PANEL PARTICIPANTS

Jerome Cybulski, Archaeological Survey of Canada; Physical Anthropology Program, Canadian Museum of Civilization. Email: jerome.cybulski@civilization.ca

Carrie Dan, Independent archaeologist. Email: c.dan@live.com

Sheila Greer, Champagne and Aishihik First Nations Heritage Department. Email: sgreer@cafn.ca

Debra Harry, Indigenous Peoples Council on Biocolonialism. Email: dharry@ipcb.org

M. Anne Katzenberg, Department of Archaeology, University of Calgary. Email: katzenbe@ucalgary.ca

Daryl Pullman, Faculty of Medicine, Memorial University of Newfoundland. Email: dpullman@mun.ca

Dongya Yang, Department of Archaeology, Simon Fraser University. Email: donyang@sfu.ca

TRANSCRIPT OF THE PANEL DISCUSSION

The panel began with an acknowledgment that we were assembled in the traditional territory of the Blood Nation. The panelists were then introduced and, in alphabetical order, gave their initial opening comments.

Jerry Cybulski: As I understand it, the National Geographic Society Genographic Project is a collaborative effort with IBM and the Waitt Family Foundation charity to attempt to resolve genetic issues concerning the origins of human diversity. It focuses specifically on modern populations and their DNA makeup to investigate questions of antiquity that have otherwise long been the domain of paleoanthropology and archaeology. Some have embraced the project or, at least, the concept, while others have been wary. Some Native Americans in particular have been opposed to the Genographic Project and similar studies of genetic testing. The reasons vary. Among them, there is a perception that this project is simply an extension of nineteenth-century colonialist science. As well, mtDNA [mitochondrial DNA] theories of migration have, on occasion, rested on the reuse of blood samples from Native Americans who had donated for other research purposes.Footnote ¹ This has made people suspicious of sampling.

I am not here to support or dismiss the Genographic Project. My opening remarks are more or less a personnel odyssey, which I hope would give perspective to the usefulness of cooperation and collaboration for DNA research, ancient and modern. I work as a physical anthropologist or, as more fashionably termed today, a biological anthropologist. I'm one of those biological types who studies bones, mostly old but sometimes recent. Some identify the work as skeletal biology or bioarchaeology.

The old bones with which I work are principally those of the ancestors of Native Americans or, as they are known in Canada, First Nations. Although I am employed by a museum, I am not only concerned with museum collections. I spend a fair bit of time doing field anthropology and mortuary archaeology. I do this not in the presumptive luxury of academic isolation (even in the field), but in the undeniable luxury of working with descendent communities.

Almost all of the research I have done has been in cooperation and/or collaboration with First Nations. My introduction to human osteology came as a graduate student assistant at the University of Buffalo, measuring the bones of Seneca Indian ancestors who were being moved from soon to be flooded cemeteries near the banks of the Allegheny River in New York State.Footnote ² The late great Johnny Cash wrote a song about the background of that project, “As Long as the Grass Shall Grow.”Footnote ³

Later my work took me to the coast of British Columbia, where I assisted with major burial recovery and reburial projects at Hesquiat Harbour, Owikeno Lake, the Nisga'a village of Laxgalts'ap (Greenville), and Quatsino Sound on Vancouver Island's northwest coast.Footnote ⁴ In between and afterward, my growing experience with skeletal biology, mummified human remains, repatriation, and reburial helped me to assist the Cowichan Tribes, Chemainus, Heiltsuk and Nuxalk, the First Nations Summit Task Group of British Columbia, and, again, some 10 years later, the Village Government of Laxgalts'ap.

Most of the associated research I did involved skeletal biology as it could then be applied for study of biological relationships among different local populations and language groups, ancestral–descendent relationships, studies of health and disease, social organization and socioeconomics, warfare, and studies in adaptation and ecology.Footnote ⁵ I had also done some work in the Interior of British Columbia or, as it is also known, the Canadian Plateau. It was in this century, however, that any interest I may have had in the Plateau, both northern and southern, according to the Handbook of the North American Indians, became more directed. As a consequence, without more than a passing academic interest in the big picture and Eve herself,Footnote ⁶ I became involved in mitochondrial DNA research.

As part of this new phase of Plateau research in adaptation and ecology, I studied the morphology and taphonomy of two skeletons that had been salvage-excavated near China Lake, B.C. in 1982 by archaeologists affiliated with Simon Fraser University.Footnote ⁷ One of the skeletons had been dated at 5000 radiocarbon years, and there was every reason to believe that the two were buried together or within a short time of each other's deaths. In 1982, and for at least 20 years thereafter, the skeletons were the second oldest known from the interior of British Columbia, next to an 8400-year-old skeleton found at Gore Creek in 1975.Footnote ⁸

The two China Lake skeletons shared morphology that appeared more than coincidental.Footnote ⁹ Relative to other Interior remains with which I was familiar, the two identified as male by me and all who had studied them before were short of stature and uniquely gracile. Surprisingly, they also shared a rare anomaly of the humerus or upper arm bone known as a supratrochlear spur. The question I then had was, “Could they be brothers, or even twins?” The potential answer, of course, is that in 2002 we now had the technology to prove or disprove the hypothesis—aDNA testing.

Like many institutions today that house archaeological human remains, Simon Fraser University's Department of Archaeology has a policy in place to ensure that any destructive testing meets with the approval of culturally relevant descendent communities. Accordingly, I contacted the community of Canoe Creek for consultation. Our initial meeting in October, 2002, rapidly developed into a marvelous collaboration, which is now in its fourth year and continuing. It has included study of the China Lake skeletons, the location, excavation, and identification of a second 5000-year-old burial site about 25 km east-southeast of China Lake; initial study and documentation of a potentially ancient burial site closer to China Lake; and, of course, aDNA testing. We have also gone one step further. With informed consent, people in the community have agreed to undergo mtDNA testing for studies of affiliation with the ancient past.

And what of the China Lake results? Our essentially innocent initial query on whether the two individuals were related by family has worked out positively, but in an unexpected way that has catapulted us into the big picture fray. The two young men share mtDNA haplogroup M, a lineage different from the five founding lineages known so far for Native North Americans.Footnote ¹⁰ We are currently completing further ancient DNA testing in collaboration with Canoe Creek as well as other Shuswap Nations who have expressed interest in this research and the search for ancient biological roots and population movements in British Columbia.Footnote ¹¹

Carrie Dan: I am from the Kamloops Indian Band and was invited here today to share information on some of the different projects that I've been involved with regarding the issue of DNA studies in Secwepemc Territory. As Jerry stated, he's been working with the Canoe Creek Indian Band. As far as other Shuswap communities, we've never been involved in any such research, and there's been quite the controversy in the communities. I work as an archaeologist, and I have been put in a unique situation by being a community member and being involved with this type of research. I have found that after fully explaining our project to community members, they have come forward and are now sharing their information with us. This is all really relatively new. Secwepemc people were always getting skeletal remains coming back to our community through lab developments and just accidental findings. In the past, throughout all these different repatriations that we've had, we've never done any testing on them; they've always just been re-interred, and we've never collected any of that valuable information.

So in the last year, four different sets of human remains have come back, and the communities have allowed us to do the DNA research and do the radiocarbon dating, allowing us to begin to build a genetic profile of these ancient human remains that we're finding. I'm working with the modern people, taking samples of the population now and trying to hook them up with the ancient ones from the past. It's never been done in our territory. I know that it's been done at Palmdale (a site in the Santa Clarita Valley of California) and other places in North America. This was very interesting for me to be involved in this type of project because I am a descendant, but I'm also the researcher, and I'm bridging that gap between the researchers and the participants. Hopefully we'll get some valuable information and learn more about how the Secwepemc people actually populated the Interior.

Sheila Greer: I'm an anthropologist who works for the Yukon-based Champagne and Aishihik First Nations (CAFN). While I have a strong archaeology background, my responsibilities for CAFN are best characterized as applied anthropology. Today many Yukon First Nations have formal heritage programs, with full-time staff who work in the area of heritage and deal with everything from archaeology, traditional knowledge studies, place name studies, and similar concerns; my work takes place within such a context.

The comments I offer on the implications of the Genographic Project come from the perspective of a Canadian First Nation that is involved in two ancient mitochondrial DNA studies. The studies relate to human remains that were found melting out of a glacier in Tatshenshini-Alsek Park in far northwestern British Columbia. The discovery, which was made in 1999, is referred to as Kwädày Dän Ts'ìnchi, meaning the “Long Ago Person Found.”Footnote ¹² The discovery is jointly managed by the First Nation (CAFN) and the Province of British Columbia.

Mitochondrial DNA studies to identify the haplotype of Kwädày Dän Ts'ìnchi have been completed.Footnote ¹³ In addition to the studies on the actual human remains (i.e., the “Long Ago Person Found”), the First Nation initiated a second DNA study, referred to as the Community DNA study, to see if they could find living relatives of Kwädày Dän Ts'ìnchi.Footnote ¹⁴ This study was developed to learn who should have responsibility for taking care of the remains and the associated belongings or artifacts, as archaeologists would refer to them. Relatives need to be identified in order to know who should have responsibility for the deceased, according to their traditions. Similar traditions are held by the other First Nations and tribes in the surrounding regions of the southern Yukon, northern British Columbia, and southeast Alaska. Individuals affiliated with various different tribes and First Nations based across the southern Yukon and adjacent southeast Alaska voluntarily chose to participate in the community DNA study. The study is not yet completed; it ran into snags and lack of money, but it is certainly still alive.

So the obvious point I make is that Indigenous peoples, as well as the governments that represent them collectively, recognize that DNA research has potential to answer questions of concern, to help them solve real problems they are dealing with. Despite this recognition, the Champagne and Aishihik First Nations government is not recommending that its citizens participate in the Genographic Project that we are discussing here today. I have been advised that the chief of the First Nation has received an invitation to personally participate in the study. I believe that is how the Genographic Project has moved out to the First Nations, by the way of invitations to the chief or the tribal government. Champagne and Aishihik First Nations have chosen not to bring notice of the project to their citizens, nor does the chief intend to become personally involved by providing a sample.

This First Nations' experience with the Kwädày Dän Ts'ìnchi Community DNA study has made the indigenous government very aware that DNA studies represent deep and complex waters, which indigenous peoples must approach and negotiate with caution. Moreover, we believe that research efforts such as the Genographic Project should adhere to the OCAP principles as articulated by the National Aboriginal Health Organization (NAHO).Footnote ¹⁵ Arising out of the context of the First Nations health studies, OCAP is an acronym that stands for ownership, control, access, and possession—as in who possesses the data, samples, and the results and processes of research.

