7 The Genomics of Difference and the Politics of Race in Canada
Developments in understanding and analyzing human genomic variation with regard to health and disease have reignited concerns, especially in the United States, about the rebiologization of race. As noted by Joan Fujimura et al. (2008, 644), “in the context of American race politics, folk-understandings of race, and the history of racist scientific investigations in the United States, it is not surprising that members of the media and other public groups have read the genetics of difference as the genetics of race.” Yet what has been less discussed is whether the “genetics of difference,” spawned from research on human genomic variation, have been read as the “genetics of race” in other contexts. In an article exploring the relationships between race, genomics, and identity in contemporary Brazil, Ricardo Ventura Santos (2004, 364) points out that although human genomic variation projects may be similar insofar as they address genomic difference, there may be significant distinctions between these projects from “the point of view of geography, the populations involved, the ethical clashes, the scope of the explanations (local, national and international) or reception by society.” This chapter, then, seeks to push this point in relation to exploring how the categories of race, ethnicity, and population feature and are used in Canadian research projects addressing human genomic variation.
When considering the impacts and developments of human genomic variation studies outside of the United States, one needs to be attentive to any unmediated exportation of U.S. racial politics and technologies, which can sometimes pose categories and experiences as universal, rather than as part of specific historical or contextual developments. In other words, I am wary of the explanation or assumption that race is the primary category of concern in biomedical genomics research. The chapter thus seeks to make two interrelated points. First, sustained attention needs to be given toward how different nations draw on and reject, often simultaneously, aspects of their colonial histories in forming a contemporary approach to health and difference in the life sciences. While the race and genomics debate in the United States does indeed reflect where the majority of research on human genomic variation in relation to health and disease is occurring, it should not necessarily be cast as the dominant frame for understanding and evaluating human genomic diversity. Second, in drawing distinctions between the United States and Canada, the contrast I want to draw out is not one of biracial versus multicultural/ethnic pluralism; rather, I aim to demonstrate that both countries manage heterogeneity through selective discourses of mixing and homogeneity.
The overall goal of the essay is to bring sustained attention toward how different nations contend with the legacy and continuing aspects of their colonial histories as a condition of their transition to postcolonial or multicultural societies, in which governing is increasingly becoming linked to the life sciences. Specifically, the chapter traces how racialized histories have come to shape the politics of inclusion in contemporary population genomics projects in Canada. The main focus is on two areas of genomics practice: a Genome Canada–funded biobank announced in 2007, and a proposal for the inclusion of aboriginal communities as part of Canada’s national genomics research strategy. Both examples emphasize how representations and narratives of founding populations, nation building, and genetic difference are explicitly rooted in the colonial histories of Canada. The outcome of Canada’s national genomics strategy, as reflected in the establishment of Genome Canada and other related institutions, may have considerable impacts on population-specific health interventions in the realms of public policy, health care, and biomedical regulation. The chapter draws on interviews with Canadian scientists, bioethicists, and project managers, along with the analysis of recruitment documents and communication strategies. The two examples discussed in this chapter are part of a larger research project that explores the current manifestations of Canada’s multiculturalism in light of the molecularization of biology.1
Placing Canada in a Postsequence World
With the mapping of the human genome, we have been given quite literally, the language of life itself…. In terms of genomics-based medicine, knowing who we are will cure us.
—Genome Canada (2008)
In 2000, the Canadian government launched a concerted funding effort to establish Genome Canada. Dedicated to developing and implementing a national strategy in genomics research “for the benefit of all Canadians,” Genome Canada invests and manages large-scale genomics research projects relating to agriculture, fisheries, forestry, the environment, human health, and new technology development (Genome Canada 2007–2008, 12). In its relatively short history, Genome Canada has funded a wide range of diverse genomics- and proteomics-related research. As explained in its annual reports, Genome Canada seeks both to respond to the national interests of Canadians (helping Canadians “reap the benefits of genomic research”) and to strengthen its international collaborations with other genomics-based research bodies (Genome Canada 2007–2008, 10). Genome Canada is not part of the formal state structure; however, the bulk of its funding comes from governmental sources, and it delivers devolved governmental responsibilities relating to Canada’s research and development industry. It relies on fixed-term research grants from the Canadian government, but like other research organizations created through similar structures, it is not directly accountable to ministers or parliament (e.g., Genome Canada cannot be queried through any freedom of information legislation, unlike other public bodies in Canada).2 The founding of Genome Canada was part of a broader governmental objective often referred to as Canada’s national innovation strategy, which also led to the creation of the Canadian Institutes for Health Research and the Canadian Foundation for Innovation, among other research foundations.
