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The Yuchi Community and the Human Genome Diversity Project: Historic and Contemporary Ironies

Richard A.

The Yuchi Community and the Human Genome Diversity Project: Historic and. Contemporary Ironies

On October 14, 1993, Professor John H. Moore, chair of the Anthropology Department at the University of Florida and a member of the Human Genome Diversity Project (HGDP), addressed a broadly representative group of Yuchi (also spelled Euchee) community members in Sapulpa, Oklahoma, in order to introduce them to the HGDP. "I'm here tonight," he began, "to try to describe to you an opportunity for participation in a very large and well-funded research project that may or may not be interesting to you." The already existing interest of the community in the topic was represented by the number of community members in attendance and is clear from reviewing the video tape which was made of the proceedings. Due to Professor Moore's recent and long tenure at the University of Oklahoma and his supportive involvement with concerns of the University of Oklahoma and his supportive involvement with concerns of the traditional ceremonial grounds found in the eastern part of the state, he and many of the people in the room had a long-standing, positive relationship. Not only was this the first time that the Yuchi community was made directly aware of the HGDP, they were the first indigenous group in North America to be directly contacted by a member of the HGDP.

The central issue in this interchange takes the form of a question - being worked out within a particular community context - about what it means for a traditional people to have genetic material extracted from their bodies. Even if the generally positive intentions for project were to be acknowledged, the more immediate goals and methods may seem invasive or alien to the daily existence and common experience of the community. The discussion of these issues within the Yuchi context presents a microcosm of the larger controversy.

This first exchange evoked many of issues which continue to swirl in debates between proponents of the HGDP, on one side, and a number of Indigenous and Native American advocacy group along with other critics of the project on the other. In summarizing the development of the HGDP and explaining the basic dynamics of how the project was to work through the selective DNA sampling of distinctive communities around the world, Professor Moore stressed the positive potential outcomes for medical research which could be of benefit to the global human community. This emphasis surely reflected his real hopes for the project to which he came after investing years or research toward providing relief for the extremely high and devastating incidence of diabetes among Native American populations. The Yuchi community was advised that they had an opportunity to present a proposal to participate in a yet-to-be-funded pilot project. This proposed project was to carry the prominent incentive of providing additional funding for collateral projects of direct community interest such as language preservation, cultural retention efforts, genealogical research, and historical documentation. Thus, the fundamental question, what is in it for the community, was anticipated by pointing to the potential health benefits and by the building-in of flexible funding for application to broader community needs.

However, the ensuing debate, with tribal member Corky Allen representing a prominent voice of concern, continued to push this basic question and echoed the widely raised critiques about the project. Questions persisted around such issues as the ownership of data and the potential for extremely lucrative profiteering based, once again, upon Native American resources. The project was further challenged by Jackie Warledo, member of the Seminole Nation of Oklahoma who serves on the national council for the Indigenous Environmental Network, for the lack of effective means for sale-guarding the interests of the community into the future. Ironies of Yuchi Existence

At the time of these proceedings, the Branch of Acknowledgment and Recognition of the Bureau of Indian Affairs was being petitioned to grant federal recognition to Yuchi people as an independent political entity. It was hoped that the status as a recognized tribe would provide a great political boost and eventual financial boon for such Yuchi efforts as cultural preservation and language retention. The potential contribution of the HGDP was not overlooked in the exchange at this initial meeting. Indeed, the primary rationale given for introducing the possibilities of Yuchi involvement with the HGDP was their unique language coupled with their distinctive history. According to the working guidelines of the project in identifying preferred categories of populations, those communities who have most successfully retained distinctive languages are presumed to have the greatest potential for also bearing distinctive genetic material. A Preferred Population

The recognition of the Yuchi language as a language isolate among the otherwise largely linguistically interconnected American Southeast give the Yuchi striking potential for the project. Further, the presence of "fullbloods" among the Yuchi community, four and a half centuries after their first contact with De Soto, amplifies the possible significance of the Yuchi case for the HGDP. Yuchi distinctiveness was maintained over centuries in the midst of an area rich with cultural, social, and physical cross-fertilization between various Native American groups, together with peoples from Africa and Europe. Finally, the linkage of these considerations with the current potential for increasing out-marriage by community members - resulting in a change in unique genetic patterns borne from sustained isolation - further enhances the priority of the Yuchi case as a preferred population of the project (see Science, November 20, 1992: 1300-1301).

