Summer Internship for Native Americans in Genomics is now accepting applications for our 2014 program to be held at the University of Texas June 1-7, and co-hosted by the Institute for Genomic Biology at the University of Illinois. This follows on the heels of the Native American and Indigenous Studies Association (NAISA) meeting here in Austin. Undergrads, grads, and Native American community members are eligible to apply for this program. SING involves five days of wet lab, dry lab, and biomedical ethics curricula focused on genomics involving indigenous people. This is a program for people interested in both the science and the ethics, and who are coming in at different levels and with different educational backgrounds.
An Indigenous Ontological Reading of Cryopreservation Practices and Ethics (and Why I'd Rather Think about Pipestone)
As presented at the American Anthropological Association 111th annual meeting, San Francisco, CA, on the panel: “Defrost: The Social After-lives of Biological Substance.”
Cryopreservation—or deep freeze of tissues—enables storage and maintenance of bio-specimens from whole human bodies, to plant materials, to blood samples taken from indigenous peoples’ bodies. And all of this happens within ontological, ethical, and racial regimes that never belonged to indigenous peoples. It allows the suspended animation and temporal transport of cells and within them DNA, life’s so called code, into realms beyond the bodies whose lives these biologicals helped constitute. That we have barely begun to read that code matters less, as my co-panelist Joanna Radin has pointed out elsewhere, than “desperate” desires “to accumulate fragments of a world whose inherent plasticity, augmented by the corrosive forces of modernity, seemed poised to render certain life forms extinct.
Radin calls for “cryopolitics,“a strategy for grappling with the unresolved problem of the appropriate use of old tissue for new purposes,” a response to the ethical shortcomings of narratives and practices past. In other enlightening ethnographic work, my co-panelist Emma Kowal explains the “biovalue” constituted by the ethical work and network construction of bio-scientists as they build collections of samples and curate them throughout their lives, hoping to cultivate intellectual descendants to whom they might bequeath their treasured bio-valuables—indigenous biological patrimony.
Bioethical responses emerging from non-indigenous institutions and philosophical terrain, including the incisive analyses of my co-panelists, teach me much. And leave me… speechless.
I have found myself these past months unable to think or write or do fieldwork for this project. I have not understood my own resistance. Faced with standing before you today, I had to admit simply that I am weary of having the agenda for what will be responded to set by those who are trying to figure out a way to do things better, but things that indigenous people never asked to have done in the first place. I learn much from my colleagues from around the world who chip away at tired old hierarchical regimes of knowledge production.
And I have been aided in my own critiques of the politics that inhere in the genome sciences by my grounding in feminist technoscientific epistemologies and ethics, including the concept of “feminist objectivity” that calls for inquiry from multiple, especially marginalized, standpoints. The argument is that inquiry from marginalized lives produces a more rigorous reading of the world, and knowledge for the benefit of peoples who have too often been treated not as the beneficiaries of research, but as its raw materials. Indeed, this is an indigenous standpoint talk.
But all of this is focused on response, and I’m running out of steam for that.
So I turn to yet another feminist scholar, Neferti Tadiar, who articulates a concept of faith that enables me to write—to speak here today—in a faithful attempt to regain speech: Informed by the voices of other Oceti Sakowin thinkers within and without the academy. More commonly known as Lakota, Dakota, and Nakota peoples, today we comprise multiple “tribes” in the upper Midwest of the U.S. and south-central Canada. Some of the thinkers who influence me are living and—like the biologicals this panel is attuned to—some are now beyond bodies. As I lean on their thoughts, words, and imperatives, I speak “in concert with” these people I call my own. Tadiar explains this as being “already caught up in the claims that others act out.” Refusing to be excised from them by some imperialistic, naïve notion of exact representation, I try to turn speechlessness into more than response, into claims about the world that I would rather see made.
Tadiar’s particular concept of faith helps me move beyond critiquing a non-feminist politics of objectivity such as pervades the genome sciences. That kind of critique comprised my work of the past ten years. Today, I hope to demonstrate how an indigenous standpoint can take us to an analysis of life and vibrancy that even a Western feminist standpoint cannot take us to.
But let me first highlight three critiques of the technology and practices we consider today, that are in part gestured to in my co-panelists’ analyses, but which I would cast in the shadow of an indigenous standpoint.
