Sensitivities and Concerns of Research in Native American Communities

DR. DUKEPOO: Thank you very much, Dr. Shapiro, and thank you, Commissioners, especially Dr. David Cox and Eric Meslin, who were very instrumental, and Pat Norris, in getting me here, and thank the audience for coming.

In Indian country, sometimes we're very blunt. When I go there they have three questions for me: Who are you? Why are you here? What do you want? So I'm going to answer those.

Who am I? I'm Frank Dukepoo. I'm a Hopi from First Mesa in Arizona. I'm one of two Indian geneticists in the country. The other is Cliff Pudry, who is now at NIH. He's a Seneca Indian. So there are only two of us in this area since 1972.

Why am I here? To share with you some concerns about some sensitivities that Indians have about human genomic and botanical research. I want to say at the onset that I do not represent the Indian voice. I do not represent any tribe. I just want to convey the concerns that I've been dealing with since 1972. So it's a collective 25-year history that I bring to the table about the concerns that Indian people have had.

And why am I here? Well, I'll share that in some of the recommendations. What do I want? I'll share those in the recommendations I have.

The Indian concerns that have been conveyed to me I've presented to the Commissioners in three papers; one that I submitted to AAAS, the other two to international journals. And I know you have a lot to read, I trust the Commissioners have read those. And if you have, take out a pencil and paper and I'll give you a little quiz now. Just kidding.

Anyway, these are papers in which I do present the concerns. The concerns that Indians express are very similar to what other people have expressed about what is going on, but the concerns that Indian people have are very unique and their uniqueness is based on a background of a 500-year history with the U.S. government, a history that you can read for yourself, filled with many things called treaties and even patents. Over 500 treaties, agreements have been made with the U.S. government with Indian people, not a single one of which has been honored to the letter. So that has significant import on written documents, especially informed consent documents. Their uniqueness is very special because of their history, background that Indians have that other racial ethnics in this country do not have—reservations, language, culture, customs, and so forth.

The general concerns we have concern the research subjects, serving again as research subjects, and what is going on, which is very similar to other ethnic groups. But the unique concerns we have and the reason we have those are presented in that paper.

Now let's just talk about some of these.

Cloning, for example. Indians are very much against the idea of cloning because they feel this is totally in disregard to the things that we hold as spiritual and unique, the sanctity of life.

Patenting is another issue that Indians are very concerned about because, in my experience in talking with thousands of Indian people, I haven't met a single one who was for patenting. Not one. Both cloning and patenting. The idea of patenting is abhorrent to the Indian population because it connotes a lot of things about ownership. I think the U.S. government has itself declared that you cannot own another person; hence, slavery is a thing of the past. But Indians present these views in a different way because it's a type of ownership of one person when we patent that genetic material, especially when we patent these materials that are derived from cell lines.

These cell lines are technically just cell lines, but to Indian people they are immortalized cell lines; in other words, part of that person is still on the earth, part of that person is still in the laboratories of many institutions. So I've heard many Indian people express that they don't like the idea of grandmother being around where everybody can sample her and she doesn't know about it.

The idea of commercialization is abhorrent to Indian people, too, because the idea of making profit off of another person doesn't fit. Because the Indian perspective is you can't own the land, you can't own the air, and you certainly can't own each other or another part of that person. The idea that some of the tissue, part of that person may be immortalized in these cell lines upsets many people because many Indian tribes hold a strong belief that you can't be buried with a portion of you wandering around the earth; you must be buried whole. I understand Jewish people share that same feeling and belief.

We also have concerns about botanical research into our native plants and the indigenous knowledge that goes along with that.

The idea of conformed consent I think presents some problems, too, because in our past history, again referring back to the 500-plus treaties and agreements, Indians look at that and they say, "Well, we just can't believe what is written on the paper." Because, in our experience, this has not been our case where they've been honored. So what we put on paper, how can we really trust the White man?

There's an important lesson, too. It used to be that in Indian camps they used to talk about past histories and great battles, now the common story that they share is John Moore and the important lessons that we learned from the John Moore experience. And I trust that most of you know about John Moore. If you haven't, go ahead and read it because it certainly impacts on Indian people and their perceptions and their concerns about what is happening or potentially could happen.