However significant the concerns - emphasized by Dr. Moore - over potential health benefits, these concerns remain secondary within the project's stated overall agenda. The primary impetus for the HGDP comes from an interest in the classic questions of archeology, cultural anthropology, historical linguistics, and history which are now being addressed in collaboration with the expertise of geneticists and bimolecular scientists. In the words of the HGDP Summary Document from the Porto Conte, Sardini workshop: "The main value of the HGDP lies in its enormous potential for illuminating our understanding of human history and identity" (p.l). This is defended in the document with "the primary case" which is made on behalf of the HGDP: "There is a cultural imperative for us to... use the extraordinary scientific power that has been created through the development of DNA technology to generate - for the benefit of all people - information about the history and evolution of our own species" (p.7).

Such questions - seeking to sort out the origins and past relations of historic and contemporary peoples - are, in general, far removed from the concerns and framework of traditional conceptions regarding a people's own past. Within most indigenous epistemologies the questions of origins, the understanding of a people's past, and early relations to other groups are dealt with in a very different way. Those communities know where they came from, who they are, and what their relations to the land are. Thus, if indeed the primary motivating questions for the HGDP are seen as largely foreign by traditional communities, there would seem to be an inherent presumption suggested by the phrasing, "for the benefit of all people." Despite positive intentions, a benefit designed with little regard to the perspectives of traditional communities may find difficulty communities may find difficult gaining acceptance from targeted beneficiaries/donors.

However, the possible ramifications of this unprecedented level of scientific analysis for current issues of indigenous peoples, such as repatriation and the establishing of previous territorial ranges, are enormous. As Professor Moore pointed out in an animated response to questions from community members: "How many times have you heard, `you are living to the bones of your ancestors'? This project will enable those ancestors to speak, and to say, `I am a Yuchi... I want to go with my people. We used to live here.'" It was also pointed out by Professor Morris Foster of the Oklahoma University Anthropology department that ongoing efforts by Yuchi people to gain federal recognition could only be strengthened by a highly regarded scientific analysis of Yuchi DNA patterns - assuming that the study did indeed show the community's biological uniqueness. Federal Recognition Denied

In the following months, as it became increasingly clear that the Yuchi petition for recognition was to be denied, the extreme irony of the Yuchi position relative to the HGDP also became clear to community members. Corky Allen stressed this irony to the United Nations Special Rapporteur, Dr. Miguel Alfonso Martinez, on September 24, 1994, on the floor of a session for the U.N. Study on Treaties, Agreements and Other Constructive Arrangements between Indigenous Populations and States which was convened at Oklahoma State University in Stillwater, Oklahoma. Mr. Allen later summarized his perception of this irony with sharp comments: "How can one arm of the government say that we don't exist when we do exist, and when another government-backed program wants to study us?" In his view, it is overwhelming that one federally financed program can "identify you as a unique, distinct Indian tribe - so much so, that they want to draw your blood - while another agency does not use this information in drawing their conclusions [about your existence as a viable tribe]. Our DNA is regarded as a vital, irreplaceable part of the global heritage of humankind, yet we are denied federal acknowledgment which would give us a political standing, more clout, in the fight to keep our language, our culture." Popular and Academic Denials

Indeed, my own research as a scholar and Yuchi community member has uncovered an extensive, dark legacy of published report which implicitly or overtly deny the community's existence (see selected examples in sidebar). Academic discourse is often bounded by and reflects the dynamics of popular conceptualizations of Native Americans. Yuchi people, like other Native Americans, are repeatedly confronted with many specific expressions of a broad cultural injunction which would deny the right of Native communities to a full existence. Our Native children know those common phrases: "the only good Indian is a..."; "Today is a good day to die"; "From where the sun now stands, I will fight no more forever," etc. They are familiar with the popular images of "The End of the Trail" and of wooden Indians as stiff, unchanging figures of the past.

