TITLE: Tribes meet to discuss genetic colonization - Report from the "Colonialism Through Biopiracy" conference AUTHOR: Debra Harry, Coordinator, Indigenous Peoples Coalition Against Biopiracy (IPCB) PUBLICATION: submitted to BIO-IPR by the author DATE: 28 October 1998 SOURCE: IPCB URL: http://www.niec.net/ipcb TRIBES MEET TO DISCUSS GENETIC COLONIZATION A REPORT FROM THE COLONIALISM THROUGH BIOPIRACY CONFERENCE by Debra Harry, Coordinator, Indigenous Peoples Coalition Against Biopiracy The Confederated Salish and Kootenai Tribes and the Montana/Wyoming Area Indian Health Board hosted a conference on North American Genetic Research and Native Peoples in Polson, Montana at the Kwataqnuk Resort on October 11 & 12, 1998. The conference brought together tribal leaders, cultural leaders, elders, health officials, scientists, tribal legal advisors and educators to discuss issues relating to human genetic research and indigenous peoples of North America. Leading authorities addressed the social, ethical, and legal implications of genetic research for indigenous peoples. Topics included various genetic research projects including the Human Genome Diversity Project, genetic research on ancient remains, and possible policy models for tribal protection. Chairman of the Confederation Salish and Kootenai Tribes, Mickey Pablo opened the conference with a prayer to "ask us to come to know each other better, to respect each other, and to work together as one, as our creation stories tell us that we are all made from earth." He stated it is important for Native people to remember the past because "the past is our present. Our present is our future. We are bound through our creation stories and through our religion to never desecrate those who have come before us." He spoke about having to lobby Congress to try to block proposed amendments to the Native American Graves Protection and Repatriation Act (NAGPRA) that would allow scientific study of Native American remains. "While this country was founded partly on the principle of religious freedom, American Indians still do not have religious freedom. At the Smithsonian there are boxes upon boxes, and rows upon rows of Indian human remains. Those remains are supposed to go back to the people so that they can be buried in their homeland and complete the circle of life. We need to understand that, and we hope that through conferences such as this that we can begin the process of understanding." Judy Gobert, Dean of Math and Science at Salish Kootenai College, serves as a science advisor to the Montana and Wyoming Tribes. She was asked by the tribes to find out about current and proposed human genetic research that may potentially affect them. She has identified at least four proposed research projects in Montana in the last year and half, including one obscurely titled "The Montane Ecosystem Study", as well as the larger, well-known projects such as the Human Genome Diversity Project, and National Institute of Health's (NIH) Environmental Genome Project. "Everyone is after our DNA. We are the new biological gold mine. I don't know if we have any more to give. We've given a lot. I don't think that this country should ask us to give more. I don't know that I want to give anymore." She discussed how tribes are considered research objects, not subjects. "No one has come to Indian country and said, 'we want to talk to you about genetic research on your people.' Nobody has gone to the National Congress of American Indians, or the National Indian Health Board, and said, 'we would like to talk to you about these projects.' And whenever these projects are even on the drawing board, nobody has come to us and said 'would you like to participate?' I think that's strange and arrogant considering that the focus of the research is our people." Ms. Gobert asks "Is Indian DNA another resource like timber or gold? This is what it feels like to be an Indian in this country right now." Gobert questioned the allocation of resources, stating, "I find it very troubling when we are having difficulty surviving as people, yet they would spend millions of dollars to store our DNA but nothing to preserve our culture, our language, our people, or the future of our people. The President allocated $5 million dollars over the next five years to combat diabetes in Indian country, to be shared by 554 tribes. The Environmental Genome Project has $10 million per year to collect and store our DNA. It was very hard to scrape together the money for us to even come together and talk about it. So there are vast differences in resources, and access to resources, as well as the legal kinds of battles that are going to take place over this. We are not on a level playing field." Notably absent from the conference were any representatives of the 13 member North American Committee of the Human Genome Diversity Project (HGDP) despite repeated invitations by conference organizers. Referring to the conference theme "Colonialism in Biopiracy", Hank Greely, Chair of the HGDP Subcommittee on Ethics, stated in his memo dated