Cryopreservation aims to preserve “life,” but is predicated on death
Cryopreservation of indigenous biological samples is about life, the extension of life, the study of life, the preservation of life. But a notion of “life” focused on the largely indecipherable patterns and instructions that comprise DNA’s scaffolding. It is a materialist conception of life that I do not disagree with. Indeed, there is bibliographic beauty in it. But I know now why I don’t want to talk about it.
Cryopreservation recalls the poverty of the genetic articulation of indigeneity that becomes ever more salient in our world of genomics-as-nation-building. Cryopreservation, like genetic indigeneity, emerges not only out of technoscientific innovations but also from a discourse of death. Cryopreservation’s co-constitutive narrative is that gathering indigenous DNA is about staving off certain death, preserving remnants of human groups and their nonhuman relations, defined in molecular terms, and archiving those molecular patterns and instructions before peoples or species “vanish,” the so-called genetic signatures of founding populations obscured forever in a sea of genetic admixture. Death by admixture. Or actual extinction in the case of nonhuman species.
As Joanna Radin explains:
“Groups like the Yanomami or the Babinga did not live on the electric grid in real life—a signifier of their primitiveness—they, or at least pieces of them, could be frozen on it via the laboratory freezer. In this way, these populations would continue to live outside of time, and even outside of death”...Technologies of cryopreservation appeared a powerful way to keep them—or at least their genes—from going extinct.”
Genetic indigeneity, which grounds cryopreservation practices surrounding indigenous samples, and which is implicitly political, might focus on connection to the land and cultural cohesion, like indigenous peoples ourselves do. In biological sampling of a group, the idea of geographic and cultural isolation and longevity in place is paramount. But genetic indigeneity also fundamentally contradicts a definition of indigenous in its explicitly political social movement formation. For indigenous peoples ourselves, indigeneity as an organizing category is added to our people-specific understandings of ourselves. It helps us articulate our resistance as peoples to the assimilative state. It is about indigenous peoples’ survival, a “we are still here, and we are proliferating” discourse. Indeed, numbers of indigenous people have risen worldwide during the past two decades. This is not only about birthrates but about the generative success of the category. It is a source of power for peoples.
My forthcoming book, Native American DNA: Tribal Belonging and the False Promise of Genetic Science (University of Minnesota Press, 2013), and the last ten years of work have been about responding to the erasure of indigenous peoples’ survival in bio-scientific research practices and narratives over several hundred years. Notwithstanding recent collaborative efforts, the interplay of genome-focused narratives and the political economy of genome research both pre-suppose and enable the erasure of indigenous peoples and their cultures.
Cryopreservation enables appropriation of indigenous natural resources
Radin explains that the International Biological Program (IBP) that ran from the early 1960s through 1974, and which set the 20th-century scientific stage for the biological sampling of indigenous peoples (along with nonhuman communities) as remnants of a bygone world, an increasingly “civilizing” yet ironically toxic world. She reminds us that “The stated goal of research on primitive isolates was to salvage information that might benefit civilized communities’ understandings of themselves.”
But the conception of indigenous bodies as “natural resources,” the raw materials upon which nations are built, did not begin in 1960. In the 18th and 19th centuries too the U.S. nation building project relied on the appropriation of indigenous peoples’ lands. The U.S. positioned itself—positioned whites—as the rational agent capable of transforming nature in to productive property, and indigenous peoples in these lands as incapable of developing, indeed surviving in the face of the modern industrial state.
Whereas indigenous land (and bones and cultures ready for study) were seen as the rightful inheritance of whites in the 18th and 19th centuries and before—the live Indian has apparently been vanishing since contact, literally meeting death in the face of Westward expansion, or transformed biologically and culturally beyond recognition. Today rare, precious indigenous DNA is the remaining natural resource to be appropriated or stewarded “before it is too late.”
As Jenny Reardon and I wrote in a recent Current Anthropology article, in the 21st century, the goal is to transform the raw natural resources that are genomes into something of value for humans: Genome knowledge supposedly “for the good of all.” But who in pragmatic terms counts as fully human, and as recipient of those benefits is the question. Certainly a vanished Indian cannot make a claim.