Academic discourse, often viewed as "objective" and value-free, ultimately has real impact on Native American peoples. At a scholarly conference held a few years ago in Columbus, Georgia, Yuchi community members were subjected to a lecture on the theme: "Who Were the Yuchi?" The speech was delivered as if there was no one from the ongoing community to answer from the question in the present tense. Some of the Yuchi attendees discussed among themselves in the Yuchi language this strange circumstance of being a Yuchi person witnessing what appeared to be a scholarly obituary on their own community. Two married Yuchi elders raised the question: "How come we exist for them t write about us, but we don't exist for ourselves?" Their rejoinder underscored the problem of attempts to define the existence of a community, not in its own terms, but in relation to an external agenda. The response of Yuchi artist, Richard Ray Whitman, was deliberate, protracted, and appropriate to his training and gifts. After returning home, he produced a large college on canvas, using acrylic and sacred earth. He responded to the question of "Who were the Yuchi," by posing the counter-question, "Who ARE the Yuchi?" Community Continuity

Yet, despite frequent denials and many challenges, the Yuchi community continues to exist. Contemporary Yuchi people are the inheritors and bearers of an unbroken ceremonial continuity. The group, with a population of perhaps 2600, is made up of a distinct, rich, and yet diverse people working in various political alignments toward personal, family, and community goals. Many Yuchi community members find primary sources of identity in the three ongoing ceremonial grounds or in the historically Yuchi Methodist churches, while some participate in the Yuchi chapter of the Native American Church. It is probably fortunate that most Yuchi people have not been reading the numerous published denials of their existence. For this reason, they are not aware that they do not exist and so continue to carry on their distinctive lifeways. It is ironic that, while community members proceed with their push for formal political status, despite the denials and other obstacles, the pronouncements of Yuchi demise continue to be published. The spoken word of community leaders persists in opposing the (often) limiting, circumscribing language of written texts. As community elder, Mose Cahwee, asserts": "yUdjEhanAnô s'ôkAnAnô," ("We, the Yuchi people, we are still here"). A Critical Juncture

At the same time that the ongoing success of the community is to be acknowledged and celebrated, Yuchi people have arrived at a critical juncture in their long history. After generations of assault upon tradition, with the active suppression of language led by government and church boarding schools, the community is witnessing the loss of the last line of fluent, first language speakers of Yuchi. This marks a critical shift in the life of the community and its unique language which has been carried forward, generation to generation, for millennia. Even reviewing the video tape of the community meeting on the HGDP from October of 1993 is a moving experience as the community has since buried four of the elder speakers of the language who were present at that meeting.

This does not mean that the community is left without options for effective response. It does mean that it will require the most international, directed, and carefully planned actions in order to insure that the rich Yuchi heritage is kept as a full part of the living community. Extreme measures are required for this critical period. It is no longer possible for children to enjoy gaining language facility by natural immersion in homes where Yuchi is the daily language of communication. Tackling such obstacles as a dearth of financial resources and the lack of a written language, the community has begun classes and is developing written, taped, and computer materials in order to respond to the present crisis, to make it possible for a future generation to have the option of gain making the Yuchi language the first language for some of its families. Prospects for Yuchi Participation Current Project

After a series of discussion beginning with Professor Moore's presentation about a pilot project with the HGDP, one of the organized groups within the Yuchi community agreed to examine the possibilities of participating in such a project. They eventually did become involved with a research project on the Ethical, Legal, and Social Implications (ELSI) of the Human Genome Project (HUGO), conducted through the University of Oklahoma with Professor Morris Foster as the principle investigator and aided by graduate student. As Professor Foster is careful to point out, this project, as part of HUGO, is separate from the Human Genome Diversity Project, with different funding and a separate agenda.

The research project with the University of Oklahoma attempts to develop strategies for working with non-Western communities in ELSI research by exploring three categories of concern about the implications of HUGO: "1) implications for conceptions of biological substance and genealogical relationship; 2) implications for conceptions of Native history and identity; and 3) implications for community decision-making" (from project narrative). The research project is being pursued over three consecutive nine-month periods. The community's interests in participating was enhanced by the benefits of pulling together research into genealogical and historical concerns and by the fact that community participation did not require a decision about the more difficult question concerning direct participation in the collection of genetic materials for research.