The following provides a brief sketch of Genome Canada’s institutional structures to highlight how Genome Canada fits into Canada’s overall biostrategy as it relates to genomics-based biomedicine. Specifically, Genome Canada–funded projects in human genomic variation and health are highlighted as they relate to pharmaceutical development, medical research, commercial investment, and national politics in Canada. The recent merging of genomic technologies and health care networks in Canada has contributed to establishing population genomics projects as part of an integrated aspect of health policies and approaches. The outcomes of these various projects may significantly impact particular population groups, for example, by establishing health interventions for certain ethnic, regional, or cultural groups in Canada.
The recent establishment of Genome Canada reflects the changing priorities of Canada’s overall national science and technology strategy. Indeed, Canada has not always been at the forefront of genomics research. In 1998, the Canadian Biotechnology Advisory Committee3 reported back to the Canadian government on its genomics research programs (Government Canada 1998, 8) stating that
the reduction in Canada’s genome program has not only hollowed out the country’s existing capacity, but has jeopardized the chances of Canada leading the next wave of postgenomic studies. Canadians have major international strengths in areas that give them the potential to become world leaders. Yet, owing to the lack of resources, Canada stands to lose out on the commercialization of agricultural, medical, silvicultural and aquacultural discoveries of the 21st century.
Canada missed out on the Human Genome Project because the Canadian government did not put forward the fifty million U.S. dollars required to participate (Campbell 2002, 59). Thus, in 2000, not wanting to lose out on the promises of a postsequence world, the Canadian government announced new funding and a new strategy for genomics research. As reported at the time, the plan was to create an organization “unique to Canada, dubbed Genome Canada that will enable Canadian researchers to sequence the DNA of plants, animals and humans without having to do it abroad” (Brown 2000, 1478). Initially, this investment in genomics was presented as part of catching up to the international community (Racine 2006, 1279). Genome Canada, then, emerged from the “culmination of three years’ work by Canadian players in the biomedical research funding, biotechnology, genetics and resource industries” (Brown 2000, 1478).
Genome Canada’s 2007–2008 corporate plan describes Genome Canada as a “not for profit corporation.” The report goes on to describe Genome Canada’s “innovative business model” as one that “is built on the premise of funding and managing large-scale and multidisciplinary research projects and platforms…. [It] brings together industry, governments, universities, research hospitals and the public in support of large-scale projects of strategic importance” (Genome Canada 2007–2008, 3). The president and CEO of Genome Canada suggests that Genome Canada is actually set up like a private-sector company, with its own fourteen-member board of directors, stating that “the lead investor is Industry Canada” (Campbell 2002, 59). The goal of Industry Canada is to promote conditions for investment in Canada and to increase Canada’s share of global trade (Industry Canada 2007). As of 2007, Genome Canada has received 840 million dollars from the federal government (through Industry Canada). When combined with other sources of funding (both provincial and private), the investments total 1.4 billion dollars for 115 large-scale research programs and platforms (Genome Canada 2007–2008, 3). It should be noted that while Genome Canada funds genomics research, it argues that it does not necessarily initiate, foster, or encourage research activity in any one area. In other words, “Genome Canada does not do research, but funds research as recommended through a very stringent international peer review process” (interview, program manager, Genome Canada). Genome Canada funds an extremely heterogeneous group of researchers and scientists, all of which require cofunding from other sources to receive Genome Canada support.4
One major area of Genome Canada funding is dedicated to human health research. As the quote that opens this section states, “we have been given the language of life itself,” and “in terms of genomics based medicine knowing who we are will cure us.” One of the significant aspects of this quote is the ambiguity surrounding whether there is just one us, or whether there are many. The increasing emphasis on human genomic variation as the key to unlocking the promises of genomics-based biomedicine suggests that there may, in fact, be many. Indeed, Genome Canada funds a variety of projects that are seeking to harness these promises of a genomics-based biomedicine. These span studies that target complex and common diseases (such as diabetes), the analysis of structural and functional human genome variation, pharmacogenomic studies, and programs looking at rare or single-gene disorders.