Cryopreservation enables social relations, including with indigenous people, even while it continues to de-animate them
We see a partial de-colonization of Western disciplinary thinking and a dismantling of hierarchies between Westerners’ and their non-human others, indeed also their previously less animated human others, in this move to caretake biological samples via cryopreservation. We see recognition of non-human animacy, even if it is not explicitly stated in the analyses of my co-panelists, of human biological substance and the social relations it helps effect, especially that substance derived from indigenous bodies. Stewarded by non-indigenous scientists and institutions, the substance acts as object of mutual concern and desire by both scientists and the indigenous communities that lay claim to it. Inspiring, frightening, challenging and empowering the humans involved with it, archived biologicals help constitute social relations.
Co-panelist Emma Kowal offers something slightly different as well. In the process of stewarding cryopreserved samples, she explains that indigenous people become vibrant in the way that genome scientists newly pay attention to the affective networks and biovalue co-constituted with indigenous DNA. But this is paradoxical as Kowal points out because biovalue, “the production of scientific value from human body parts,” is a form of “surplus value” actually produced when “marginal forms of vitality…[including] the bodies and body parts of the socially marginalized –are transformed into technologies to aid in the intensification of vitality for other living beings.”
So indigenous bodies are both de-animated (After Mel Chen I think in terms of animacy) in the hierarchies of civilizing, scientific knowledge production. And yet, re-animated as living indigenous people become scientists literally or in name as co-authors or co-Principal investigators within new, more collaborative ethical regimes.
Entrance to quarries. Expansive skies (photo: K. TallBear)
Life, blood, and stone
Vibrancy. Animacy. These are among the words through which disciplines are recently articulating the force of nonhumans in our cultural, political, and economic lives. And though this work is innovative, both methodologically and ethically, it only partially engages indigenous standpoints.
Indigenous cultures” have not forgotten that nonhuman organisms are agential beings engaged in social relations that profoundly shape human lives. In addition, for indigenous peoples, their nonhuman others may not be understood in even critical western frameworks as living. “Objects” and “forces” such as stones, thunder, or stars are known within our ontologies to be sentient and knowing persons. This is where new materialisms intersect animal studies, and helps us to see that violence against nonhumans—water, earth, plant, animal—is linked to violence against particular humans who have historically been de-animated, made “less-than-human,” made “animal.”
Koyungkawi poet and acorn mushmaker, Linda Noel, explains to me that she doesn’t mind “being considered part of nature.” But she knows what they mean by that, and that’s not what she means. For Noel, non-human is not less than human, nor less alive.
On that note, I turn from indigenous DNA—human biological substance frozen out of place and time—to stone. I want to talk about stone, the life that inheres in a stone, the social relations that proliferate as that stone emerges from the earth, is carved into pipe, is passed from hand to hand. (You may have heard them called “peace pipes”—that’s not quite right.) I speak of Pipestone, otherwise known as Catlinite after the 19th-century U.S. American artist who painted the site where the red stone is cut from the earth.
There is a story that tells us about the blood in that stone, that along with our loving attention to its materiality enables us to apprehend its vibrancy, its fundamental role in our peoplehood. Unlike with indigenous DNA, this is not a cellular vibrancy. Yet without it, prayers would be grounded, social relations impaired, and everyday lives of quarriers and carvers depleted of the meaning they derive from working with stone. Here is that story:
It rained for many days, non-stop. A young girl saw a high hill and ran up there. Many of her people had already drowned. Alone, she began to pray. The rain suddenly stopped. She stood there, seeing nothing around her but water. Above in the sky she heard and saw a giant bird. He opened his wings. A man emerged. The man told her not to be afraid. He had come to rescue her. All of her people were killed in the flood, he told her. He wanted to marry her. Through their marriage together the humans would begin anew. When the water receded it all drained into one place. There in that place was the blood of all the people who had drowned. That place became the cannupa ok’e. The blood of the people, the red stone. 
Red is a sacred color for the Dakota, and so this place is taken to be sacred. The cannupa ok’e, the quarry, is also special to many other peoples whose members dig there today. The stone there is sometimes spoken of as a relative.