Although the OCAP principles had not been articulated at the time our study was initiated, our experience tells us that they are needed for DNA studies for many reasons. To help convey the importance of this approach, I remind the audience that indigenous societies are collectivist ones, where there really are no individuals, but rather citizens connected through a complex web of very strong social relationships. What one does—such as participate in a DNA study—affects many. In the case of the Kwädày Dän Ts'ìnchi Community DNA study, we now realize that if one living relative is detected among the study participants, in reality we have found many because of the strength and vibrancy of those social relationships.

Moreover, a significant percentage of population in indigenous communities, including some that did participate in our study, face daily challenges that are the aftereffects of the severe and misguided race-based social policies of Canada's past, such as the residential school experience, the practice of adopting children outside of their culture, and other similar colonialist practises. As anyone who works with or for native communities or governments knows, it's a constant struggle, an ongoing effort, for some of these individuals to keep their lives on track. They're easily thrown into a tailspin that could be precipitated by what might happen if, as the Genographic Project literature notes, the outcome of assembled genetic information contradicts the community's traditional understanding of its people's past.

While the Kwädày Dän Ts'ìnchi Community DNA study did not have the benefit of the OCAP guidelines as a framework when it began, we are fortunate that the scale of our study, is small enough that we can anticipate and explore beforehand the potential impact of the different study outcomes. Before we release our study results, we will be seriously considering the impact both on the individuals who participated in the study as well as the potential impact on their communities.

Champagne and Aishihik First Nations government has active and strong relationships with the various indigenous governments that represent the range of individuals that participated in the study. These linkages are important as it means that our project has real social controls, that the governments that represent those who will be affected by the results of the study will be involved in both the interpretation of the results, as well as the decision making regarding the manner in which the results are publicly presented. By way of contrast, in the Genographic Project there are really no such social controls. The individuals who benefit from the study (i.e., the scientists involved) are not going to be the ones who are paying the potentially negative social costs of the study outcomes, whatever they may be.

I cannot overstate the importance of having some kind of social control in place on these kinds of studies. And for those who would say that politics, even indigenous politics, should not interfere in science, I would state that you are naive if you think that any science occurs outside of a political context.

Debra Harry: I'm very happy to be here and honored to have been asked to participate in the panel this afternoon. I also would like to acknowledge the traditional owners of this land. It's always good to be in other indigenous peoples' traditional territories, and I hope that I have a chance to meet some of you and talk more directly about a project that affects many of us.

My comments are about the Genographic Project [GP], and I want to share some of the work and critical analysis that my organization has done, along with a network of indigenous organizations worldwide, as we've taken a critical look at this project. As you can see from the GP web site, this is research about human history and human migrations, and they have some preconceived maps to illustrate their theories. They hope the genetic research will reinforce the theoretical frameworks they have already developed.

The Genographic Project essentially says their genetic analysis will tell us who we are, where we came from, who we are related to, and what the general timeframe is for that kind of information. What they don't tell us is that their research can only be speculative, that the results are inclusive, and they cannot be validated. This is due to the very nature of genetic analysis. There are a lot of problems with trying to come to any kind of conclusive outcomes from this research because they're studying DNA, and the only conclusive use of DNA is to exonerate a suspect. Other than that, and particularly in the field of anthropological genetic research where a great deal of time and many generations have passed, the results will only be, to a great extent, speculation.

With ancient DNA the results get even more murky. For example, a thousand years represents roughly 33 generations. Since the study of genetics is basically a study of lineage, in order to do any comparative work, you'd have to study one person's DNA and compare it to a blood relative. If you are studying mitochondria or Y chromosomes, all you're studying in reality is the paternal or maternal lineage. If we go back four generations—you've got eight relatives there, but if you're studying the Y chromosome, you're studying only one-eighth of that lineage and leaving out seven other relatives at that generational level. So, just by virtue of numbers alone, this kind of research cannot be conclusive in any manner. And yet because it carries the weight of science, it has the potential to have tremendous impact on the lives of indigenous peoples.

If you look at the Genographic Project's own informed consent statement, there's specific language in there that says, “It's possible that some of the findings that result from this study may contradict an oral, written, or other tradition held by you or members of your group.” That is a problem because indigenous peoples, by and large, already have knowledge about who they are, where they came from, and with whom they are related. Then you have a research project such as the GP, bearing the weight of science, saying, well, we think that our data are going to tell us more or it's going to contradict your understanding of who you are. This amounts to the discounting of indigenous knowledge in the name of science, yet the scientific findings are at best inconclusive. This conflict is underscored in a quote from Aroha Mead, a Maori activist and academic: “The human story might be written in genes from a scientific point of view, but the human story from a cultural point of view is actually written in our culture; it's in our language, it's in our art, it's in our dance and in our tradition.”

A big problem with this type of genetic research is that it is based on the notion that we have homogeneous gene pools, and that we have not mixed with other populations throughout all of human history. There is also an assumption that we are fast disappearing or assimilating, so they had better hurry and get our DNA before we disappear. This thinking underscored the Human Genome Diversity Project of the 1990s, and now similarly the GP. Many indigenous peoples are insulted by the insinuation that it is more important to collect our DNA rather than protect the rights and well-being of the people themselves.

One of the problems that we have is that any findings that come out of the scientific community can be used politically against us. If we have genetic scientists saying their research suggests that certain Indigenous peoples really are recent immigrants from somewhere else, this denies those peoples' claim to their own indigeneity. Well, this is a problem because such speculative findings could definitely have serious political implications for that particular group. Indigenous rights are based on the notion of aboriginality and on being the original peoples and occupiers of territories. So there are very real and serious implications for the human and political rights of indigenous peoples.

An indigenous person from Thailand spoke to this concern when he said, “Lawyers may use the genetic results to argue that Aboriginal people have not always been in Australia and do not have any special rights there.” Or, “In [Thailand], we already have our own creation story, and if the scientists show otherwise, the government many finally have what they need to evict us from our land.”

When we heard about the Genographic Project, it seemed it was the Human Genome Diversity Project [HGDP] reincarnated. These projects share some of the same leadership. Luca Cavalli-Sforza, founder of the Human Genome Diversity Project, sits on the international board for the Genographic Project, and Spencer Wells is his protégé. The project centers on some of the same notions of human history and human migrations. The GP differentiates themselves from the HGDP by stating they not going to do medical research or patent DNA. But, this was also true of the HGDP. While the project itself may not seek patents, there is no guarantee that secondary users will not commercialize. The GP says they will also not immortalize DNA samples. However, even without immortalization, the genetic samples are going to be available for a very long time.

According to GP protocol, researchers base their ethics on individual informed consent and at first expected to achieve informed consent in 20 minutes.Footnote ¹⁶ But in a review of the Human Genome Diversity Project, the National Research Council said that “Consent alone cannot justify research on populations that will not be able to benefit because such research violates basic principles of social justice and equality. Research subjects can make a gift to researchers or humanity, but the validity of such a gift in the context of studying genetic diversity, especially for isolated populations, is too problematic to provide the sole justification for research.”

This suggests that the standard of individual informed consent as it stands is not enough to protect the rights and interests of unique populations existing under varying conditions of colonization and other social, cultural, political, and economic stress. Many of these populations have been isolated and don't necessarily have all of the information they need to be able to give their free, prior, and informed consent, an international human rights standard now entrenched in international human rights instruments such as the UN Declaration on the Rights of Indigenous Peoples.

The HGDP was so ethically problematic that it was not able to secure federal funding for programmatic support. It also was unsuccessful in its bid to gain support from UNESCO's International Bioethics Commission. In other words, the HGDP failed to garner support nationally and internationally from their peers.

The Genographic Project has failed to consult broadly with indigenous peoples at the design stages or for any reason other than to obtain consent for sampling. There seems to be a presumption of open access, without any reciprocal obligation for meaningful consultation before initiating a project that affects indigenous peoples in such a profound way. An indigenous gentleman from Thailand said, “They just pick us from their office, somewhere overseas. It sounds like they're talking about picking vegetables in the market. Just for your information, I think of myself and my people as humans who have no less dignity than the Chinese, Indians, or anyone.”

In the end, if there's no consultation, there can be no agreement. We're expected to serve simply as passive pincushions for the GP, as Jonathan Marks mentions in his book.Footnote ¹⁷ This kind of research has all kinds of problems, and 10 minutes is really not enough time to discuss these issues in any depth. The GP represents a top-down, outside-in approach to research in which indigenous peoples are expected to serve simply as objects of research. Indigenous peoples are expected to bear all of the risks with little or no benefit. This project raises the risks associated with the alienation of genetic materials, and also the alienation of traditional knowledge because a part of the project is to also collect cultural data in the field.

This project also reifies race. Certainly for indigenous peoples, tribal or indigenous identity is not based on genetics, but is a cultural, political, and spiritual construct.

We often see widespread secondary uses of bodily samples, and now there are plenty of cases of this, including an active court case where the Havasupai Tribe is suing Arizona State University for allowing secondary uses of their blood samples without their consent.

In May of this year we presented the Genographic Project with a petition with 868 signatures from Indigenous peoples, indigenous organizations, and others that asked the National Geographic Society to put a halt to the Genographic Project until all of the ethical issues for Indigenous peoples could be addressed. Dr. Wells minimized the weight of the petition by saying that there are an estimated three million Indigenous peoples in the world today, so 868 signatures is of little significance. On the other hand, 8000 indigenous peoples have already participated.Footnote ¹⁸

The problem here is that he's basically belittling the signatories to this petition who represent many indigenous organizations, and indigenous leaders from all over the world. Many of them represent regional organizations of Indigenous peoples. Many of them represent their nations at the international level. So if you take a critical look at that list of signatures to the petition, you would see that it represents quite a significant voice of Indigenous peoples. And yet he's countering that by saying that the project has been able to convince 8000 people to give DNA out in the field.

A number of indigenous leaders from throughout the world met with the Genographic Project at a meeting organized by Cultural SurvivalFootnote ¹⁹ in May 2006. Following a presentation and Q&A session, the indigenous peoples present were unconvinced and iterated their demand that the project be halted immediately. This meeting also coincided with the meeting of the United Nations Permanent Forum on Indigenous Issues (UNPFII), which issued a statement recommending that the World Health Organization and the UN Human Rights Council investigate the objectives of the Genographic Project and that the Project “should be immediately suspended and report to indigenous peoples on the free, prior and informed consent of indigenous peoples in all the communities where activities are conducted and planned.”Footnote ²⁰ The Genographic Project has not yet implemented the UNPFII recommendation.