Sept. 18, "I have to say, though, that between the title of the conference and what I saw of the agenda for the conference as initially planned, it seems to me that anyone attending the conference on behalf of the HGDP would be cast, unfairly but irrevocably, in the role of arch villain and "bio-pirate." John Moore, Chair of the HGDP North American Committee, stated in his memo dated Oct. 9th, "there was no member of the Committee who was available to attend the meetings. We were not inclined to attend a meeting in which we had already been branded as "biopirates" and in which we had only 20 minutes to present our case. We did not feel that the conference you organized was fair in its format or participation, and so even if we had been free to attend, we probably would not have done so. If you would organize a meeting or a conference with tribal leaders which was fair and open, I would personally be glad to attend, and I would urge others on the committee to attend also. But the conference you organized was biased and not conducive to establishing communication between scientists and indigenous leaders." Debra Harry, Coordinator of the Indigenous Peoples Coalition Against Biopiracy criticized the HGDP's absence "since the project has received foundation funding for the specific purpose of communication with tribes." The HGDP is just one of several genetic research projects on the horizon that are interested in studying the DNA of indigenous peoples. Representatives from other projects did attend including the NIH's Environmental Genome Project, and the NIH's National Human Genome Research Institute genetic variation research. Richard Sharp, Bioethics Director of NIH's National Institute of Environmental Health presented information distinguishing the Environmental Genome Project from the HGDP. The NIEHS is launching a $60 million Environmental Genome Project to study the interactions between genes and environment. The Project seeks to determine genetic sequence diversity data for the U.S. population on more than 200 genes known to control susceptibility to environmentally linked diseases, and to develop a central database of variations for these genes. The Project anticipates collecting blood samples from approximately 1,000 Americans from five ethnic groups-Asian American, African American, Hispanic, Caucasian, and Native American--in order to learn what the variations and frequencies of these "environmental disease" genes are in the U.S. population overall and within ethnic groups. Brett Shelton, Native attorney and former policy analyst for the National Indian Health Board, provided a critique of the HGDP's Model Ethical Protocol. He criticized the paternalistic framework of the document, where the HGDP has the final say in everything, with tribes considered interested third parties. "But that's not an academically fair critique, and I don't want to just say I didn't like the way it reads. I have more academic and legal/policy concerns as well. It doesn't demand anything but informed consent. Who will judge if the consent is informed? The HGDP says it will, but how will they adequately judge whether truly informed consent has been obtained from hundreds of linguistically and culturally distinct tribes?" Shelton said "I asked (the HGDP) how enforcement would be accomplished, and they indicated that there will be contracts between the HGDP and people who use the samples. But who will enforce the contracts? Why should we trust the HGDP to enforce them for us? How will tribes be able to police all of the researchers in the world? How can we even know, for example, if someone grows some more samples, and gives it to someone else to use in a way we have said in a contract that we don't want it used? What could we do if we did find out about this? Sue HGDP? Sue someone else? Suits don't even always help when you have a moral right violated. One problem with dominant society is that it seems to think everything can be reduced to a dollar value. Legal challenges may result in money damages, but the money doesn't ever really correct the wrong." He stated, "the protocol is considered a model, yet it is not going to be helpful in protecting tribal rights. To have something like this be the definitive example on how our rights will be protected is not comforting at all-- in fact, it's scary. We have some serious things to be concerned about, and this Protocol is not going to help at all." George Annas, lawyer and Public Health and Human Rights professor at the Boston University School of Public Health concurred with Shelton. He served on the National Research Council which rejected the HGDP for federal funding because the proposal was too vague for consideration. He said the HGDP's proposal was plainly inappropriate for funding because of ethical issues. "No research (on humans should) be done unless there's a benefit to the population to be studied," he said. That is a difficult test to meet. He said allowing patents on genetic material is plainly wrong. No person, government or corporation should have the right