But U.S. Park Service pamphlets from the Pipestone, Minnesota quarry represent pipes as artifacts, as craft objects, and detail the history of white incursion in the area, into the quarry where Natives produced their artifacts, and the regulatory response of the U.S. government. These ways of understanding the stone and the landscape from which it is quarried—these material and regulatory histories—are not unimportant, but like the politics that enabled the production of indigenous biological samples abstracted from living bodies and vibrant peoples, these politics resulted in a de-animating representation of the red stone. Like bio-scientists in the 20th and 21st centuries with their imperative to bleed indigenous peoples before it was too late, a 19th century Euro-American painter and early 20th century geologists and government agents saw the place where the red stone lies as an artifact of a waning culture and time. They produced a “National Monument” to conserve it.
But like indigenous people who insist on their continuing survival and involvement with their DNA, indigenous quarriers and carvers, medicine people, and just everyday people who pray insist on living with the red stone daily. And they make decisions—some of them seen as compromised about how to best work with the vibrant objects of their attention. Some indigenous people agree to engage in research or commercial activities related to DNA. Others sell pipestone jewellery and craft pieces to make a living while also holding the stone and ceremonial pipes carved from it as sacred. Literal red human blood and the blood red stone have been translated into “resources.” And while this characterization is troubled by Dakota and other indigenous quarriers and carvers, it is not undone.
And here I am at the end of this talk with a response after all, because this is the fundamental condition of indigeneity. It is predicated on there being a settler, an invader to whom we must always respond. Yet I hope that I am also moving into a stage of inquiry guided by the needs, desires, arguments, critiques, and material lives of the people from whom I derive. In the next couple of years I will turn my attention to pipestone as an agent in Oceti Sakowin lives, one imposed upon by processes of colonization, but a subject that also preceded such things.
Acknowledgements: Thanks to the U.S. National Science Foundation (NSF), the University of California, Berkeley and the University of Texas, Austin (where I am a Donald D. Harrington Fellow in 2012-13) for funding support this year as I bring together the threads of multiple lines of inquiry. Thanks to David S. Edmunds for his always incisive editorial feedback and to Chris Andersen (UAlberta) for when I lose faith helping me see that what I know and need to write about is right in front of me. Finally, a big thanks to my colleagues and fellow panelists Joanna Radin (YaleU), Emma Kowal (UMelbourne), Tiffany Romain (Ricoh Innovations), Jennifer Brown (UPenn), and to discussants Jenny Reardon (UCSC) and Warwick Anderson (USydney) for our own productive social relations, and for having such fertile minds from which I can appropriate intellectual resources, transforming them into productive goods for the benefit of indigenous people.
 Joanna Radin, “Latent Life: Concepts and Practice of Human Tissue Preservation in the International Biological Program, 1964-1974," forthcoming, 32.
 Donna J. Haraway, 1991a. "A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century." In Simians, Cyborgs, and Women: the Reinvention of Nature. New York and London: Routledge: 149-181; Donna Haraway, 2000. “Morphing the Order: Flexible Strategies, Feminist Science studies, and Primate Revisions.” In Primate Encounters, edited by S. Strum and L. Fedigan, 398-420. Chicago: University of Chicago Press; Donna J. Haraway, 1991b. "Situated Knowledges: The Science Question in Feminism and the Privolege of Partial Perspective.” In Simians, Cyborgs, and Women: the Reinvention of Nature. New York and London: Routledge: 183-201; Sandra Harding. 2008. Sciences from Below: Feminisms, Postcolonialities, and Modernities. Durham and London: Duke University Press; Sandra Harding. 1991. Whose Science? Whose Knowledge?: Thinking from Women’s Lives. Ithaca, NY: Cornell University Press.
 Neferti X.M. Tadiar. 2001. “The Noranian Imaginary.” In Geopolitics of the Visible: Essays on Philippine Film Cultures, ed. Rolando B. Tolentino. Ateneo de Manila University Press: 61-76.
 Radin forthcoming 31.
 Radin forthcoming, 32.
 Radin forthcoming, 22.
 Cheryl I. Harris. 1993. “Whiteness as Property.” Harvard Law Review 8 (June): 1707-1791.
 Jenny Reardon and Kim TallBear. 2012. “Your DNA is Our History”: Genomics, Anthropology, and the Construction of Whiteness as Property.” Current Anthropology53(S5): S233-S245.