One of the calls by indigenous peoples is for transparency as to where the GP intends to collect DNA, but this has been ignored. In June (2006) the Genographic Project took cheek swabs from Alaska Natives without local IRB [institutional review board] approval. The Alaska Area Institutional Review Board demanded the immediate return of those samples from the University of Pennsylvania and issued a very strong letter of condemnation for the Genographic Project's conduct in that situation. This led to an internal review of the project's regional protocols and some revisions in fieldwork protocols.Footnote ²¹ As a result, the GP has come to almost a complete standstill in North America, but the work seems unhindered in other parts of the world. These ongoing collections of DNA should be viewed with skepticism because the North American protocol is supposed to serve as the model and standard for the other international regional protocols.

Cultural Survival joined the international indigenous rights movement in calling for a moratorium and asking the National Geographic Society to suspend the Genographic Project until Indigenous peoples' concerns are fully considered and addressed. They also say, “from an indigenous perspective it is not sufficient that NGS act in a ‘scientifically and ethically sound manner.’ NGS also must act in a manner that respects indigenous peoples of current, past, and future generations. You must listen to their leaders at all levels, involve their representatives from the beginning in all stages of decision-making processes, and treat their concerns as seriously as you treat those of science, governments, and your funders.”Footnote ²²

Clearly, we are dealing with a project that's determined to move forward, despite the opposition, and as fast as they can. We saw this same kind of urgency with the Human Genome Diversity Project. We're running into a situation with the Genographic Project where everything that we've done to converse with them, including our request for full transparency in their activities, has by and large fallen on deaf ears. They are not listening, and they are not reacting to our calls for action.

So we must look for allies. We are looking for support to help us hold this project to some level of ethical and social responsibility. This may require UN oversight or institutional responsibility at the University of Pennsylvania, home of the Genographic Project's North American branch. Perhaps it may require litigation, public pressure, or direct action. In the meantime we encourage indigenous communities to evaluate this project through their own cultural lenses. It is critical to understand the science of genetics behind this project, but indigenous peoples also must look at it through their own cultural frameworks.

Anne Katzenberg: My perspective is quite, but not entirely, different from some of the others you have heard. Like Jerry Cybulski, I'm a physical anthropologist, nowadays called a biological anthropologist, who specializes in the study of skeletal remains, to try to learn as much about people as we possibly can. Some of my work is destructive in that I analyze the collagen preserved in bones and teeth and try to reconstruct diet, to look at people's past dietary adaptations and how that had an impact on health, social structure, and various aspects of life.

I confess at the outset, I knew nothing about the Genographic Project when I was asked to participate, and I suggested several other names, some of whom are here, of people who were more directly involved in genetic research than I. I'm not directly involved in genetic research except in one project in which I participated that includes a study of both ancient and modern DNA in central Asians.

So why am I here? I teach human evolution. I teach human variation. When I was a student, I took a course called “Races of Man,” which is doubly politically incorrect these days, but it was a course on human variation. There's been a very longstanding question in anthropology about the relationships of different populations in the past. People are looking at genetic studies in modern populations to try to find populations that have a greater tendency to marry within their own group. While people have always moved around and interacted with neighboring groups, today with rapid transportation, people are much more likely to marry someone outside their own group. There's a longstanding question about migration patterns and population interactions, all the way back before Homo erectus. My perspective is a bigger perspective as a human biologist compared to that of an archaeologist, which I'm not, though I am in a department of archaeology.

The technology for looking at population relationships, migrations, and interactions has changed quite markedly, particularly since 1980 with the advent of the polymerase chain reaction and the ability to actually sequence DNA. Basically—and some of my colleagues have said the same thing—the Genographic Project is a very old question for our discipline and in human studies in general, but simply using much newer technology than has been used in the past.

For example, in the 1920s some people began to understand the A, B, O blood group system. Subsequently a lot of other blood group studies were done, and other blood group systems became known. Blood group studies done on peoples of the world were used to make maps like the one you saw from the Genographic Project, though not quite so detailed. These were looking at genetic variation. Blood group systems genetics are understood in terms of the mode of inheritance and how people are interrelated to one another through language and culture, from an anthropological perspective, but the problem was always that while some of these migrations happened many thousands of years ago, we're looking at tissue samples from modern peoples.

So the time depth was addressed through traits in dentition and the skeleton that are believed to have a genetic basis, but we don't necessarily understand the exact mode of inheritance, nor are we positive about the magnitude of the environmental component and other factors. So those results were proxies for genetic relationships in the past, and we continue to do studies looking at nonmetric features, such as extra cusps on molars, extra roots, and skeletal traits such as extra foramina, to imply genetic relationships and bridge the gap between modern and ancient people.

Genetic studies and the advances that have allowed the sequencing of the genome have been applied to many, many species in biology. If you peruse or Google search terms like “genome sequencing” or “mitochondrial DNA sequencing,” many, many species show up. The question is often one of genetic relationships, within those different species and relationships and major taxonomic categories such as those done at the taxonomic level of the genus. Sequencing of the mitochondrial genomes provides information at a higher population level, rather than looking at individual variation that we see in the genetic material of a nucleus that determines ancestral relationships within individuals.

I should add, I have had nothing to do with the Genographic Project, although I was aware of the earlier Human Genome Diversity Project. So I have neither advocated for or against it, as Dr. Cybulski mentioned as well. From what I've gleaned from their web site, the project is proposing to look at mitochondrial DNA as a population level genetic marker and also at Y-chromosome data so that we get information about female inheritance plus male inheritance. As I said, mitochondrial DNA studies have been carried out on a huge number of different species of animals for various reasons. Some of the reasons had to do with wildlife conservation or management, but the point is that this is not something that's just been done in humans but by biologists in a very large way, looking at evolutionary questions.

To me, it seems natural to now look at humans. If we want to look at evolution of species, we want to look at evolution in many different species, and that would include our own. Y-chromosome studies, from what I can tell, seem to be more focused on humans than on other species of animals, and I'm not sure why that is. The bottom line from this perspective is that biologists, and human biologists by extension, are interested in evolutionary questions, and these studies are a very sophisticated method to get at these questions.

I also looked at some of the web sites of people who are concerned about the Genographic Project because my own naive perspective as a scientist was, “This is really exciting and fascinating—why would anyone object to it?” Obviously I'm learning a lot today, and I learned a lot through my research of these web sites. I chose what I thought was one of the more extreme critiques on the web site of the Indigenous Peoples Council on Biocolonialism, which was, if you characterize a particular group of peoples' genome, then you can target bad things against those people. I suppose that's true, but I can't imagine that that was anybody's thought in doing this, and I think you could make that argument about most medical research. You have to understand how the body works in medicine in order to cure it, but at the same time you can always use the information badly. Science is a double-edged phenomenon.

This led me to start thinking about my graduate student days when one of my colleagues was in a department related to anthropology, called pharmacogenetics. Pharmacogenetics tries to look at differences because people are all variable in their DNA, and people metabolize drugs differently. So if you're trying to heal somebody, you might be prescribing something that might actually be harmful because of population differences. Pharmacogenetics is an area of science that seeks to understand human variation to try to head off such things.

That led me further to think about a book that I purchased some years ago called The Mismeasure of Woman.Footnote ²³ Steven J. Gould published a book titled The Mismeasure of Man many years ago. The Mismeasure of Woman focused on the fact that, traditionally (which means before my time), medical studies used men as research subjects for the reason that men don't have menstrual cycles; they don't get pregnant. We now know of course that men do have fluctuations in their physiology from time to time. But at that time, it was thought that using only men would provide better controls in medical research than using men and women and children. And as a result, we didn't know very much about some medical conditions in women.Footnote ²⁴ A very recent example is that people have found that symptoms of heart disease are different in women than they are in men. I think that's very important. I may seem to have gone off on a tangent here, but I think it's important not to exclude certain groups when scientific studies are done.

Another criticism that you have just heard has to do with research ethics. Here I am sure I am naive. I'm sure that people have misused data, but there are ethics approval and review committees set up for all kinds of research. The Genographic Project seems to be privately funded, so maybe it's not subject to those, so I can't comment on that. I do think, however, that even though the Genographic Project says they're not going to do any medical studies on their samples, that it might be beneficial if they added that stipulation.

Who benefits from scientific research? Well, in my opinion, everybody benefits from scientific research. Just a couple of weeks ago I attended the Canadian Association [of Anthropologists] meetings in St. Peterborough, Ontario, and there was a very interesting symposium called “Collaborative Health Research in Aboriginal Communities.” Along the lines of some of Dr. Greer's comments, people were saying, “We don't mind human biologists coming into our communities and doing studies on us, but those studies have to be beneficial to us too. In other words, don't just come in and have a research question that you're interested in and go away and never tell us anything that results from this. Why don't you do something that's actually helpful?” Well, my reaction to that would be, why didn't people think to do that a long time ago. That's a very positive development and the sort of thing that everybody should be thinking about doing.

I'll end with a quote from Harry Truman that seems appropriate and one I apply a lot in my life: “It's amazing what you can accomplish if you do not care who gets the credit.” That's a really important thing for academics to be aware of. I think a lot of things don't get done because people are worried about who's going to get credit for it.

Again, I apologize if I seem naive, but I think that understanding the human journey should be of interest to everybody. Every culture has its own story about its origins, and I'm not advocating that one story based on a particular type of research should erase all of those other stories. It should be one additional story, and I hope that with widespread cooperation that sort of approach will be accomplished.

Some of my own colleagues say that any study that looks at any aspect of human variation is racist. Physical anthropology does have a sordid past. Relationships of anthropology with indigenous peoples in many parts of the world have a sordid past. You can't ignore it, but you also have to work to improve things. There are differences in human groups. The differences are cultural as well as genetic, as well as environmental, and it's important to try to understand those differences. To me the agenda is just to learn more about our species. Thank you.

Daryl Pullman: I'm actually not an anthropologist or an archaeologist. I'm a philosopher and a medical ethicist, and this particular project has almost become a hobby. I'm from Newfoundland, and of course we don't describe it as a homogeneous population for genetic studies, but we do have pockets of homogeneity, which does make it quite a great place to do genetic studies. We've had our own genetic misadventures there, not necessarily with our First Nations peoples, but with the population in general. I've been quite involved with research ethics around genetics and with some of our government's attempts to regulate commercial genetic research in that province. I'm also ethics and privacy advisor for a large pharmacogenomics project that's ongoing right now.

I've titled my talk “Genes R Us? Human Genetics and the Scientific Appropriation of Culture,” rather than speaking about “the cultural appropriation of human genetic material,” I'm going to try to turn this on its head, and put a different spin on it. I got into this through a project called the Ethics of Cultural Appropriation, run by a couple of philosophers at the University of Victoria, Conrad Brunk and James Young. They're putting together a book (now published) to apply ethical theory to an interdisciplinary study of cultural appropriationFootnote ²⁵—those practices involving the nonconsensual apprehension and/or misuse of cultural knowledge outside of its local and traditional context.

