Native Americans, Scientists, and the HGDP
I joined the Human Genome Diversity Project (HGDP) in 1992 to help select those Native North American societies which were the most interesting, from an historical standpoint, and might benefit from a genetic analysis to determine their historical relationships to other Indian people. One interesting group, for example, is the Yuchis (also spelled "Euchees"), culturally and linguistically distinct from the Creeks, but nonetheless administered with them in Oklahoma for over a hundred years by the U.S. Government, and currently struggling for their separation and sovereignty. Another group struggling for cultural recognition is the Oklahoma Apache Tribe, formerly called "Kiowa Apaches," who have been separated from the Kiowas administratively, but are still striving to establish their own separate legal and ethnic identity. They own oral traditions and the evidence from linguistics indicate that they came from Canada within the last three hundred years, and do not share any recent history with other U.S. group identified as "Apache." Their oral traditions could be confirmed by genetic analysis.
Involved in examining these kinds of questions, I was shocked when the first attacks on the HGDP were made in 1993. I was shocked both because the attacks were so vicious, and because they were so unfair. Until that time, I held always considered myself to be on the right side, the progressive side, of issues in Native American affairs. I had worked with the American Indian Movement (AIM) since 1976 on issues of police brutality, FBI surveillance and political sovereignty. I had worked on the Black Hills claim and was still involved with the claim for the 1864 Sand Creek Massacre. I had testified in court as an "expert witness" to recover adopted children for the Navajos, Kickapoos and other nations whose children had been essentially kidnapped by white lawyers. I had worked with the Native American Right Fund on issues of religious freedom and treaty rights. Most of the time I was not paid. To top it off, the Indian students at the University of Oklahoma in 1987 had selected me as the "Most Helpful Faculty Member," and had given me a plaque. So, I felt secure in my reputation as one of the "good guys" on the Native American scene.
But now suddenly I was being accused of 1) helping the CIA to make "gene bombs" to intimidate or attack enemies of the United States; 2) helping to design a race of slaves, create in the laboratory, who would work without complaint on tropical plantations; and 3) serving as an "advance man" for pharmaceutical companies who would collect valuable Indian genes and sell them for millions of dollars. At the height of the hysteria about "the Vampire Project," an old friend from AIM called me to reassure me, or so she thought. "Don't worry, John," she said, "we don't think you're truly evil, you're just terribly naive." I didn't know whether to thank her or not. Better naive than evil, I suppose. Another Indian friend asked me seriously if I had been drugged by the CIA to participate in the Project. I told him I didn't think so - but I suppose drugged person is always the last to know. Yet another old acquaintance called me from South Dakota to ask why I didn't care that the human genes being injected into cows to improve their milk were causing calves to be born with human faces. I didn't know what to say. Yes, I did care? No, I didn't care?
Concerning my naiveté about "gone bombs," let me make it clear up front that I think the CIA and the Defense Department would be perfectly willing to make a "gene bomb" if it were possible to do so. So far in the 20th century, the U.S. Government has shown no restraint whatever in developing hideous methods of killing people, like germ and chemical warfare, and sometimes has used such weapons as napalm, cluster bombs and nuclear devices. And let me make it clear also that I understand perfectly well that drug companies are in business to make money, and given the chance would extract and sell for profit any valuable gene product they might find among the indigenous peoples of the world. All of that is perfectly true, but it has nothing whatsoever to do with the Human Genome Diversity Project.
It's accurate to say that I and others in the Project were naive before the attacks began in 1993. But we were not politically naive, rather we were culturally naive. We did not understand the extent to which the public in general had become fearful of genetics research, and we did not understand the extent to which native peoples around the world had become suspicious of scientific researchers, sometimes for very good reasons. Our timing was bad. We became visible on the cultural scene just at the right time to become targets and scapegoats for all kinds of fears and concerns about genetics research. Genetics in American Popular Culture
There are enough real issues to worry about in genetics research without inventing new ones in song and story. And this is not the first time in American history when the arts and the media have encouraged the general public to take in irrational and unrealistic perspective on new developments in science. Most of us are familiar with the Frankenstein genre, where some obscene form of life is created in the laboratory by scientists (some of whom are evil and others merely naive), or the "mutant" movies of the sixties, I which a nuclear reaction creates some monstrous life form which threatens the earth and its people. Creative artists make it their business to seize upon technological discoveries by scientists - such as electricity or nuclear fission - extrapolating the basic facts into fantastic and entertaining pieces of fiction. In the 1990s we are in the midst of a period in which writers and movie-makers are extrapolating our new knowledge of disease and genetics into such movies as Andromeda Strain (the original and my personal favorite), Jurassic Park and Outbreak. But let's keep our heads. This is fiction, not fact. Just as you can't take parts of dead people and energize them in the laboratory with electricity to make Frankenstein's monster, neither can you make a gene bomb or create a race of slaves in a genetics lab.