 Kowal 7, forthcoming.
 Mel Chen. 2012. Animacies: Biopolitics, Racial Mattering, and Queer Affect. Durham and London: Duke University Press.
 Kowal 29, forthcoming.
 Adapted from the story as told in the Pipestone: An Unbroken Legacy, DVD.
I've been remiss in blogging this summer in large part because I've been traveling around the country working on a new research project, "Indigenous Scientists and Cultures of Expertise and Tradition." I'm interviewing Native American bio-scientists, including graduate students, their non-Native collaborators, and other non-Native scientists who work in collaborative research with tribal and other indigenous communities. My hypothesis is that such individuals work in ways that may help democratize scientific research practices, in part by asking more diverse research questions that serve not only the needs of non-Native scientists and scientific institutions but also or primarily the intellectual and community developments needs of indigenous communities. I am also interested to see if such individuals come to influence the take-up of science and technology in tribal governance. If all goes well this year, in the next two years I'll interview scientists in Canada, New Zealand, and Australia. I'll present early findings at the American Anthropological Association's annual meeting in Montreal in November, where, by the way, my entire panel will be populated by Native American tribal citizens.
I also want to note a fantastic workshop I attended in July at the University of Illinois Institute for Genomic Biology. The Summer Internship for Native Americans in Genomics (SING) brought together established Native American scientists, graduate students in the bio- and social sciences, and community members from tribal and First Nations communities around the U.S. and Canada for one week of lectures, wet and dry lab training, and hands-on activities in ethical, legal, and social issues (ELSI) of genetic research. The ELSI activities were integral to the program and not simply tacked on as an afterthought to the "real" scientific training, as is too often the case. Students and faculty alike participated in vibrant discussions and role-playing in ways that also expanded the definition of "ethics" to include the idea that indigenous peoples are more than just potential research subjects who participate or resist accordingly. They can also be scientists. They are, of course, regulators, and tribal sovereignty in all of this is key. But they can also be funders of and investors in genetic research, thus shaping the questions that get asked; the methods that are used; and influencing whose institutions, communities, human resources, and economies get developed in research. The Navajo Times has just published an article on the workshop. I'll post a link here when when it's available online.
I did interviews in Minneapolis week before last. Boston is my next stop. Time to get up and out of this Janesville, Wisconsin Motel 6 and hit the road. I hope i can find some good coffee.
On October 9, 2010, I posted a blog entry (re-posted below) in which I respond with a mixed review to the Genographic/Seaconke Wampanoag jointly-authored publication "Genetic Heritage and Native Identity of the Seaconke Wampanoag" (Zhadanov et al 2010). In short, my thoughts were that Genographic's genetic data could undercut tribal identity and attendant political claims. The Seaconke Wampanoag who were sampled were shown to have almost no "Native American" genetic lineages. It remains to be seen what the Bureau of Indian Affairs (BIA) would do with such data. It could be damaging to a tribe looking for recognition from the U.S. government and its attendant rights and resources. However, I characterized the jointly-authored article as also a step forward for Genographic in that it simultaneously foreground non-genetic tribal histories. Scientific publications usually give short shrift to non-genetic knowledges. I have been very critical of Genographic elsewhere. In the interest of analytical fairness, I wanted to also acknowledge what the project did right. But this month, things have taken a turn for the worse in Genographic's relations with some of its indigenous subjects. My October 2010 post has been extensively referenced by the Peruvian organization Asociación ANDES in their comprehensive critique of the Genographic Project's now thwarted plans to sample Q'ero people, descendants of Incas, who live in a rural area of the Cusco Region of Peru.
Asociación ANDES raises important points in their communiqué that I'd like to highlight and cross-reference with the productive response of another body to the kind of "old school" research that Genographic is accused of. That is, research practices that are top-down, primarily extractive in that they benefit researchers, their institutions and economic networks while returning little or no intellectual or economic benefit to usually much less powerful research subjects. In addition, such research and how it conceptualizes history and personhood may directly assault indigenous conceptions of history and personhood that condition indigenous claims to self-governance and rights to land and resources. After all, is it not genetic and other biophysical data, non-indigenous historical narratives, and the moral frameworks of a scientific state that hold sway in dominant courts and institutions? Certainly, indigenous historical narratives, moral frameworks, and data (sometimes biophysical but also sometimes immaterial and not knowable by science) do not hold much sway.