For each of the chapters in the book, they're bringing together what they call a “content expert”—somebody who works in the field, such as an archaeologist, anthropologist, museum curator, or somebody who actually works with cultural artifacts or cultural property—together with someone like myself who has a philosophy and ethics background. I'm working with Laura Arbour, a physician and geneticist who works throughout the north of Canada with several First Nations communities. I have to make a disclaimer on Laura's behalf because I'm not sure Laura would necessarily agree with everything I'm going to say here.

First, I want to talk about the problem of identity, because when we're talking about genetics and genetic appropriation, the use of genetics for the kinds of things we've been talking about here—especially as it affects people's stories—we're really dealing with the problem of identity. How do we identify ourselves? Philosophers have struggled with this since ancient times. There's a philosopher's story called “The Myth of the Ship of Theseus,” and it goes like this:

There's a ship builder who builds a ship and sends it off to sea, and each time the ship comes back into port, the ship builder has to repair it. So he takes off the broken planks, and he puts new planks on, and then he sends the ship back out to sea. But he always takes the old planks home. Over a period of many years, he reconstructs and changes every part on that ship. But then the question is, which is the real ship? Is it the one that's out there that's still sailing?—but it's been completely changed, or is it the one that's in the shipbuilder's backyard because that's the original one?

Philosophers have always had to struggle with the problem of identity. In a certain sense, what we're dealing with in genetics now with this idea of the appropriation of genetic materials, whether of First Nations or other peoples, is the problem of identity: “What is it that makes us who we are? How do we identify ourselves as individuals, as a people, and so forth?” That's a very complex story. Really, what we're talking about here in National Geographic's Genographic Project, according to their web site, is, who was your first ancestor? The new DNA studies say that all humans descended from an African ancestor who lived only 60,000 years ago. Uncover the specific path that led from him to you. (It was a him of course.) This, according to the web site, is the ultimate human story as written in our genes. But is this the ultimate human story, or is it a bill of goods that we're being sold?

So the question I want to explore is, what role should genes play in establishing one's cultural identity? We've already heard about mapping polymorphisms on the Y chromosome and mitochondrial DNA. But again, as has been stated already, and as Debra Harry mentioned, they're tracing one particular line. If you go back 14 generations, you've got 16,384 people. So we're going to identify one of them, and that's going to be your ultimate story. That's what the Genographic Project can do. So while there is, as we've been told, a lot of potential in other scientific areas to advance our knowledge about various kinds of things and so forth, the claim that it's actually going to tell us our story should really be taken with not just a grain of salt but probably a heaping tablespoon of salt, because it's not going to tell us our story in any really substantive sense at all.

These are pretty slender threads on which to hang genetic identity, because a single connection could disqualify you from part of the story that you've always thought was your story. Like the “single drop” rule of the American South; if you had one drop of African American blood, you were black. That was it. And of course a single connection, on the other hand, could qualify you. You might be part of the royal family. Literally thousands of people can be traced back to Genghis Khan. But what does it mean?

And then the question is who decides who's in and who's out? What are the criteria by which we say who's in? Because if you're a cultural insider, there are certain kinds of things within your cultural group that you can do and discuss and get away with that you can't if you're an outsider. If you watch black rap artists on television, they refer to themselves as “nigger” all the time. They can do that because they're insiders, but you wouldn't want to do it yourself. That's a graphic example, but it's an important example for all of these little cultural communities of which we are a part. So, is the insider or outsider issue going to be determined by whether or not we have a certain genetic allele or a particular genetic history that we can buy into?

Is everybody here familiar with the story of the Lemba? This is a tribe of about 50,000 to 70,000 living in the northern part of South Africa and Zimbabwe. For centuries the Lemba have claimed that they are one of the lost tribes of Israel. They keep the Sabbath and practice male circumcision, and they don't eat pork. Of course there have been other groups around the world that have claimed this kind of thing. In fact, the Mormons in North America claim that their roots can be traced to the lost tribes as well. In the Mormons' case, DNA testing showed that they aren't descendents of the Jews. But in the Lemba case, it's been discovered recently through Y-chromosome testing that the Lemba have a significant measure of what's called the Cohen modal haplotype, which is of the priestly tribe in Israel.

So what does that mean? Because Israel has the right of free return, anybody who can prove they're Jewish can go to Israel and become an Israeli citizen. Does this mean now that if the Lemba show up at the door, then Israel should let them in? Maybe they should, but it seems that the question might be a little more complicated. That's just one example of the complexity of what we're talking about.

As for the ethical-legal status of human DNA, whose genes are they anyway? Do your genes belong to you? I work with geneticists, and they say, “Well, we don't study individuals. We study families. Genetic information about an individual person really doesn't tell you anything. You've got to know the family.” So do your genes belong to your family, or do genes belong to an identifiable cultural group? There's a very real sense in which we might say that all of our genes belong to all of us, and we're all related at some level, back when one of your 16,000 relatives could well be one of mine.

So what constitutes a family or a group, and who has the right to speak for the family or group about whether or not to participate in genetic research? Are genes an actual resource to be exploited, or is it even meaningful to speak of human genetic material as cultural property as such? When we start talking about genes and a cultural group's genetic background, is it even meaningful to say, “Well, that's their cultural property”?

As far as gene patents are concerned, that's a ship that's already sailed. We've had a lot of angst over the last 20 years or so about whether or not we should have gene patents, but the fact of the matter is, aside from whether or not we think it's morally appropriate or inappropriate, there are 24,000 to 30,000 genes in the human genome, and there have been over 3 million genome-related patent applications to the U.S. Patent Office to date.Footnote ²⁶ That's the reality. So either we can continue to rage against the machine, or else we have to accept that reality and try to readjust our practices in a way to take it into account.

And that's exactly what's been happening in genetic research in general, as we've moved to incorporate ideas about benefit sharing. Historically, if you were a subject in a regular pharmaceutical research study that didn't include the collection of genetic materials such as a drug trial, for example, there was no expectation that the pharmaceutical company that sponsored the study would give you any benefit other than to say that there's a possibility that you, or other people who have the disease that they're working on, might benefit from the drug. But it was clear they weren't going to give you any of their profits. But this is changing in the genetics era, and there are lots of cases out there, including Newfoundland, where things are being put in place to require that pharmaceutical companies that want to do research that utilizes the Newfoundland genome will be required to negotiate some kind of a benefit-sharing scheme up front in order to gain access to the DNA.

The reason we do this has to do with the nature of human DNA. Without getting into detail, legal scholars describe DNA as a sui generis legal entity, which means it's an unique legal category. It doesn't fall neatly into any other categories. Genes are neither only person nor property nor natural resources, and sometimes they're referred to as the common heritage of humanity. They are discussed in either or any of those particular ways depending on the context and their use. If Novartis or Pfizer wants to do genetic research in Newfoundland, they're going to have to negotiate a benefit-sharing agreement with us up front, because the Province of Newfoundland is treating the Newfoundland gene pool as public property, such that if others want access to it they will have to negotiate a benefit-sharing agreement.

Property laws become the de facto means by which to protect various economic interests in human genetic material. However, this fails to address the broader cultural concerns raised by the collection and use of material for research purposes because it is so difficult to characterize human genetic material as cultural property in any meaningful sense. To me (and I think here is where Laura disagrees with me), human genetic material is neither cultural object, cultural subject, nor does it represent cultural content per se—it is just genes at that particular level. Now, that's not to say that your story as a cultural group is not going to be affected by where you think those genes came from and so forth, but to treat it as property in that strict sense is hardly where we really want to go.

When genetic markers conflict with other types of group membership such as a shared cultural historic narrative, this genetic evidence has the potential to destabilize longstanding patterns of community membership. And that's not something to take lightly. Carl Elliott, a physician-philosopher, and Paul Brodwin, an anthropologist, say it's worth remembering that genetic ancestry tracing has the potential to disrupt identity claims as well as to corroborate them, especially given the imprimatur of science.Footnote ²⁷ For example, your cultural group has a story that has been your traditional story for perhaps centuries, but now science is going to change your story. Should it?

I come from a very conservative religious background where we were taught the creation story, and that evolution was wrong. Some people who come out of my background still believe that we shouldn't be doing evolutionary biology because it upsets Christians. But most of us would say that we're not going to stop doing evolutionary biology because it upsets some Christians. Actually, the Christian community generally has found ways to accommodate those things. And we're going to have to start accommodating because science is a story—a science story—and it's an important story. It's going to conflict with some of our creation stories, but we're going to have to come to grips with this idea and deal with it.

Eric Juengst said, “No matter how great the potential of population genomics to show us our interconnections, if it begins by describing our differences, then it inevitably will produce scientific wedges to hammer into the social cracks that already divide us.”Footnote ²⁸ This is the real concern about some of the diversity projects and the Genographic Project; that we're going to start identifying the differences between us and use them to say, “That's why you're an outsider and I'm an insider,” and so forth. There have been cases where First Nations groups in the States have used their genetic background to exclude certain groups from land claims. And my previous slide showed a Seminole Indian who has now been told that he's not a Seminole after all, even though he'd always thought of himself that way, because he doesn't have quite the right genetic makeup.

Kimberly TallBear has said that it's one matter for tribes, scientists, and government to look for cultural affiliation and cultural artifacts, but a different matter when it comes to cultural identity and cultural practice and voicing assertions of that identity.Footnote ²⁹ However, there are no concrete answers in DNA about cultural affiliation, cultural identity, or about the morality or justice of any one decision regarding the fate of ancient remains and claims to cultural and political autonomy and rights. Even with DNA analysis, Indian people, scientists, and lawmakers are still left looking for answers that lie in the imprecise sciences of ethics, religion, and legal jurisdiction. The point here again is we don't want to cede ourselves to genetic studies. We don't want to say, “Well, that's it. That's the final story. That's the real truth.” Because every scientific project is also a political project, and every result that's presented is presented in a context for a particular purpose. There are a lot of value judgments being made and so forth, and we have to weigh all that we can in the balance. That's the reality of the world we live in, and we have to think about how we're going to manage it.

And as the case of the Lemba graphically illustrates, it's not only the identity and culture of those from whom genetic samples are taken that is at risk, but also that of other cultures [who may] unwittingly be biologically implicated. In the Lemba case, their decision to enter into a genetic study about their background had implications for the nation of Israel. Again, research like this can be used as a means of inclusion or exclusion. Imagine if someone who always thought that they were a First Nations person discovered that, “well, genetically you didn't quite make it in, and now you're not going to be able to participate in our cultural practices anymore because you're an outsider.”