So the first criticism I would level at some of the critics of the HGDP is that they don't have a clear idea of what is possible and what is not possible in the filed of genetics. Their ignorance of genetics was brought home to me forcefully in my debate on public radio with Debra Harry in October, 1995. On the program, the moderator asked Ms. Harry to explain the difference between genes, DNA and the human genome. After some hemming and hawing, Ms. Harry essentially ducked the question and changed the subject, leaving me wondering if she, in fact, knew anything at all about basic genetics. If not, that explains a lot. Certainly, it is lot easier for critics of the HGDP to believe in gene bombs and a race of slaves if they don't know the difference between a gene and a chromosome. Ms. Harry also said emphatically that there would be no medical payoff from the HGDP. How does she know ? Is she a geneticist, a medical researchers? I don't think so. Where does she get her information? Who Do You Represent?
Another problem I have with some critics of the HGDP is the issue of their legitimacy. Having spent twenty-five years in Native American affairs, I know that there are all kinds of people who claims to represent Indians. The most legitimate, to mind, are those who are chosen by local communities to represent their interests. More questionable are the tribal politicians who may or may to represent Indian communities. In many cases, tribal elections are manipulated by the Bureau of Indian Affairs or by absentee, acculturated voters so that the official tribal leader is only loosely connected, if at all, to the local people and their problems. Even less legitimate are some of the alleged Native Americans who appear on committees and institutions which spring up around public issues, such as genetic research. Sometimes these people are not only illegitimate, but very pretentious, claiming to represent tribes and groups who never heart of the, where they are unwelcome, or where the communities have not give them the responsibility to represent their interests.
It has always been amazing to me how a small group of sophisticated, urban Indians can dress up, call a press conference and convince the press and public that they are legitimate representatives of some tribe or nation, or even that they are chiefs or traditional religious leaders. In every case, however, the press and public are entitled to ask about the credentials of these "tribal leaders. I have no problem with some of the Native American leaders who have criticized the HGDP. I know they are legitimate, I know they represent a large number of other Indian people, and I am worried and concerned about what they say and what they think. But some of the Indian critics of the HGDP need to have their credentials checked.
Concerning pretension, perhaps nothing can surpass the authors of the Phoenix Declaration. After holding a meeting in 1994 condemning the HGDP, they issued a press release in which they claimed to represent not only Indian people, not only humans, but "all life forms in the Western Hemisphere." Excuse me, but doesn't representation come by consent? As one of the life forms in the Western Hemisphere, I don't recall giving this group the right to represent me. Concerning their claim to represent all plants and animals, I can't help but envision some Disneyesque scene in which birds, rabbits, deer and all the other animals are gathered in a forest clearing. When the wise old owl asks, "Who votes to have Jim Smith represent us at the Phoenix meetings," hundreds of wings, hooves, paw and tree branches are lofted into the air. "You're elected, Jim," says the wise old owl. Creating a Dialogue
Scientists participating in the HGDP are not only willing but desirous of maintaining a dialogue with the leaders of indigenous communities. Only in that way can learn what real concerns the communities might have about the Project. But this dialogue has become difficult because it has been distorted by the interference of mostly self-appointed Indian leaders, and self-appointed "protectors of Indians." I find the attitudes of these people to be often patronizing toward the Indian communities they claim to be defending. Personally, I have a great deal of respect for the ability of local Indian communities to take care of themselves. In many cases they have, after all, successfully defended their land, language and culture against the dominant society for hundreds of years. In my own experience, I have found local communities to be both wise and tough in defending their interests against outsiders. They don't need the interference of self-appointed advocates, especially those who are hysterical or ill-informed about the issues at hand.
I believe it is time for those organizations who have historically defended Indian interests to get involved in issues of genetics research. Indian communities can benefit from the advice of professional people who have their roots in Indian communities - Indian physicians, scientists and attorneys, people such as Walter Echo-Hawk, Kirke Kickingbird, Frank Dukepoo and Everett Rhoades. Genetics research is on the agenda, whether the HGDP goes forward or not, and surely it is time for the Native American Rights Fund, for example, to establish a committee on informed consent and biological contracts. In my opinion, Indian communities don't need to enter the debate about gene bombs and CIA conspiracies; rather, they need to hear good advice about the real biological and legal issues from people they know and trust. Racism - A Gift from the White Man
An unfortunate aspect of the propaganda directed against the HGDP has been the encouragement of racist ideas among Indian people about issues in genetics. Some HGDP opponents have told Indian people that each tribe has its own distinctive genes, and that a scientific researcher should have to pay a premium price to collect these unique genes. Last year a young Lakota woman told me, "The Creator gave each Lakota their own Lakota woman told me, "The Creator gave each Lakota their own Lakota genes. My genes are private business between me an the Creator. No one has any business looking at my genes."