Genomics-based biomedicine has been heralded as potentially able to deliver solutions to complex and common disorders and diseases. Yet, as noted by many genomic researchers and commentators, the “language of life itself” has been notoriously difficult to decipher and apply clinically. Beneath the assertion that knowing who we are will cure us, then, lies a range of tensions, anxieties, and hopes that are characteristic of emergent technologies such as genomics (Fortun 2005). More specifically, though, the assertion of knowing who we are to cure us points toward the continuing unification of human genomic variation and health as a focus for pharmaceutical development, medical research, and commercial investment in Canada. The advancements and developments relating to understandings of human genomic diversity in the field of population genomics are singled out in the 2007–2008 Genome Canada report. The introductory message from Genome Canada’s CEO (Genome Canada 2007–2008, 3) exclaims,
Science magazine called it the “breakthrough of the year” in December 2007: the discovery of just how varied the human genome truly is, from population to population and person to person. It was a long time in the making, as most genomics discoveries are…. Canadians should be proud of the contributions their scientists made to this discovery—scientists such as those involved in the Canadian component of the HapMap Project.
Contributing to its recently established genomics strategy, Canada also has a universal health care system, which facilitates patient definition and identification, along with the existence of already well-established medical genetics research communities. These two aspects aid in both provincial and federal health-related projects that require the collection of clinical cohorts and the biobanking of tissue samples and cell lines. Furthermore, Genome Canada’s network of regional centers is building expertise and specialties in population genomics (with recent initiatives such as CARTaGENE and Public Population Project in Genomics, P3G). The merging of genomic technologies and health care networks in Canada to establish population genomics projects as part of an integrated aspect of the health care system will no doubt impact the future of medical treatment and health policy implementation. The outcome of Canada’s national genomics strategy may therefore have significant impacts for particular population groups, including health interventions for certain ethnic and cultural groups at the levels of public policy, the health care industry, and biomedical regulation.
The Use of Race in Canada
Though Canada shares geographical, economic, and political proximities with the United States, it also has distinct institutional structures, political categorizations, and rhetoric that contribute to shaping discourses of the genetics of difference. This is not to argue that Canada is exempt from the histories, processes, and politics of racialization; rather, I would propose that being attentive to the genetics of difference requires attention to specific national genealogies of citizenship and their racialized histories. These, of course, do not start and stop with the borders of the nation-state, but they often have particular local significance within the legal, institutional, and economic structures within the nation.
The word race, for example, cannot be found on a Canadian census form. The institutionalization of categories of difference in Canada, then, has been different from that of the United States. Census categories are important in the study of population genomics projects as these categories are often imported, or versions of them may be used in clinical recruitments (Epstein 2007), biobanking (Tutton 2007a; Smart et al. 2008), and other human genomic variation projects; however, as opposed to the only two ethnicities that the U.S. census records (Hispanic/not Hispanic), Canada recorded more than two hundred different ethnicities in its 2006 census (in contrast to the twenty-five different ethnic groups that were recorded in the 1901 census; Statistics Canada 2008a). This is not just an issue of semantics. What and who gets recorded in the Canadian census is the outcome of multiple political processes that are simultaneously a reflection of reprehensible racial histories but also a reflection of the demands of identity-based groups and the politics of recognition and inclusion.