If genetic material is to be treated as property, we already have established means to protect various property claims, and we're developing legal benefit-sharing mechanisms to further protect those interests. But when we're thinking about cultural identity and so forth, we're not talking about property law, but about the law of persons. And we must treat genetic information as one among many of the tangible and intangible factors that contribute to the amorphous category of identity and how we treat each other respectfully as human beings. As many of the other panelists have said, there's a lot of shoddy research that goes on out there with either informed consent or no consent at all. Given the history that we've had with First Nations people, I think we have to be particularly sensitive about how to engage, and they have to have a particular role to play. There will be some communities that are simply going to say, “We don't want to participate in the Genographic Project or any other genetic project,” but this could well be a futile attempt to avoid a conclusion that is going to be derived through other scientific means anyway. So we just have to come to grips with this reality and start to develop other social and political mechanisms to approach these identity issues in a more equitable manner.

Dongya Yang: When George first asked me to talk about the Genographic Project, I was kind of happy to do so since I had heard of this project before. But as for talking about the decoding and the implications for archaeology, I was a bit hesitant and was not really sure what I could have to say. My own specialty is with the techniques of ancient DNA, or DNA analysis of ancient remains. But I saw this as a very good opportunity to start to think about these questions because eventually everyone in my field has to face the issues sooner or later. Here, I would like to provide my comments from a different perspective—a practical perspective.

When looking at the impacts of the Genographic Project on archaeology, I can identify at least two major implications. First, it provides an alternative way to study the past, since the Genographic Project addresses some of the same research questions as archaeology, such as migration timing and routing. Second, the Genographic Project may involve DNA analysis of archaeological human remains, which raises many concerns about privacy and ethics. DNA analysis itself is extremely powerful for forensic identification in today's society. An assumption has “naturally” developed among the public that ancient DNA is also capable of linking the past to the present populations or individuals at the same way as it does for forensic identifications.

The project correctly advocates a statement about ancient DNA's ability to remove the time barrier between the past and the present; this is largely true, but the possibility of accurately linking past individuals or populations to the present ones may be somewhat overstated. If so, it makes all the ethical and legal issues of modern human DNA studies also relevant to ancient DNA studies of archaeological human remains.

Many challenges and issues associated with modern human DNA studies were listed on the abstract for this session, such as access to samples. There are many outstanding questions that need to be addressed as well. Is the human gene the property of someone? Is it a cultural property of a group or a population or just a thing of nature? Who can have the permission to conduct research and analysis on the gene? More importantly, who has the power to issue or not issue the permit to study the gene?

Even more challenging issues can be found associated with the ownership of obtained data. Let's say that everyone gets permission to conduct DNA research. Next, we will face questions about who has the right to own or to interpret the data. Who owns the DNA samples? Who owns the DNA data? What data should be published and made available to the public domain? And what will actually become public domain information unless everyone owns this? So we see there are many complex issues related to ownership.

We know that only the short length is from mitochondrial DNA, but there are many more genetic materials in one individual's total genetic makeup; there are three billion base pairs of nuclear DNA in human DNA. Even if you have permission to study human mtDNA, do you automatically have permission to study the rest of the DNA codes there or [do] you need to get separate permission to do so?

What are we going to do about this? Consultation and negotiation are the first things we have to do, and we need to clarify some confusion and misunderstanding surrounding DNA analysis. Scientists will have to be honest with what they can do with their research and show that they can be trusted. Honesty is extremely important. Eventually, if we can come up with an agreement among all the parties involved, that would be the best solution. In terms of ownership and the right to conduct research, we would have to negotiate and come to agreement. DNA researchers don't want to see themselves in a situation where they are told, “You can only do this type of research; the another part is the responsibility of another competitor or researcher.” We will need to have all the parties involved to come up with a package for negotiating an agreement.

I want to remind people that ancient human DNA research is significantly different from modern human DNA studies. Ancient DNA has received a lot of public attention, but much of its potential is not reality yet. I am an ancient DNA researcher, I love ancient DNA potential, but I also know its limitations. So I may have to say that compared to modern DNA, ancient DNA can only yield limited information and only answer some very specific questions at this time. Surely, the obtained information can be extremely useful for addressing some archaeological questions.

There is another concern that we have not really talked much about on the panel yet. That is the conflict over the potential commercial value of ancient DNA studies. In modern DNA studies, we can identify genetic information related to a particular disease, patent it, and may make a billion dollars, but not when it comes to ancient DNA research. Ancient DNA is degraded so badly that only an extremely small amount of DNA is preserved. These short and damaged DNA are simply not adequate enough to conduct any meaningful gene-hunting business. There is not really the same kind of potential for commercial value in the field of ancient DNA when compared to modern DNA.

Although interpretation of modern and ancient DNA for the study of the past can be very challenging, academic DNA research should not be influenced or controlled by non-science factors. Academic freedom should be encouraged and respected; this is the foundation of any scientific endeavor. The peer review process is in place for any academic publications, ensuring scientific rigor and oversight.

The human study is a complex matter, past or present; it is much more than just a biological population of Homo sapiens. We have to be honest with our data and careful with our interpretations and conclusions. For human DNA studies of the history of one or more populations, many other lines of evidence must be incorporated. For ancient DNA studies, reliable non-DNA evidence should be trusted and used as a check against contamination. As an ancient DNA researcher, I trust myself that I can do good lab work, but I don't think I can interpret my DNA data correctly if I ignore all other non-DNA information associated with the research question.

Promotion of research through public media is a very effective way to disseminate research, but we have to be very careful when we communicate with public media since there is always a chance that something will get lost or changed in the translation from academic language to plain English. For example, we as researchers have the tendency to “exaggerate” the potential or claims of our own studies (since we all love what we do and are seeking better funding). But the media's own imagination and desire to attract larger audiences may amplify these claims, making our research look very, very glorious. It looks fantastic and will solve the problems of the world! For the study of history, it seems that we eventually end up with the kind of history of humans that others have mentioned here—an ultimate history.

What the public will pick up is the kind of fascination or puzzle where 9000-year-old “Cheddar Man” has been linked to a local schoolteacher in Somerset, England. When we look at that, we would say, it's fantastic for a newspaper story. Academically, we know that there are actually many other interpretations and implications of that kind of identical mitochondrial DNA sequence shared by two individuals many thousand years apart.

Another case involves DNA's determination of descendants for some famous individuals in history. For example, in the media's report in China, it looks like that DNA can determine for sure if someone is a direct descendant of Confucius who lived over 2000 years ago. The reality is that we cannot do this in practice because there are so many generations involved.

It's a good thing that people have started to think about some of these issues. Some think that DNA study is really cool—the fact that they could trace back to an ancestor 2000 or 9000 years ago, but others feel it is scary—DNA can reveal everything of someone's genetic history. Some say, “I don't want to know that,” or “I don't want other people to know that.” All of this affects the way we design research and interpret our data.

What I would suggest, from an ancient DNA researcher's perspective, is if we want to do ethical research and make our research relevant and useful, we must be honest with our analysis of both the pros and cons of this kind of research; we have to let people know the limitations, and we have to be frank with the outcomes of our projects. We may want to prove that we can link to a particular set of human remains, but in reality we may not be able to do this.

Finally, we have to be interdisciplinary when we interpret our data. Just because science is done on DNA data does not automatically mean the interpretation is scientifically sound. Indeed, any ancient DNA study, or any modern DNA study, will have some conflicting implications and controversial concerns. This is the nature of scientific research. We need dialogue, we need discussion, and we need interaction to reach better understanding and to avoid the misuse and the abuse of ancient DNA. The use of ancient DNA for commercial profit is not a big concern at this time. It seems to me that our main concern should be the misinterpretation and misuse of data and misunderstanding of DNA research, which can be avoided through dialogue among all the parties.

[A question-and-answer session with members of the audience ensued.]

Julie Hollowell (moderator): My question has to do with the rights of people at the source in regard to what happens downstream. It seems that once blood is drawn, people at the source often have no rights to what happens to the material downstream. I'm thinking of the Havasupai case, where blood drawn for diabetes research was used for purposes other than originally intended. This seems to be a major issue with genetic information—the fact that it becomes property and can be commercialized for other purposes downstream. Would anyone care to comment?

Daryl Pullman: In any research, at the end of the day you're at the mercy of the integrity of the researchers, because they can tell you anything—and promise anything. But you actually have very little control. Our university now requires a material transfer agreement when we ship DNA material, so that if we want it back, they'll send it back, but it's difficult to enforce. Generally a research ethics board requires the protocol and the consent documents to say what you're going to use it for and so on. But again, you really are at the mercy of the researchers, and you depend upon their integrity.

Jerry Cybulski: As for the two China Lake skeletons, we sampled two teeth in one. The other person didn't have any teeth and not much in the way of jaws, so we sampled a section of femur. These skeletons were reburied during a reburial ceremony in May [2006], and any leftover items from the DNA analysis were sent back and included in the reburial, so there's absolutely nothing left of the two skeletons.

Sheila Greer: If the OCAP principles developed by the National Aboriginal Health Organization for First Nations health studies in CanadaFootnote ³⁰ were followed, then these issues would be adequately addressed. At the same time, the capacity of the indigenous government, organization, or other body is often taxed as far as the ability of their staff—or consultants engaged as advisors—to make sure their interests are adequately recognized or protected. Financial resources affect the situation significantly. When it comes to research and studies, my personal experience tells me that “he who pays the piper calls the tune.” I cannot speak strongly enough about the importance of First Nations or other indigenous organizations having their own resources—resources that are independent of any process that may compromise their ability to act in their own best interest or as representatives of their peoples.

Debra Harry: I want to begin by talking about the rights of Indigenous peoples, period, which is what distinguishes Indigenous peoples' relationship to genetic researchers or genetic research projects from just an average citizen of a country or a state. First of all, it's not just a human rights issue, but an indigenous rights issue for us. There's a growing body of international law that recognizes the rights of Indigenous peoples to self-determination, which means that we control all aspects of our development, our territories, our resources, and so on, including our DNA.

Second, there's an emerging principle called “permanent sovereignty over genetic resources,” which represents a growing body of international human rights law that recognizes that Indigenous peoples have a collective right to lands and territories they've traditionally used and occupied. They have a right to use, own, manage, and control those natural resources, and these include genetic resources.

This principle is further upheld in the UN Declaration on the Rights of Indigenous Peoples, which recently passed the UN Human Rights Council in July.Footnote ³¹ This document also recognizes the rights of Indigenous peoples to genetic resources and addresses questions of control and use and access.