I doubt that my older Lakota person would allege that all Lakotas were originally fullbloods and, hence their descendants only have "Lakota genes." The older generation knew that they were highly intermarried with other tribes, some from far away. Although not much genetic analysis has been done of Lakota people, it seems clear that you could find any "Lakota gene" somewhere in the population of surrounding tribes like Cheyennes, Assinibonies, or Crows, and you could find any of their genes among the Lakotas. The differences are in frequency, not in the presence or absence of a gene.
The idea that each Native American group is racially distinct and has its own genes has been encouraged by the government in its nation of "blood quantum." It's an idea which finds no support either in Native American tradition or in scientific research, but rather is derived from a method of defining the pedigree of slaves before the Civil War - mulatto, quadroon, octaroon, etc. Early in their relations with Indian people, the government began using this racial classification to define its obligations to individual Indian citizens. Ironically, in trying to protect their political sovereignty, some U.S. Indian groups have seized upon the notion of blood quantum as a way of defining citizenship and protecting their sovereignty. But it is a mistake to think that this legal and political concept has any biological significance. Whose Genes Are They?
All of these phony problems, the argumentation and occasional hysteria, have obscured from view some very important ethical and scientific problems which need to be addressed. In my debate with Ms. Harry and in other discussions with opponents of the Project, I find myself in agreement with them on what some of these major issues are. First and most important is the issue of who owns the genes. If the individuals "own" their own genes, can they sell them? If they sell a gene which someone else also has, do they have to share the money? Does a "Lakota gene" belong to each Lakota, or to the Lakota Nation collectively?
Speaking personally, I share the opinion of "Faulk" who participated by telephone in the radio talk program, Native America Calling, last October. Faulk said he was an organ donor, that he would gladly give a blood sample to anyone who wanted it, and that he hoped someone could benefit from his gift. He said he didn't care if some drug company made a million dollars, as long as his genes helped somebody somewhere. I have heard other Indian people say that they thought that anyone who would try to sell their genes and make money from the project is "selfish." Any other time in recent history, I think that most of the world's indigenous people would gladly have rolled up their sleeves and participated in the HGDP.
But the creation of the HGDP has caught indigenous peoples at a very bad moment, historically. Not only have they been ripped off in general by Europeans for 500 years, but many groups have just been ripped off in particular by scientists who had collected seeds for "scientific purposes," and then collaborated with seeds companies to produce the seeds commercially, in some cases offering them back to the indigenous sources at elevated prices. Other indigenous groups have undergone the same experience concerning their herbal medicines and the intellectual property rights which were supposed to accompany those medicines. And so, when the HGDP appeared, it was natural for indigenous people to assume that this was an analogous quest, except aimed not at their seeds or their medicines, but at their genes.
It seems undeniable that various corporate interests are currently attempting to collect the genes of indigenous people and sell gene products for profit. It is something to worry about, but it has nothing to do with the HGDP. Perhaps I'm being native again, but I believe the HGDP and its Ethical Protocols could be of great service to indigenous groups in their negotiations around issues of human genetics, if the professional alarmists would get our of the way and allow a clam and meaningful dialogue to be established between scientists on the one hand and indigenous communities and their trusted advisors on the other. The result of this dialogue would be that some communities would decide to have nothing to do with the HGDP, and that is fine. But some other communities, for their own reasons, would decide to participate, and that is fine, also.
I don't claim to be an expert about the possible medical benefits of the HGDP, but I do know something about the political and cultural potential of the project. Many Native North American groups, like the Yuchis and Oklahoma Apaches, would find it useful to have a scientific confirmation of who their relatives are, historically, either to separate themselves from other, dissimilar groups or to seek federal recognition. At the level of the individual, there is the potential in the HGDP of confirming Indian ancestry or increasing legal blood quantum for people who lack documents. In some cases, even the clan of a petitioner can be identified. Even farther down the road, it may be possible soon to return burials to the proper tribe in cases where tribes and nations have moved around and the ethnicity of an old burials is not clear. To begin these projects, a dialogue between Native American communities and scientists is required. At this point, the HGDP is only asking for the hysteria to subside, so that we can begin to talk. Article copyright Cultural Survival, Inc.