The Indian response to what is going on: Since 1972, there hasn't been much response or interest, and then all of a sudden in 1991, when the Human Genome Diversity Project became newsworthy in the Indian country, there was a slight response; followed by 1993, when we had the first meeting with the Human Genome Diversity people in San Francisco, and then seven years later with more Indians, ten from the U.S. and ten from Canadian First Nations, but that meeting, held in January of this year, resulted in an impasse because of unclear goals.

The Human Genome Project, on the other hand, by NIH, has had an interesting history, benign perhaps on the onset, but you can see what happens now at the recent meeting we had in Virginia. You had the Five-Year Planning Committee, which I attended. There was a lot of discussion about what was going to happen in the next five years. I attended that session on diversity and SNP activities. And it came as no surprise, and Indians were expecting this, because from the Indian perspective, you look at NIH, what they have with personnel and technology, we, the Indian people, had reasoned that it wouldn't stop there with mapping and functional genomics. It was not a question of if they would turn to diversity studies, but when they would. And, certainly, this has happened.

So Indians are very concerned about what is happening with the NIH Human Genome Project and their diversity and SNP activities. It is very evident when you attended that meeting that the decision has already been made that they would go ahead and do diversity studies. The question I raised at that meeting is, did you bother to ask whether or not they wanted to be included in those studies? And the answer was, no.

There are many concerns that Indians have about the NIH and their activities and also with the Indian Health Service. There are many studies that are ongoing in both of these entities. These concerns have resulted in Indian country meetings, conferences, e-mails, so forth, that have resulted then in proclamations, declarations. Recently, the National Congress of American Indians, which represents about 150 tribes, in 1993 put out a proclamation absolutely condemning the Human Genome Diversity Project and related human genomic research.

The Indians have then evolved into their own communication network. Through conferences, they have developed, and many are developing, their own IRBs and their own Indian protocols. Noteworthy among these are the Akwesasne model, the Mohawk model, the Cherokees have developed their own, the Najavo, the Hopi, Shoshone-Banok, and numerous tribes in Montana. The reason for this is that they are now assuming more autonomy in what goes on in their own communities regarding human genomic and botanical research. It is a statement of self-determination.

With regard to the patenting issue, Indians have looked at what has happened in the South Pacific with the Solomon Islanders and the other people there and have taken a lesson from that. Some tribes have said we should declare Indian reservations, Indian communities as patent-free zones in response to the patenting issues.

I want to emphasize here that there's a new concept, and I heard it mentioned around here, about community and ownership. A lot of the tribes are now turning to this new concept of community ownership in the form of tribal DNA, that is, the tribe is now claiming that as their own property, which presents a lot of interesting things legally, a lot of legal issues. A new concept. In other words, how do we deal with certain people.

With other ethnic people, you don't have these kinds of issues, but with Indian people you certainly do. If you declare DNA as tribal property, then it becomes the property of that tribe. For instance, if there was some specific activity that I wanted to get into and my tribe says no, then I would respect that. The tribes are also incorporating these into their own IRBs and their protocols that you must consider this. That even though you want to do research, you must go through the tribes and get their own opinions, their own approval. And these documents have been very well thought out, so that even though an individual may want to get involved and the tribe says no, then no is the answer. So it's a new concept in this community, especially with the tribal DNA, if they claim ownership of that.

The present situation, where are we? Well, Indians are quietly forming to discuss these issues. The Montana meeting we had last year, we had over 1,200 people there, and they had a declaration, "The Heart of the People Declaration," which is in the documents I submitted to you. The first of August they are going to have another meeting in Northern California to continue these discussions. The researchers, on the other hand, are gearing up in their own way because of the activities that they want to pursue.

The issues we face now are not Indian, they are very human. The ELSI issues, certainly, but we also have sociological and spiritual issues involved here, social responsibility, as one speaker mentioned earlier.

Where are we headed? This is a more important question. What kind of legacy are we going to leave? This is important for the Human Genome Diversity Project. I think if you read the literature, you see that this was a public relations disaster. What kind of legacy has the Human Genome Diversity Project left? Well, you can read that and maybe determine that. It's status, where is it going? We don't know.