Finally, if that's an established principle, a right, then cases like the Havasupai case come up, because the Havasupai case involves not only the wrongs done to the individuals who gave their samples for diabetes research, but the fact that their samples were used for all kinds of other things including research on inbreeding, schizophrenia, and human migrations.

The Havasupai tribe has filed for damages to their collective right. If the courts decide in their favor, it'll be the first case where a tribe has been able to hold researchers accountable. To me, ethics are not enough. Ethical guidelines are not enough. We have to look for real legal solutions, real means of accountability, whether you're starting with contract law and then moving beyond, so that we have real forms of accountability in this field.

George Nicholas (moderator): Jerry, what about the Nuu-chah-nulth blood case? Would you speak of it in terms of how it relates to this?

Jerry Cybulski: This incident occurred on the west coast of Vancouver Island in the 1980s. Ryk Ward, now deceased, was one of the people involved in a project at UBC [University of British Columbia] that collected blood for an arthritis study from the Ahousaht, one of the Nuu-chah-nulth communities. A paper was published on rheumatoid arthritis, which actually was very good, with Ward as one of the authors. Later the blood was used for mitochondrial DNA analysis, and that information was also published. The Nuu-chah-nulth, or rather the Ahousaht, were not consulted about this second study. It received a lot of media attention at that time, and there were threats of possible lawsuits, but I don't think anything ever came of that.

Daryl Pullman: Actually, they did plan to get the samples back, after the researcher died. Laura Arbour was quite instrumental in helping the Nuu-chah-nulth contact Oxford regarding the status of those samples. By that point they knew that the blood samples had been used for other kinds of research. They did plan to get the samples repatriated a couple of years ago. That was their main concern.

Debra Harry: The Nuu-chah-nulth case raises another issue, though, of how difficult it is for an indigenous group to repatriate samples once the samples have been taken. We are talking here about a repatriation effort launched by the Nuu-chah-nulth in 1984, 20-some odd years ago. The Yanomami are still trying to get their samples back that were wrongly taken from them over 30 years ago. Ryk Ward had promised to give the Nuu-chah-nulth their DNA back, but he never followed through on that commitment. It wasn't until he died that his wife actually transferred the DNA back to the Nuu-chah-nulth.

Anne Katzenberg: I'd like to address something that is bothering me a little bit; the concept that because something's scientific, it's the final answer. Certainly that's not the way science works. At the physical anthropology meetings held in Anchorage in March 2006, we heard some very interesting papers on some of the mitochondrial DNA haplotypes that are associated with First Nations in Canada. One reason that Jerry's findings are so interesting is because it's the first discovery of haplotype M. Previously people thought that mitochondrial DNA was not selected for, and it was therefore a really good population marker. But at least in this case there's some evidence that people living in northerly regions and moving across a very cold part of the world had some selection for this genetic marker, which is not just a population marker. Findings like these are going to change a lot of the interpretation. And there's always going to be additional work done.

Dongya Yang: I agree with you that the public has this kind of thinking about science and scientific investigation. Indeed, science probably will create more questions than it will answer. We should encourage this kind of endeavor, the exploring of alternative lines of evidence to see what different perspectives can tell us about history. But oral history and beliefs—and this is the cultural part—we don't have to put them all together. Sometimes they're two different systems. Scientific investigation is just one way people try to understand what's really going on. But it may take us a hundred years—no, a thousand years—and most likely we will never really get to the point of solving all the problems. If we would ever reach that point, what would we do next?

Daryl Pullman: In the community where I work, the hype around genetics in general is referred to as “geno-hype.” There are things we see in the newspaper almost daily: a cure for smoking, a cure for Alzheimer's disease. It's all hype. I have been working with geneticists for about six or seven years now. I knew virtually nothing about genetics beforehand and don't know much more now, but I often say that we know less about genetics now than we did when I started out in the field. One of our geneticists was explaining basic genetics to me, and he talked about junk DNA. “What's that?” I said. “Oh, it's evolutionary garbage. It doesn't do anything. It's just left over.” I replied, “I bet you in five years there's going to be a cartoon in the New Yorker that shows some guy pointing to a double helix with the class sitting there saying, “And we used to call this junk DNA.” Everybody will laugh because it didn't even take five years to discover that DNA that doesn't code for proteins is still doing something, even if we're not sure what. There's plenty of mystery there.

It comes back to the question of how much weight do we put on genetics in terms of our identities? The public tends to put quite a bit of weight on such things, and I'm afraid the courts will as well, as they did with the Seminole case, for example. As far as I know, that is the only case where they basically said that some people are out because they didn't have the right genetic mix, so to speak.

Debra Harry: The question of genetics and the relationship to cultural affiliation or tribal affiliation gets right back to the question of rights and the exercise of self-determination or sovereignty, which basically says that a nation can determine its own membership. The determination of who's a member, who's in or out, is a political decision and not based on biology. As we've already discussed, biology can't answer the question anyway. Some tribes may be choosing to use genetics to support their political decision making, rightly or wrongly. Other tribes are using other means, whether it's direct lineage or descendancy or blood quantum, which is problematic as well, but that's how people are handling membership. It's a matter of political sovereignty, an exercise of self-determination.

I want to reiterate that we're not being anti-science or anti-research. There's nothing wrong with research. There's nothing wrong with sound scientific inquiry. But we are definitely pro–human rights and pro–indigenous rights, so we're looking at these research projects from that context. How does it impact us? What is our role? What is our relationship to it? What are the possible implications of it to us? Our analysis is based on these perspectives, not from strictly a scientific question.

(Audience questioner) Bjorn Simonsen: I'm Bjorn Simonsen, an archaeologist from British Columbia. I'm interested in this whole issue of permission, ownership, and how you arrive at some understanding of those things because it's not all unlike a lot of other archaeological or anthropological work that many of us do. In other words, before we do any work in a First Nation, we want to make sure that that First Nation wants us to be there. So we go through various consultation processes, and have written agreements and individual agreements when we conduct traditional use studies; the person that's interviewed signs an agreement, and we sign another agreement that has certain conditions. It begins to get complicated, but part of the problem is the step before that. A lot of researchers go directly to the elected chief and council, which is a political level above an individual. They make a presentation, have a couple of meetings, make an agreement, maybe do a little bit of a consultation, and figure that's good enough. And yet their work involves individuals or groups of individuals or families, and things start falling apart. Even though individuals might go along with some of the research, maybe because there's an honorarium or maybe a wage being paid—all kinds of inducements come up. The same things happened of course when the collectors used to go out and buy ethnographic objects. A person sold that object, and later it comes up at auction and sells for a $1 million. Do they really have the right to turn that over? Those are real problems for me, and I don't know the answer. How does that apply to DNA in particular, since there are plenty of parallels.

Carrie Dan: In my community, it's a community decision. People like Jerry and Dr. Ripan Malhi have come in and given presentations to the community. Then it's up to the community to decide if they want to participate or not. There's one band I can think of in particular that often doesn't want to participate, and we've left it at that. After the community decides, and the chief and council have consulted with Jerry and myself, there are informed consent forms to be filled out. Dr. Ripan Malhi never knows who is at the other end; all he knows is that Number 3 is haplo A (or whatever)—that's how it works.

(Audience questioner) Bjorn Simonsen: Just a comment on what Carrie has said, because that creates another problem. When you say community, who is that community? Are they people who turned up at that particular meeting who said, “Yeah, this sounds like a good idea. Nice presentation.” That concerns me too because I've been to a lot of First Nations communities and done some work which seemed to be okay, everybody was in agreement, and then later on you find out that there were all kinds of people in that community who really didn't believe in that project, but they weren't at the meeting. They weren't asked to attend or they didn't know about it. How do you get an entire community involved in these kinds of issues? It seems to me that when it comes to things like DNA and the implications of what we can or can't do, it's so important that you really need not just a majority, but ideally the whole community. I agree with what you're saying, and I know that that's a good process, but within the community itself maybe it's not seen as feasible.

Debra Harry: I think your question is a good one because it's the nature of the subject matter, which is DNA. There are other things that I would consider inalienable; things like our traditional knowledge, our language, our songs, our stories, our designs. Those are all related to cultural heritage or our cultural patrimony. If you consider genes to be within that context, along with traditional medicines and your knowledge about those medicines, if you consider them to be a cultural right, then no individual can really give consent to alienate those things because they're inherent and inalienable as a collective right. We're encouraging tribes to think about genetic material from that perspective and not allow their genetic material to be alienated. Once it goes into the IPR (Intellectual Property Rights) system or into the research labs or whatever, it is alienated, patented or not. The John Moore case sets a very dangerous precedent for everybody concerning what happens once the DNA is removed from your body. It's a case that came to the California Supreme Court in 1980, where the ruling was that once DNA is removed from your body, you no longer have a property interest over it.Footnote ³² You can no longer control who commercializes your DNA, because it's not yours anymore. Anybody can commercialize it. It's a wacky decision, but it still stands.

So we're trying to help tribes prevent the alienation of that genetic information, and one of the tools that we've used is assisting tribes in setting up a regulatory framework around research that makes DNA and traditional knowledge or other things that are important to them inalienable in that process, so the genes can't be patented, traditional knowledge cannot be copyrighted by external entities because they assert a cultural collective right over those things. Basically we're trying to use the framework of self-determination to protect those things, because the reality is, as you said, the genie's out of the bottle. Human genes are being patented, so how do we work around that, and how do we protect any further damage from this field?

Dongya Yang: We can plainly see the history of the genetic study of DNA. In the 1960s or 70s or even 80s, people did not need to pay much attention to the ethical problems, legal problems and the potential for making money from the DNA sample. I don't think at that time that we had any strict policies or regulations. The Human Genome Diversity Project (HGDP) announced their launch in the 1980s with their aims to document all of the DNA sequences of the human being. Later on in the late 1990s, a private company also rushed into the sequencing race since it saw the commercial potential for patenting the DNA sequence. Fortunately, by the end, HGDP and the company reached an agreement that all DNA sequences of the human genome would stay in the public domain. Obviously, issues related to DNA analysis are not limited to indigenous populations.

Sheila Greer: I work for a self-governing First Nation, a context that has made me very aware of the issue that Bjorn has raised. For those Canadian First Nations that have achieved self-government rights, the process of implementing these rights in the contemporary context is very informative and also very challenging. For self-governing First Nations, it is a matter of scoping out where, or in what realms, the interest of the collective will predominate, as opposed to those where the interest and rights of the individual take precedence. The issue is complicated because we are talking about the rights of individuals within a collectivist society.