to profit from genetic material taken from an individual or a social group. "If there were no patents, my guess is that most of these issues (involving ethics and gene prospecting) would be gone" he said. "The vast majority of people in the world think that patenting genes is nuts." Shelton highlighted the potential for least two critical legal doctrines of tribal sovereignty which could be threatened by genetic research, particularly the assertions of evolutionary geneticists. "Tribal sovereignty is based on a definition of Indians and tribes as 'distinct peoples' which is used to determine whether a group of people is a tribe, who have tribal rights by virtue of being in North America since 'time immemorial' which really means 'we don't know when it started.' This is the basis of some important tribal rights. Water rights, and aboriginal hunting and fish rights are a few examples. I'm not saying that the scientists have these bad intentions toward indigenous peoples, but rather that the science creates new, very serious risks for tribes. Tribes should be able to decide whether the risks are worth the benefits, and to control the risks," he said. He concluded that "assertion of tribal sovereignty to govern research within our territories is the best protection we have". Robb Hunter, lead litigator of the Confederation Salish-Kootenai Tribes, presented a prototype ordinance which tribal governments could use as a model to develop laws which regulate scientific research within their jurisdictions. Some tribes have already adopted similar research protocols such as the Akwesasne Mohawks from upstate New York. Genetic research is also impacting tribal repatriation efforts to recover and rebury ancestral remains. Marla Big Boy, tribal attorney for the Confederated Colville Tribe in Washington, provided an update on their efforts to repatriate the ancient remains of the one called "Kennewick Man," found in July 1996 on the Columbia River and dated at 9,300 years old. Tribes in the region are working together to repatriate his remains under the terms of NAGPRA, but their efforts were stymied by eight scientists who filed a legal challenge demanding the right to do further scientific study on the body. She said "we refer to him as the 'Ancient One'. To us, he is an ancestor; to the scientists, he is a specimen. No other issue has caused more pain, tears and silence among the tribal peoples in the region." The issue spurred Rep. Hastings to propose legislative amendments to NAGPRA which would allow for scientific study of ancient remains prior to returning them to the affiliated tribe(s). The issue was further complicated by an initial observation by anthropologist, James Chatters, that the Kennewick skeleton had "caucasoid traits", which he now says was a big mistake. This resulted in assertions by scientists and others that the remains could be of European ancestry, therefore the tribes have no right to reclaim his body for reburial. Ms. Big Boy says this been used to challenge tribal rights and cultural beliefs, "but the burden of proof should be on the scientists to prove there were Europeans in the area at that time." Chatters and other physical anthropologists now say Kennewick Man looks more Asian than anything. In the legal battle and mediation process involving the Army Corps of Engineers, the Department of Interior, and the scientists, Ms. Big Boy said the tribes must go through the painful process of negotiating every detail concerning the Ancient One. "We have to discuss how many grams can be taken from his body, who can be in the room, and who can see him. The Ancient One is no longer whole; he is missing a finger which was taken for DNA testing. This is causing the elders much distress, but the authorities do not understand this" she said. Alvin Moyle, Chairman of the Fallon Paiute-Shoshone Tribe in Nevada discussed his tribe's effort to repatriate the ancient remains of 40 ancestors, one of whom has been named "Spirit Cave Man," dated at 9,400 years old. Tribal demands to have the bodies returned have been ignored by Nevada State Museum authorities, who have asserted that the tribe must prove their affiliation. Anthropologists exhumed the bodies from a burial site in the Lahonton Valley Caves in 1940, but the US Fish & Wildlife Service didn't inform the tribe they had the bodies until 1996, when the Nevada State Museum curator wanted permission to do further studies. Moyle said "there is no question of tribal affiliation in this case. Tribal oral history, and artifacts taken from the site definitely link us to this man." He said even though it is clear the terms of NAGPRA have been violated, he believes the Nevada State Museum authorities are hoping the Hastings amendments to NAGPRA will allow them to keep and study the remains they are holding in their facilities. For additional information contact: Debra Harry, Coordinator Indigenous Peoples Coalition Against Biopiracy PO Box 72 Nixon, NV 89424 USA Tel: (1-702) 574 02 48 Fax: (1-702) 574 02 59 Email: dharry(at)niec.net http://www.niec.net/ipcb