What about the Human Genome Project out of NIH? I conveyed this in my concerns to the Human Genome Project people—namely, Dr. Collins—and I asked him this question, and it's a very important one, because we stand on the threshold of something very, very unique and very, very significant in the history of this country: What kind of legacy are you going to leave? Are you going to contact these people? Are you going to respect then this is what their wish is? And only history will determine what kind of effort you make in that regard.

What about NIH? I've been talking with Peter Bennett and he is making concerted efforts to reach the Indian community. I had a meeting with him recently within the past week and had a long discussion. He is very sensitive about the concerns.

IHS, we're lucky to have Dr. Bill Freeman, who is very concerned about these issues and has continued his discussions with me and others, and has made serious attempts to communicate with the Indian community.

Now, as far as the pharmaceuticals, we don't know what kind of legacy will they leave.

Which brings us now to the issue at hand, what about the Commission, what kind of legacy will they leave? While I appreciate you inviting me to this Commission, there are other questions I have about the composition. As I read through the composition of the membership of the Commission, I see no Indians on the Commission. And I raise that question, why not? Do you have any plans to include Indian people on the Commission?

You have held meetings in various parts of the country. You delegated at one time to the CHPS people meetings to get information from specific groups and communities. You held meetings in Richmond and Honolulu, two, as a matter of fact, San Francisco, this is a CHPS meeting, CHPS meetings, San Francisco, Cleveland, Ohio, and Miami. You've held regional forums in several parts of the country. But Indians are curious to know whether or not you plan to have any forums in Indian country, whether or not this Commission is planning to have any forums in Indian country. If not, I think maybe this is something you should consider.

So we are down to some basic issues, and they have been raised around the table, and they are not scientific issues. They have issues that deal with trust, honesty, decency, and respect. Indians have a saying, this came from an old Shoshone medicine woman who was 108 years old, I asked her for some advice, and she said, "Son, wherever you go, walk and talk with decency, respect, and wisdom." So that's what we are looking at. Those are the values that we share.

The problems we have are not unique to Indian people but I think Indian people bring to the table some unique concerns that you should consider. Discussions, fine, the documents, the pamphlets, the booklet you publish are very nice and very attractive. But there is another challenge. While the discussion is important, there is a key word here that I think we should all consider. That after all the study and all the recommendations, the key word starts with an "I" and has to do with implementation. So that is a challenge that we bring to the table from the Indian people is talk is not enough. We want to see what is some implementation of some things brought to this table.

I'll cut my remarks very briefly because I want to get through it very quickly. But I think there are some important issues here that maybe you have not considered, or maybe you have considered, that Indian people want to convey to you. Again, these are not my own comments, my own personal comments or feeling about it, I want to emphasize that these are comments that we bring from the Indian people. Thank you.

DR. SHAPIRO: Thank you very much for your thoughtful comments and, once again, thank you for being here.

Let me now turn to questions from Commissioners, either for Frank or Allen, as the case may be.


DR. MIIKE: For the last speaker. The issues that you raise don't seem particularly pointed at genetic research but just their relationship between what Indian peoples have suffered in terms of the American government. I thought you were starting off by saying that they want no participation. But it sounded more at the end like it was a self-determination issue and control over those kinds of things, if I'm correct on that.


DR. MIIKE: I'm more interested in you as a geneticist and your dealing with Indian peoples. How do you handle all of the issues that you have raised from your own perspective as a scientist working with your people?

DR. DUKEPOO: I've been asked that question many, many times. Prior to about three years ago, I was busy in a 30-year project in my own research on albinism in Indian people, albinism in-breeding. I was on the verge of doing some collaborative research to map the albino gene with some animal model studies.

So this issue came up about human genomic research and I made a decision, and a very important one. What did I do? I put a moratorium on my own research. Why? The answer is easy, I was an Indian long before I was a scientist. And since there are only two of us in the country, I felt my allegiance to my Indian people. I couldn't conduct and continue my research with these issues at hand, so I had to make that decision about what direction I'm going to go. And Indian people need my help.

So this is my role now, a more important and probably a much more exciting role than just sitting there mapping genes and constructing pedigrees, is getting into discussions like this, because Indian people have turned to me to do a lot of interpreting of what's going on here. We don't have the person power to deal with these issues. But Indians are very glad for this, that the Indians are becoming much more aware and concerned about what is happening in genetic research.