Scoping out the rights of the collective versus the rights of the individual has been an ongoing process for the ten years since Champagne and Aishihik First Nations achieved self-government. It is something for which there's no clear black and white; it is being worked out as issues are dealt with. It comes to the fore in situations where traditional knowledge policy is being developed, in situations where the First Nations government does not want to limit an individual's right to make a living as a consultant or by publishing a book or whatever, but yet the rights of the collective (e.g., in terms of how information is dispersed and used) has to be considered.

It is my hope that indigenous governments can be given adequate time to scope out, in their own terms, the rights, responsibilities, and interests of the collective group and of the individuals who comprise the group. Exploring these issues, as well as practicing and exercising their jurisdictional responsibilities, is best not done in a pressure cooker context. I believe this is what is taking place in the Yukon at present, where new developments are more limited in scope. This is in contrast to the Northwest Territories and Nunavut, where pipeline issues and the development of diamond mines are putting extreme pressure on indigenous governments.

Daryl Pullman: Whether we like it or not there are going to be patents applied for. But I want to put a wedge between thinking of DNA in the sense of property and the sense of what it contributes to our cultural identity, because it's a different kind of question. Sheila, the group that you work with wanted to do their own ancient DNA research?

Sheila Greer: Yes, for a very specific purpose.

Daryl Pullman: For the purpose of trying to identify whose family this ancient individual might belong to. But then later on you said, “But in our communities it's not about the individual—we treat it as community.” I wondered, what would be the purpose then? You might get an answer that was quite different. What if it turned out that we thought this was one of our ancestors, but genetically, science says he is not. Because one way that a community might look at that is, here are ancient bones found within our area, and we're going to take responsibility for these bones.

Sheila Greer: One of the comments from the community is, “He belongs to all of us.”

Daryl Pullman: Yes, but you can ratchet that up—the literature talks about the human genome belonging to all of us as well, to all of humanity, while at the same time, communities want to exercise a degree of control over it. I'm trying to make the distinction between a kind of property law, which falls under criminal law. For example, if you steal somebody's property that actually belongs to them, then you can be brought to court under criminal law to be held responsible. But there's also the law of persons that has to do with personal offence and so forth. This falls more under tort or civil law. Some of the control that we want to exercise over our DNA is not as cultural property per se, but over the implications that it has for us as persons. We almost have to keep those two separate at times, because the scientific endeavor is going to go on, and it should. It's the same kind of thing as when Darwin published The Origin of Species. There were a lot of people upset, and most of society was quite offended by the implications. But science usually doesn't wait for us to catch up in that regard.

This doesn't mean that these aren't important questions, because they have real implications for the way we define ourselves as peoples, but I'm not sure that property law is the best way to deal with all of the issues that we're trying to talk about here.

Sheila Greer: I like what you're saying because as we try to minimize the potential damage of the outcome of the Kwädày Dän Ts'ìnchi Community DNA study, we want to define affiliation in better terms, in indigenous terms. In the cultural area where I work, they have their own system for defining a person as a living being. Their world divides people into Crow and Wolf (moieties, to use the anthropological term), or if you're on the coast, Eagle and Raven. Can we fit the person into those conceptual terms? Instead of using the individual, perhaps use a sense of family, or otherwise find a way to interpret the study results in cultural terms.

Debra Harry: One thing that is coming down the pipe, per se, and forcing us to make decisions or take action on these issues is international standard setting. The entire issue of protection of genetic resources and traditional knowledge is an active debate in international arenas, including within WIPO, the World Intellectual Property Organization. Something close to 17 other UN agencies are talking about these two themes. So what we're seeing is an imposition of intellectual property law over genetic resources and over indigenous knowledge being proposed at the international level. This of course forces us into a benefit-sharing scenario, because if you agree to commercialize your DNA or your traditional knowledge, then you will agree to participate in some kind of benefit-sharing arrangement for that commercialization.

To us, this is not a good scenario, but it is being forced upon us. We're following the WIPO debates very, very critically because what they're saying is, if you use this imposition, this model, then traditional knowledge becomes subject to copyright. Genetic resources become subject to patent and patent protections. So you've got the alienation scheme built-in; you've got the public domain scenario coming in; and all of that impacts the long-term collectively held resources and knowledge of indigenous peoples in a very negative way.

Second, on the issue of repatriation and genetic research, our experience in the United States has been really traumatic, especially with the Kennewick case. We already have a national law, the Native American Graves Protection and Repatriation Act (NAGPRA), which was a human rights law that essentially said in 1990, “the grave robbing has to stop. There is a human rights obligation to return these remains back to the people from whom we took them.” And so the repatriation process was instituted. But what we found with the Kennewick case is that scientific interest in genetic analysis of the remains of Kennewick Man interfered with the process of the repatriation of Kennewick Man.Footnote ³³

If DNA can't answer the question of cultural affiliation, then why would you do it? As far as we can see, the answer is to satisfy the curiosity of the researchers, and not to consider the wishes of the indigenous folks involved in that case. We've seen NAGPRA coalitions being set up all around the country, where these coalitions are tribes who are working together in regions, not allowing any destructive analysis of ancestral remains, and helping each other as they do this. This way, there won't be competing claims for repatriation; they'll repatriate based on locality or whatever and support each other so that they can keep the remains out of the hands of scientists who want to do destructive analysis.

Anne Katzenberg: I'm a co-editor of a book on advanced methods of analyzing human skeletal and dental remains, and we're now working on a second edition of that book. I was really struck by one of the chapters that has to do with the population variation in osteoporosis and how far in the past people have suffered from this disease, which takes a great toll today both economically and in terms of people's freedom of mobility. The author of the chapter on osteoporosis commented that there's a huge gap in our knowledge now because of the inability to study remains from the Americas since NAGPRA. I don't think that's really the outcome anybody wants.

Second, I've had students, one in particular who is from a First Nations community, involved with the study of curated remains for repatriation, looking at skeletal nonmetric traits and other indicators that would biologically link remains to a particular cultural group. Basically, our research as physical anthropologists has aided repatriation efforts. If you move to a position where you're just basing repatriation on locality, then you're denying learning any knowledge about the fact that people have always intermarried and migrated and interacted with other groups throughout the entire history of our species and indeed of our genus. If you just assume that somebody who lives in a particular region several thousand years ago is exactly from the same group that lives there now, you're denying the possibility of migration and interaction.

Debra Harry: NAGPRA basically weighs the evidence in favor of tribes, and it's based on a preponderance of evidence that includes not only locality but also oral histories, linguistics, archaeology, and all of those things.

(Audience questioner) Jennifer Campbell: I would like to shift my question to another area of the world. Who would be responsible for their own genetic information if the community has decided to speak and make a decision as a group about how they would like to have that information treated. My question goes to the pluralistic identity of community. I work in Pakistan, and in the tribal zones in Pakistan there are multiple ways of identifying oneself to a specific group, though they might be genetically isolated. Do you think the protocols should be on a global level for determining first what group should be speaking for the individual? Should it be the individual's choice to choose the group that will speak for them? I don't know if any of you have encountered situations like this, where there is more than one group affiliation that might be a viable means of representing an individual.

Sheila Greer: Life is never simple or easy for researchers; you've got to go out and do your work. You had best go in well informed and for the long run in terms of getting to know a people and understanding how they view themselves and their place in the world and in relation to each other.

George Nicholas: Jerry, with the overlapping territorial claims in British Columbia, have you run into this issue in working with communities?

Jerry Cybulski: From my own research, no, I haven't. It's a community decision. Working with Canoe Creek Band has been a very enlightening experience because the community has been involved from the beginning with the research we've been doing on China Lake and Big Bar Lake,Footnote ³⁴ and now we have another site in the works. All of it has been a community decision. The first time I went to meet the group to ask permission for the ancient DNA analysis, I gave a presentation. I knew very little about the Plateau region at that point, and all I could talk about was my research on the coast.

I was just overwhelmed because when I got there they had set up a reception in the community of 108 Mile House; they had rented a room at Hills Health Ranch, and lots of people were there. Four communities from surrounding areas were represented, and we went on for the whole afternoon. And the next time I met with them it was a community event again. Everybody was there, and it's just been that way for the last four years.

I firmly believe that these should be community decisions. I'm not sure you can make a global decision: “This is the way it is. It's written in stone somewhere out there in space that everybody adheres to these rules and regulations.” I do feel that consultation is extremely important. We're starting another project on Vancouver Island shortly, but I was told by one of the community members that it was a council member who said, “Go ahead and sample the individual.” I said to him, “I much prefer a community decision on whether we're going ahead with ancient DNA analysis in this particular case.” So we're still awaiting the outcome.

(Audience questioner) Scott MacEachern: I work in Central Africa in northern Cameroon where we have an equivalent issue to that in Pakistan. In North America we may have a situation where for legal and historical reasons indigenous people identify themselves with particular communities. But in northern Cameroon, genetic research is being done by a group of geneticists, and you have a situation in which people can with equal validity identify themselves four or five different ways, depending in part on ethnic affiliations or just a general level of social positioning that they have in society. In those circumstances, this issue of getting to know the people really makes a major difference.

In general, in African research, with some honorable exceptions, the geneticists have been extraordinarily and appallingly bad at getting to know the people. So what we have in terms of modern genetic data from Africa now are innumerable inconsistencies, lacunae, and straight-out errors in terms of people's identities; hundreds and thousands of such errors, some of them so egregious that they almost defy belief. Thus this question of learning identities and dealing with people, who may be displaying multiple identities under different circumstances at different times, is one that is extremely important on the African continent, and I imagine in other areas of the world as well, where different kinds of power relationships quite frankly exist between geneticists and the people from whom they are collecting material. These are extraordinarily difficult issues.

Among some people, especially with some historical geneticists, there is more of a consciousness of these problems, but not generally.

Jerry Cybulski: In the excavation at Big Bar Lake, the second project we took on, the High Bar Band in Clinton, south of the Canoe Creek area, also has a claim to that locality where there is territorial overlap. But we worked with both communities on the excavation, and so both communities were involved. Most of the work I've been doing lately is in British Columbia, and things have been a little different. I first came to give a talk—Carrie set it up—to member nations of the Shuswap tribal council, which covers seven different bands. In this case, it's up to the individual bands whether any of this work is going to go ahead, especially as it impacts their own community.

(Audience questioner) Nick David: I work in Central Africa, where the vast majority of people have been exploited by a whole variety of forces over the centuries, including Sudanic states, their own government since independence, and the colonial powers in between. It would be really ridiculous to ask them to sign anything, and they would be scared stiff to do so. What one therefore does is work closely with chiefs and elders—unfortunately this very rarely includes women—and you negotiate a relationship with them. It seems to me that there is a difference between people coming to take blood and people who are coming to stay in the community for a long period. As Scott said, a geneticist can come in, spend three days, get a sample and get out of there, and then more or less do what she or he likes to do. I was told—a long time ago now—by one such geneticist that he has on occasion persuaded people to give blood by telling them it would increase their virility. How do we deal with situations like this? This is my question to the panel. It seems to me that the arena in which this is played out is that of a Western legal system, and that to force such groups into it is in itself a profoundly colonializing situation.