Some interviewees, bioethicists particularly, argued that they did not see race as a problem in Canada, but that issues of cultural and ethnic pluralism were more significant. As one of my interviewees explained when we were discussing potential problems about the reinscription of racial categories in human health genomics,
I don’t think race has become a big issue. Well, in Canada we don’t use the word race, we would talk about ethnic communities. (interview, Canadian bioethicist 1)
Another interviewee thought that, as a result of its cultural pluralism, Canada may have an easier time integrating racial or ethnic categories into health-related genomics:
It’s a very touchy subject, though it’s a less touchy debate here than in the U.S. We have more of a pluralistic set of cultures and are not so dichotomous as the U.S. I think it will become easier as we move into more integrated health projects, which we really haven’t had any of yet. (interview, Canadian bioethicist 2)
Canada is engaged in large-scale population genomics research projects, which rarely use the word race; rather, terms such as ethnic communities, isolated populations, human diversity, cultural mosaic, and founder populations are increasingly being relied on and expressed in discussions of human genomic difference. Debates about the use of race in genomics need to address, then, not only how the word race translates across national boundaries, intertwining itself with national histories, but also the ways in which ideas of difference and inclusion are rendered in Canadian discourses of multiculturalism. This point is also made by Steven Epstein (2007) in his consideration of how U.S.-style categories and policies of inclusion in biomedicine may be exported to other nations through transnational circuits, particularly Canada. To explore the competing interests at stake in the debates on race and genomics, attention needs to be given to how racial differences are being recodified through the molecular gaze of genomics, and also how ideas of racial difference have been supplanted and reworked in different national contexts.
Teasing out the intersections between Canada’s genomics research strategy and categories of race, ethnicity, and population requires looking specifically at the nation-state and how national political struggles shape both biomedical and social policies in Canada. In this regard, contemporary national imaginaries in Canada may be seen to be characterized by a confrontation with American nationhood, the ambiguities of recognizing the distinctiveness of Quebec, and an emphasis on multiculturalism as an official policy since the early 1970s (Winter 2007). Awareness should also be paid to the contemporary politics of difference in Canada, which separate visible minorities, or ethnic communities, and aboriginal peoples.5 Statistics Canada (2008b, 2), which conducts the Canadian census, defines the concept of visible minority as applying
to persons who are identified according to the Employment Equity Act as being non-Caucasian in race or non-white in colour. Under the Act, Aboriginal persons are not considered to be members of visible minority groups.6
Aboriginal politics occupy a distinct area of difference politics in Canada that emphasizes aspects of sovereignty, nationhood, and territory not found in political discourses of visible minorities. Created in 1995, the term visible minority has been called a Canadian invention, though it is infrequently applied in the United Kingdom (Kinsella 2007). The term is used in the Canadian census and as a marker to trace, for example, marginalized populations’ access to health care. In this instance, the creation of this national classification (visible minority) was sought to function as a strategy of inclusion and equality. This cursory review of categories of difference outlined here cannot engage with the more substantive aspects they bring up (e.g., what the status of visible minority is in population genomics projects), and I review them here to highlight differences between Canada and other nations as well as the intricacies of racialized classification within Canada.
Attention to how categories of difference become institutionalized and their histories are significant for considering the transnational aspects of population genomics and how the findings of these projects may be applied to particular populations within different nations. Many nations, such as India, Mexico, and South Africa, along with Canada, are developing their own genomic variation initiatives to explore the relationship between population variance and disease predisposition, diagnosis, and drug response (Segiun et al. 2008). Similar to Canada’s own national genomics strategy, these projects seek to harness genomics for the benefit of their populations, with the hope of developing diagnostics and therapeutics to address health and disease. Yet an integral part of these projects requires the mapping and recording of a nation’s own local populations, bringing into question just what “local” means in human health genomics research—as it is hoped that both genomic diversity and homogeneity will provide some answers and clues to delivering the promises of genomics-based biomedicine. Within national contexts, then, genomic approaches to race, ethnicity, and populations are increasingly informing and traversing social and political approaches to these categories. In light of these transnational circuits and the global aspects of major population genomic research projects, the task should not just be to consider how race may be used in these projects, but to connect these disparate biosocialtities (Rabinow 1996; Gibbon and Novas 2008), rooted in diverse histories, which employ multiple understandings of race, ethnicity, and populations.