As I see it—when people ask me where I stand, I say, I've made some decisions about it. But I think it is important to know, and I want to share this with the Commissioners and the public, too, that as I see Indian country, if you can imagine a bell curve, you have three areas of the curve that we look at. On both extremes are populations in Indian country.

On one extreme, you have a population that says no, absolutely not. The NCAI, with their 150 Indian tribes, says no, absolutely not, we don't want to deal with any of this kind of research. So the answer in dealing with that population is very simple, again getting back to respect, the answer is leave them alone.

On the other hand, you may have a small segment of the population of Indian people that say yes, we want to do this research because there are some things in it that we would like to see. Certainly, the Pimas have been involved in this and the Cherokees, for numerous reasons. You can't throw out the whole thing because some Indians do see some beneficial aspects of this kind of research. Take, for instance, the whole idea of the diabetic issue. That has been enhanced by genomic technology. In other words, now insulin is available through genomic technologies. Indians understand this.

So there are certain Indian tribes that do want to get involved for various reasons that are biomedical and perhaps biogenetic. And the answer for those is, if you're going to do it, let's do it right. In other words, you have your IRBs, the Human Genome Diversity Project people came out with their MEP, the Model Ethical Protocol, which I think is very impressive, and that's maybe the way research should be done. But Indians are now devising their own IRBs and their own ethics protocols that I think should be respected and looked at. And I think that's going to be a big challenge to Western scientists. The reaction already has been very interesting and not unexpected. They are saying, "Why? Why do we have to do this? We never had to do this in the past. I just don't understand why we have to do this." Well, that's the very point—times are changing. We are taking control of what goes on in our own communities.

But the larger population in that curve that I described is probably what describes the population out here, that many of you don't know enough about the issue to make a decision one way or another. So that it is incumbent upon the agencies and institutions to look for innovative ways to communicate what's going on in your different agencies, your different organizations. So the key here is education.

My own response is I'm not out to tell them what to do or which direction to go. I want to give them enough information so that each tribal entity can make a decision that they can live with. Ultimately, it gets down to the tribal level and you have to deal with tribes specifically and perhaps individually on each project.


MS. BACKLAR: I'm hoping that we have a few minutes while you and Allen Buchanan are still here, because you bring up something that is extremely important for our deliberations—and we are, by the way, very honored that you are here and it is very important that we listen to your rebuke as well as the information that you are giving us—and that is the issue of community.

You appear to come from a well-delineated community. But even in a remark that you made to us about the Indian perception of how they felt about human cloning, you said something that was very clear is that there was one perspective on this. But we actually received, while we were writing our report, some communication from another Indian community that actually spoke about how human cloning might be beneficial for a group of people who may not be reproducing as much as they would wish to be and to continue their presence on this earth.

So I would like to ask you both to maybe give us some insight into this issue of how we deal with community. What does it really mean? Is it something that we can delineate, or is it something that is going to be so amorphous that we're not going to be able to get answers? Because even in the community you delineate, you also indicate that there are individuals or groups who don't have the same agreement.

Dr. Buchanan and I were speaking before we started, and I'm very interested in the possibility that the communities may end up being disease communities. I don't know if that is something that you could discuss about this with us.

DR. DUKEPOO: Well, there will be a variance in response from the different Indian communities. What they say and what they actually do remains to be seen whether they want to get into cloning or not.

MS. BACKLAR: But what about individuals? Can you really speak for your whole community?

DR. DUKEPOO: They have discussed this and there are discussions now ensuing saying, if we determine as a tribe that this is something we don't want to do, then it should not be done. And all those investigations that are done illegally against the tribal wishes are null and void. That is not research. And that gets back to this whole thing of respect.


DR. BUCHANAN: Could I just make a comment? Because I think we're kind of on the same wavelength here. I take it the question you're asking is, is there a discussion of which things should be in the control of tribes when individuals dissent, and which things should not? To say, well, the tribe has now decided so an individual may not choose to participate, and if he chooses to that will be overridden, is already to make assumptions which some people might contest. I was struck by something Frank said earlier, that, in general, Indian people don't have an idea of property in biological material. But there is another way to put this, and that is they have a very definite idea of property in biological material; namely, a collective property right on the part of the tribe. So it's not a question of whether there is a property right in biological materials, the question is whether it's an individual property right or a collective property right. That's just a different way to put the issue.