Asociación ANDES accuses Genographic scientists of "neo-colonial" research. It's difficult to argue with the organization given the uneven benefits that accrue to those who research versus those who extend their arms to have their veins opened, or who part their lips to have the cotton swab inserted. The biological resources of such individuals are extracted so cleanly and quickly that it is sometimes difficult to see the political economic similarities between these procedures and the much messier extraction through the centuries of indigenous natural resources via minerals mining and land theft and development.
For those in doubt, let me substantiate the comparison between old and neo-colonialisms a bit more fully. As I summarize Asociación ANDES incisive points and relate them to another important document that I called attention to in yet another post, the Canadian Institutes for Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People. CIHR is the Canadian equivalent to our National Institutes of Health (NIH). Let me emphasize that the research problems highlighted by Asociación ANDES are the types of practices that are viewed as problematic and addressed by the CIHR guidelines. The guidelines help remedy the unsurprisingly colonial context of human subjects research that has always been entangled with and not separate from the colonial practices of nation states. A comparison with the CIHR guidelines shows that Asociación ANDES' critiques are not radical, but their ideas are increasingly recognized as fundamental to ethical research today. "Ethical" in a post-colonial era means also culturally competent, politically respectful, and mutually beneficial, as the CIHR guidelines attest to. Roderick R. McInnes, immediate past president of the American Society of Human Genetics (ASHG), in his presidential speech at the 2010 ASHG annual meeting, highlighted multiple principles that are consistent with Asociación ANDES call for ethical research.
Following, I paraphrase Asociación ANDES' critiques of Genographic. In bold, I paraphrase CIHR guidelines that address such problems:
10/17/11 Update: Since I originally wrote this blog entry, a colleague, an anthropologist of science who works in Latin America has translated for me the original letters between the Peruvian indigenous community leadership, the Cusco regional President, and National Geographic. These letters in Spanish are linked to in the May 6, 2011 ScienceInsider article that covered this story. The English translations, which are consistent with ANDES' analysis of the situation, will soon be available at the Web site Genomics, Governance, and Indigenous Peoples.
Roderick R. McInnes, ASHG Presidential Address: “Culture, the Silent Language Geneticists Must Learn to Speak”
Roderick R. McInnes
I first wrote the blog entry below last November, a reaction to an important address given November 3, 2010 at the American Society for Human Genetics (ASHG) by outgoing president, Rod McInnes of McGill University. President McInnes's address, Culture: the Silent Language Geneticists Must Learn--Genetic Research with Indigenous Populations, was published in the March issue of The American Journal of Human Genetics 88, 254-261, March 11, 2011.
You can see the first ten minutes of President McInnes's address here on YouTube. Or you can go to the ASHG Web site and pay to view the entire address. Unless you were at the meeting. You should then have been sent login information.
11/03/2010 (original post date)
I am here at the American Society of Human Genetics (ASHG) annual meeting in Washington D.C. for the much anticipated (in my corner of the world) Presidential Address by outgoing society president, Roderick R. McInnes (McGill University, Canada).
Before sharing some of the exciting highlights of that speech . . . Whoa, the ASHG exhibit hall C is kitted out like a Las Vegas show, or one of those glitzy evangelical mega-churches that have risen up in U.S. American culture since the 1980s. Except these performances are subdued and precise. No instruments or singers. (Although Prez McInnes cracked some good jokes depicting the differences between U.S. Americans and Canadians.) Audience members created a nice low murmur fitting for the dimly lit cavernous convention hall. Blue and teal cloth draped from on high to the floor with huge ASHG logo and artsy looking double helix to backlight the plenary session stage. Gigantic overhead screens run advertisements for upcoming academic and industry meetings, and eventually show the speakers' slides. There is seating for maybe a couple thousand in here. All of this and yet no wireless. Tweet plans disrupted.