In talking with a number of the Yuchi participants in the ELSI project, it is clear - despite signed Informed Consent Forms - that to date, many, if not most, of the primary participants have little understanding of the nature of HUGO in its program for preserving human genetic materials for research purposes. It may be that this is an issue intended to be more clearly addressed late into the project. When one thinks about what direct involvement in either project would mean for the community, it may not be surprising that a clear distinction between the HGDP and HUGO is not often made. Community Attitudes

The prospects for Yuchi participation in the HGDP involve a number of inter-related and complex factors. In some ways the potential for Yuchi participation rests upon Yuchi attitudes toward the project and related issues. As one leading fullblood sarcastically summed up the attitude of many: "I told them that if they wanted any of my blood it would cost them a million dollars." Alternatively, he offered that perhaps something could be worked out in exchange for federal recognition. It is absolutely clear from speaking with today's elder that their "old people" would not have even considered working with such a project. However, it is a new day, with changing attitudes, and the older generation is not sure what the younger generation may choose to do. Cultural Issues

Another set of important factors are related to cultural issues. Much will depend upon how the community understand and responds to traditional perspectives on medicine. If, for example, plants are the primary source provided by Gohantony (the Holder of Breath or Creator) for combating disease, then it may be that the collection of human tissues for the same purpose might be viewed as an improper violation of separate spheres. Though many are little informed about the old ways of practicing medicine, Mose Cahwee, who is working to pass on his knowledge of traditional medicine practices, asserts that Yuchi predecessors used a good deal of medicine, which they understood well, and with which they wear successful. He points out that they also were healthier probably due to their medicine practices and their more traditional diet. He is convinced that modern science may yet learn from the ancient Yuchi knowledge of plants. It seems ironic that while Yuchi medicinal knowledge remains unexplored, there is now an interest in probing Yuchi bodies for possible health benefits through potential genetic therapies.

Mr. Cahwee relates that when the older Yuchis were first introduced to blood transfusions, they were opposed to them, since they did not know where the blood came from. They would say: "Stay away from that, if you can. Keep your Indian blood." Yet, on the other hand, he points to the benefits of such medical procedures in saving family members and goes on to suggest that medical research through a project such as the HGDP cold prove to be beneficial for the broader context of humankind. How such quandaries will be sorted out remains to be seen.

Proponents of the HGDP may feel that they can effectively respond to many of the objections and to what they view as extremist positions among indigenous community members. They may think that such characterizations of their efforts as "the vampire project" or as the ultimate colonial development of extractive exploitation are inherently flawed, likely based upon faulty or insufficient information. Yet, it will be harder to dismiss what the Native voices of caution represent. They are the current expression, the echo, of the long memory of the oppression and genocide perpetrated by Euroamerican society upon Native Peoples. The great disparity in levels of trust between Native American and non-Native American societies regarding such a project derive from fundamentally different historical experiences. The issue is not as simply as the good intentions of the members of the HGDP. Throughout Yuchi history, I can think of no major case of momentous interaction with Euroamerican society which unequivocally resulted in a generally positive outcome for Yuchis. Betrayal and loss characterize the major historical events, from the so-called "Removal" in which many Yuchis were brought in chains from Georgia to Indian Territory (now Oklahoma) in the 1830s, to "Allotment" which broke up communally held lands at the turn of the twentieth century. Even though many of the participants in those activities carried positive intentions, many negative consequences for the cultural life of the community continue to be felt today.

How members of the Yuchi community will weigh out different factors, how they will come to regard the possibilities of pursuing their own interests through cooperating with a largely foreign agenda, remains to be seen. How the community will choose to respond in the contemporary context to the wisdom of traditional understandings of medicine is still being worked out. The Human Genome Diversity Project, by uncovering the distinctive Yuchi past as embedded in unique Yuchi DNA patterns, seeks to answer the question: "Who were the Yuchi? "Yet, the promise of addressing this query all turns upon the evolving community Article copyright Cultural Survival, Inc.