Anne Katzenberg: Just one practical issue, having known people who collected blood from societies in the past for genetic studies. It's very perishable, and so the three-day trip is just a matter of if you want to have anything left to analyze when you get back to the lab. You had better have it on ice and on a plane very quickly, and if you want to make sure that it gets where it's going, you should probably go with it. That's a purely practical matter; I'm not condoning the practice.

As for the Yanomamo, I don't know a lot of the particulars, but I used to show “The Yanomamo,” a multidisciplinary study film in my Human Variation class, because it was an excellent depiction of a collaborative effort using a four-field anthropology approach, with James Neal collecting genetic information about small-scale societies that had not been highly impacted by contact at that time, a linguist there at the same time, and the cultural anthropologist who explained as best he could to everyone in the villages what was going on. I know there's been a lot of criticism of all of that subsequently, and I don't want to get into that debate,Footnote ³⁵ but it would be a very good model to have people go in advance and explain the research, explain the objectives, and the possible outcome. Overall, I think the study incorporated some of the concerns that we've raised here today.

Daryl Pullman: Your point is well taken in the sense that just as a “developed” culture approaching another culture to study man is a colonializing process, either we don't do it at all, or …

Sheila Greer: … or they initiate it.

Daryl Pullman: Well, that's another possibility. But all of our stories are evolving. We're evolving stories as a human species, and we've got different groups that are not well inclined to have a story. And the story that a First Nations community tells now is probably not the same story that their ancestors would have told about those things a thousand (or even a hundred) years ago, because those stories have evolved over time probably not even a thousand years ago. The stories evolve, and every culture adapts to its new surroundings.

We're not just talking about negotiating a contract, but negotiating in a cultural sense with communities and so forth. And it's always sloppy; it's always messy. We make mistakes, we go back, and all we can ask for is that we do it in good faith.

I can understand people working on the science of ancient DNA analysis and wanting to trace these things for purely scientific purposes. It's an important thing to do. But the cultural aspect of protecting stories is important too. We've heard stories today that not every First Nations group is opposed to destructive DNA testing. If they have their own particular purpose, they're willing to accommodate it, but it has to be their purpose. We could go in and force it on them, or we can give them opportunities, and they can discuss it. They may say no at first. They may change their minds and so forth. But 50 years from now things will be different.

Sheila Greer: I work for an indigenous government and came to them as an archaeologist. The people I work for are shaping and defining their kind of archaeology, as well as the place of archaeology in terms of their version of what history is and has been and will be to them. This is particularly evident in the contemporary context where so many new things are coming to light. For example, ancient artifacts are being found on mountain-top ice patches in association with quantities of ancient caribou dung. The community is asking what are these discoveries all about? And equally important, what do we do with these newly discovered things from long ago? Traditionally, the Champagne and Aishihik people were highly mobile, so they were very selective about their material cultural, the kinds of things they kept and passed on to future generations. Now, they are fitting material culture, including ancient forms of material culture, into their self-definition as a people.

It's the same with genetic information; it's a new thing that people have to fit into how they define themselves. The challenge that Indigenous people face is how to do it on their terms, whether it's material culture, whether it's DNA, whether it's the land and relationship to the land, and all the changes people have faced. The other day an elder asked me how all that information that is on the Internet got there, and proceeded to tell me his perception of how it came to be. It was one of those moments when I understood again how differently he viewed the world.

In the context where I work, I see self-definition as a positive thing, and part of nation-building efforts. New entities, such as the Champagne and Aishihik First Nations, were created out of the land claims negotiations process. In the olden days, the geographic and social boundaries of south Yukon Native societies were fluid and flexible, but for these new indigenous governments, such boundaries are firm and fixed. As a result, these indigenous governments must ensure that their citizens are comfortable with their indigenous government representing them in certain dimensions of their lives. These indigenous governments are using the tools available and the many new things that have come to them to help in that self-definition.

(Audience questioner) Scott MacEachern: There's an assumption here about who gets to tell stories and where the power in stories lies. Daryl Pullman mentioned the Lemba. The discovery of the Cohen modal haplotype in the Lemba was also associated by one of the discoverers, Trevor Park, with another tradition—Great Zimbabwe—apparently because the people there were supposed to have Jewish genes. This goes back to perceptions a hundred years ago, to the Queen of Sheba, because the Cohen modal haplotype also shows up early on in Yemen. What we've done then, using historical genetics and some fairly antiquated interpretations, is to throw our interpretation of the archaeology of Great Zimbabwe back 100 years.

A second example, even more egregious, concerns the Khoisan-speaking populations in southern Africa. In the 1970s, during the war in Namibia, the South African Defense Force (SADF) recruited a set of Angolan San–speaking people as trackers into the SADF and housed them near Omega base, which was in what's now eastern Namibia (at that point southwestern Africa). Their blood samples were taken by an SADF doctor, and the genetic material from those samples has made it into the wider literature on African genetic variability, and now it makes up some of the classical markers in mitochondrial DNA.

At the end of the war when the government of South Africa gave up on Namibia and left, these people were then relocated to Schmidtsdrift on the Northern Cape. They were resampled under a different ethnic name by another South African researcher who apparently didn't know about the first sample. Their genetic material then went back into the literature under another name, and these two samples are independently quoted in the literature, in several very well-known articles that claim that the Khoisan populations are among the earliest modern humans in the world, whatever that means.Footnote ³⁶

So here, on the one hand, we have a set of genetic studies that are implicitly denying a history to modern Khoisan people by saying the Khoisan are in some sense the earliest modern human population. On the other hand, those samples were extracted twice under conditions of tremendous exploitation of these particular people, who are now progressively being decimated in Schmidtsdrift by tuberculosis and alcoholism. Those data are now in the literature, and those stories are, I would argue, both unfair to the people who are being talked about and scientifically profoundly misleading. I think that's going to be something you're going to find when you have situations of such extreme power imbalance.

Dongya Yang: That is exactly the point I want to make. You have to be very careful with your conclusions and your interpretations because the subject of your research is a human being, and your conclusion will have some impact on them, one way or another.

Jerry Cybulski: I agree. The point that Anne made is also an excellent one, that there are real logistical issues about how these things need to be sampled or preserved—and those are perhaps different between modern DNA and ancient DNA, which has almost by definition been abused for centuries already. With modern DNA studies there are logistical issues, but at the same time you do get a lack of humility in a lot of cases with people acting as if they know a lot more than they actually do.

Debra Harry: Informed consent, institutional review, and board review are all important issues to consider in these matters. Institutional review and researchers' ethics are different from the cultural or ethical considerations that a study group or an indigenous group might have. The question then becomes, how do you really implement true informed consent at the community level?

In our work, we're encouraging tribes to actually set up their own review boards under a legal framework called the Indigenous Research Protection Act. Tribes have the ability to set up regulatory frameworks for research to evaluate scientific research projects from their own cultural perspectives. If they were interested in working with you as a researcher, they would review your informed consent process and make sure that it is modified so that it does serve the purpose of true prior informed consent. Other details would have to be addressed to have research approved, but this scenario totally changes the paradigm of research with tribes; it puts tribes in the driver's seat. It puts them in control legally of the oversight, in control of data and findings and all of it. A lot of researchers won't like it, but what you end up with is more beneficial research in the long run, because it's done as a true partnership. It's not colonialist, but co-owned. It's mutually beneficial, so that everybody has shaped the research agenda to meet their needs. A lot of researchers are resistant to that idea of communities having control over the process, but that's exactly what we're encouraging, so that we can have real partnerships.

The Indigenous Peoples Council on Biocolonialism has a lot of information on our web site.Footnote ³⁷ One of the major aspects of our work has been to help bring some genetic literacy to indigenous communities. Let's face it, not many people in the general public have a good working knowledge about genetics, let alone ancient DNA analysis or using genetics to determine tribal identity, or in biowarfare. We write briefing papers on these topics for indigenous peoples from an indigenous perspective, so we can take some of the cultural considerations into account.

One paper is “The Inappropriate Use of Genetic Analysis in Repatriation,” and another is “The Limitations of Genetic Analysis in Determining Tribal Affiliation, Cultural Affiliation.” These are written to educate community folks about what genetics can and cannot do as we approach issues like determining tribal membership or repatriation issues.

I would encourage you to use those, share them with the groups that you work with so that people have information to make informed decisions from the widest range of perspectives. The goal here is to have true informed consent, not just a process—not just a product, sign the dotted line, but a process where people really gain the information to be able to make informed decisions from their own cultural perspective in a way that actually protects their interests.

George Nicholas: I'd like to echo Debra's comments by saying that one of the goals of this panel was to work to increase literacy in intellectual property issues relating to bioarchaeology and many of the other topics we've talked about, for archaeologists, for indigenous peoples, for different stakeholders. This, in fact, is the primary goal of our larger project on intellectual property issues and cultural heritage. There's so much misinformation out there. At the same time, the legal aspects are poorly understood by archaeologists and all the stakeholders.

Daryl Pullman: I'd like to thank George Nicholas and Julie Hollowell for organizing this event, and for the opportunity to participate. I'd also like to express my deep appreciation to the other panel members and to those who attended this session for the thoughtful and stimulating comments and discussion, and for the deep respect that was so evident in all of the proceedings.

The successful completion of the Human Genome Diversity Project has marked this century as the “genomics era.” It has opened the door to wonderful new insights about the amazing genetic similarities we all share as human beings. In this respect the genomic story is common to all of humankind, and it is a story we should all celebrate and cherish. But as human beings we are concerned about not only that which we have in common, but also with that which makes us different. Our rich and diverse cultural backgrounds distinguish us from each other, and these stories of difference must also be celebrated and cherished. In this latter case, however, the genomic story should play a much less significant role. Cultures are rich, multifaceted, and amorphous; they emerge, evolve, and transform over time. Those who identify with a culture gain their identity from it, even as they are guided by and contribute to its evolving values, beliefs, and traditions. Genetic identity is not irrelevant to cultural identity, but we must be careful to ensure that genes don't play a greater role than is warranted in our considerations of cultural identity, and whether to use a particular genetic profile as an inclusion or exclusion criterion for who's in or who's out of our communities. Human genetic material must always be treated with great respect and dignity, but we are all—individually and corporately—much more than what can be discovered in our genes.

[End of panel discussion]