While Dr. McInnes speaks of the language of "culture," I think "distributive justice" and more "democratic science," but our sense of the details and recommended changes to research ethics--which are well under way in some quarters--seems shared. Before recounting just the highlights of his talk (he'll publish it in an upcoming issue of the American Journal of Human Genetics--AJHG). I want to thank him again for taking on this topic, and for taking it up so seriously. Pressure has been mounting for years from indigenous critics of genetic research, but meaningful change will also have to come from within the field. Judging by McInnes' citations and they synthetic nature of his account, he reads considerably outside of his specialty areas, delving into cultural anthropology, law, and genome ethics and policy. He put together a coherent narrative for non-specialists in genetic research ethics of why the time is now, as he put it, for genetics researchers to "get inside the metaphorical tent of the indigenous populations" they study.
After cautioning the audience that we should be hesitant to judge earlier genetic studies of indigenous populations by today's ethical standards (heads nodding all around me), McInnes provided highlights of genetic research on indigenous groups contested by those people--i.e. on the Nuu-chah-nulth Tribe from Vancouver Island, Canada and the Havasupai Tribe in Arizona. In these two cases consent was obtained and blood drawn for biomedical research but later used for human migrations research and, in the case of the Havasupai, additional stigmatizing biomedical research unwanted by the tribe was funded. McInnes also noted the smaller controversy that surrounded the Genographic Project's blood draws in Alaska in which researchers were asked to return DNA samples until concerns about inadequate informed consent were rectified.
McInnes highlighted different indigenous cultural beliefs about DNA--some think it is sacred. As late Hopi geneticist Frank Dukepoo put it, "it is part of the essence of a person." Genetics findings may also displant the origin narratives of indigenous peoples (and, I would add, key events in colonial history). If I can expand beyond what Dr. McInnes said, such narratives give indigenous peoples values for living, narrate our common history, cohere us as peoples with common moral frameworks, and tie us to sacred land bases. Both creation and colonial narratives circumscribe our geography, family relations, governance, and identity. Genetic knowledge, fascinating as it is, should not trump these weighty factors.
Beyond “cultural” concerns, McInnes highlighted the imperative to constitute research benefits and outcomes in broader terms. And then researchers need to pay attention to how indigenous peoples and not only researchers also accrue those benefits. Citing the Estonian Genome Project, McInnes noted the types of benefits that communities in that country expect to receive from that research, e.g. better healthcare, better healthcare delivery, technology development, economic development, and jobs. “Why,” he asked, “should aboriginal populations expect less?” Touché.
Importantly, McInnes called attention to the need for researchers to respect aboriginal jurisdiction of genetic research on their peoples. He paraphrased Deborah Harry of the Indigenous Peoples Council on Biocolonialism (IPCB)--that indigenous peoples are not so much anti-research as they are pro-indigenous rights. Illustrating that some research communities are ahead of others on these fronts he gave us the lowdown on the Canadian Institutes for Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People. CIHR is the Canadian equivalent to our National Institutes of Health--NIH. A few of the highlights of those guidelines:
1. Researchers should understand and respect Aboriginal world views.
2. Researchers should agree to Aboriginal jurisdiction.
3. Communities should be given the option of a participatory research approach.
4. Community consent plus individual consent.
5. DNA is "on loan" to researchers until its return is requested. All secondary uses must be re-consented. (McInnes cited Canadian geneticist Laura Arbour's work and approach to collaborative research throughout the talk. For those of you unfamiliar with her work, check out her "DNA on Loan" article.)
6. Pre-submission community review of publishable papers. (Key point: this review is not to block research findings from being published but to contextualize findings and correct any inaccuracies. This can help avoid stigmatization and other problems. See my Genographic/Seaconke Wampanoag entry for more on how indigenous review/input into publications makes papers more rather than less rigorous.
7. Intellectual property benefits, education, and capacity building in research process should be addressed in a research agreement.
There is a lot more in the CIHR guidelines. What is more, they are in line with changes to research approaches advocated by indigenous critics for years now south of the Canadian border. Check back again. When it’s available, I’ll provide a link to Roderick McInnes’ published address in the AJHG. He also made some interesting points about lessons learned from research on indigenous populations being applied to genetics research ethics with communities more broadly.
is associate professor in the Faculty of Native Studies at the University of Alberta. I tweet about science, technology, environment, indigenous cultures, and governance @ http://twitter.com/KimTallBear. Reach me at firstname.lastname@example.org