But I think it raises this issue; that is, of course, if there are tribal governments, they have a proper domain of jurisdiction over many different decisions, but the question is which ones when it comes to the uses of biological materials or other kinds of research participation? And who decides that? Well, you might say that maybe the tribe decides it. But then what are the processes by which the tribes decides what the proper jurisdiction of the tribe is.

And questions about representation and all that kind of thing come up at that point.

I'm sorry, I spoke out of turn. I'm a political philosopher by training, and so this is the way I tend to look at things.

DR. SHAPIRO: That's very helpful.


MS. CHARO: Following on this, actually. Dr. Dukepoo, I'm interested in understanding how much you believe your comments can be generalized to other communities in the United States that are not, in fact, organized as independent political entities? Much of what you've described in terms of decisionmaking seems potentially quite closely linked to the fact that you exist as a series of independent nations with governments that are subject to their own kinds of rules and constitutions and charters, et cetera, and that are recognized on a variety of topics as being sovereign over their citizens, however they define their citizenship, through enrollment, et cetera.

Those seem to me to be distinguishing characteristics. If we were to look, instead, at the community of people who are Ashkenazi Jewish or people who are all first degree relatives of somebody with breast cancer, which are two other kinds of communities that we talk about, how generalizable do you think your experience is or how much do you think it is linked really to the political agenda of the decisionmaking?

DR. BUCHANAN: Who is that directed to? I hope it was directed to you.

MS. CHARO: It was.

DR. DUKEPOO: Well, I hope, and this is good because Indians may serve as a model because of their uniqueness, and whatever we learn from that experience I think would be very beneficial to other communities. Now, the Ashkenazi Jews, for example, members of that population have said, hey, we have similar sentiments and concerns about people in our community, about stigmatization and so forth.

So, it's gradually emerging. This is going to be very interesting to keep your eye on to see how this emerges. The question of how are you going to deal with Indian people is going to set the precedence of what happens in the future with other communities. And it could be that other communities will start to bind together and voice their concerns collectively. We haven't heard from the Hispanics, the Blacks are expressing their views, we don't know too much about the Asian Pacific Islanders. So maybe this might be the stimulus for the other ethnic or community entities to get together to express their concerns. And they should be written. I think we've got to see what they're thinking.

On the other hand, it is incumbent not only for the other populations to express their opinions, but it is also very important for the project designers and entities such as this to put down their expressions on paper so that we know exactly where you are. It comes down to, if you're going to come to the table, let's do it openly; here's what we have to offer, here's what they have to offer, and let's sit down and discuss it. These things about decency, respect, honesty, trust are all a part of this.

DR. SHAPIRO: A number of other Commissioners want to speak; however, I'm conscious of your plane schedules and I don't know if we've run out of time or not. You'll have to advise me. If you have, then we'll just thank you and we'll continue our discussion and perhaps communicate in other ways. So, Allen, I know, but if you both have to go, I certain —

DR. DUKEPOO: It's been my pleasure to be here and I appreciate the time. And we've only scratched the surface. And I want to leave on a note that I'm really hopeful that things can be worked out and I'm really concerned about the legacy that this Commission will leave as well as I am for the other entities that exist out there. What kind of history will you leave? Will it be a continuation of the 500-year history we've experienced, or will it be something new? And this is the something new that I'm really excited about because it could be sociological, it could be a big sociological breakthrough. How do scientists interact with their research communities and their research people, that's the question. And I think that's what we have on the table.

And I want to leave also with this whole thing of where I stand. I want to help you. So I want to continue the dialogue. We've only scratched the surface. If you're up to it, we can continue it some other form or fashion. I'll be glad to comment on some of the reports you made. You have my articles. You're free to cite those as you write up your papers. So let's continue the dialogue and let's continue the discussion.

I would urge you to maybe invite more Indian people, or actually go out to Indian country and hold a meeting in Indian country. A good example would be in Montana because they are very much aware of this. And I think that's part of your education. It works both ways; we can educate you, but you need to educate us. And I think that would be a way to do it is go out to the people and demonstrate your concern about what is happening in Indian country, and that would reflect on other ethnic populations as well. Let's set a good role model, a good precedent.