies, and protocols that enabled it to occur have relevance to all of us. Before this, the US government attempted to patent the cell lines of a Guaymi woman. Who is next? This is the indigenous peoples' reality. 4. What mechanisms are in place to distinguish communities from states? If states give their consent through national intellectual property rights legislation, but communities do not, is that still informed consent? In pursuit of pure scientific goals, are scientists and lawyers ignoring the social, political, economic, and cultural realities? "This type of research will have a negative impact on future health programmes and projects in Indigenous communities, by undermining Indigenous peoples' trust in the medical and health professions" (Pan American Health Organization Resolution on HGDP, 1993). There is a reason that societies regulate the activities of their members. Some actions are simply destructive. Is this really what the world wants? When we are facing a global crisis of environmental pollution, scarcity of clean water, over-population, escalated violence, and poverty, how constructive is genetic research? Ultimately, this is what all of humanity must face. Where is this Going?
Indigenous peoples are clear that this new field of human genetic research and gene patenting is taking science and commerce into a dimension that is uncharted in the western world, but for which there exists deeply held traditional values that tell us this is not good science or good practice.
Just where do westerners think this is going? At what point does an individual scientist, lawyer, health professional, researcher reflect on their individual activity and see where it fits into a much broader context? At this rate, immortalized genetic properties of indigenous peoples will end up on the commodities market alongside pork bellies and sausage skins.
What is certain is that international standards are urgently required. Currently, there is no instrument of international law that specifically addresses the status of human genetic research, gene patents and genetic commercial "products." That the government of the United States could assert a worldwide patent claim over genetic qualities of a citizen of Papua New Guinea high lights so many issues, of which sacredness and national sovereignty are but two. RAFI advocates the needs to take a case to the World Court to seek an opinion on the legal status of global patents on genetic resources. Many indigenous people agree with this approach, but because it is dependent on a UN member state assuming responsibility for this action, indigenous peoples are also developing and promoting mechanisms to delay or halt genetic sampling and wider bio-prospecting proposals within their respective communities.
In the meantime, indigenous peoples will continue to be oppressed. More of our lands, sacred sites, and traditions will be desecrated and misappropriated. Our rights to self-determination will continue to be denied. Of what benefit will the HGDP and gene patents be to us? The world is not ready to be free of racism; the greed for more land, more of nature, and more commodities has become a cancer that even geneticists cannot cure. Article copyright Cultural Survival, Inc.