Genetic Portraits
With increasing frequency, national imaginaries are harnessed as part of preparation for the era of genomics-based medicine (Pálsson and Rabinow 1999; Sunder Rajan 2006). Genome Canada recently announced its support of one of Canada’s first major biobanks, CARTaGENE. Financed mainly by Genome Canada and Genome Quebec, CARTaGENE aims to produce a genetic portrait of the Quebec population (Langlois 2007). Described as a “large-scale, public resource genetic database conceived to improve our understandings of the role played by genetic health issues,” the CARTaGENE project collects sociodemographic and health assessment data, biological material, and DNA samples from citizens of Quebec, aged forty to sixty-nine, through a random sampling from four metropolitan census areas (Godard et al. 2007, 147). Like other current biobanks (such as the UK Biobank), emphasis is put on understanding the influence of genetic heritage as well as gene-environment interactions and the study of common complex diseases such as cancer and diabetes. In March 2008, CARTaGENE completed its first small-scale recruitment of 223 participants and is now embarking on the first major recruitment phase of the project (twenty thousand participants).7
The following discussion examines the politics of inclusion relating to the recruitment campaigns and communication strategies of the biobank. As CARTaGENE is a publicly funded project, there has been a significant amount of research addressing ethical aspects of the biobank on issues of public trust, consent, governance, and transparency (Godard et al. 2007; Wallace et al. 2008). My approach differs in that my interest is to attend to the wider political and historical contexts to explore how categories of race, ethnicity, and populations are mobilized by the project. This includes looking at wider racial and ethnic discourses in Quebec and how genomic diversity becomes mobilized on the grounds of health and deferred at the threat of perceived stigmatization.
CARTaGENE has been described as a mapping exercise integral to the health of the nation (Government Canada 2004, 4):
CARTaGENE is cartography of genetic diversity in the Quebec population. The project will map genetic variation in a large reference population of Quebec. This information will allow large-scale medical, pharmacogenomic and public health studies, including association studies of common diseases or “protective” phenotypes, and lead to the discovery of new susceptibility genes.
Media coverage of the CARTaGENE project has highlighted genomic diversity and the value of diverse populations as an important aspect of the biobank. One article (Cardwell 2003, 45) suggested, “Given the diversity of Quebec’s population (there are about two dozen ethnic groups in Montreal alone), they say it could also be used to pinpoint the genetic origins of complex illnesses such as heart disease and mental health.” However, in regard to concerns about perceived stigmatization on the basis of race, the organizers of CARTaGENE (Lévesque 2007b, 3–4) argue that the population database is not about race, or any form of difference, for that matter; rather, it is about health:
CARTaGENE will not be used for anthropological, ethno biological or other types of research dealing with ideologies and race. CARTaGENE is first, foremost and exclusively dedicated to health research. However CARTaGENE avoids the use of the negative form whenever possible in order to avoid the arousing of certain sensitive subjects.
Lévesque adds in a footnote, “This is also why CARTaGENE does not openly mention risks of stigmatization.” Here genomic diversity becomes mobilized on the grounds of health and deferred at the threat of perceived stigmatization. The disclaimer itself (that the project will not deal with race) suggests that race is important insofar as it is kept separate from the project so as not to arouse “certain sensitive subjects” (though these are not explicitly articulated). Similar disclaimers have been made by previous population genomics projects such as the Human Genome Diversity Project and the International Haplotype Map (HapMap) Project (M’charek 2005; Reardon 2005, 2007).
The recruitment and communication strategy documents for CARTaGENE, from which the preceding quote is taken, offer insight into how institutions are reflexively engaging with the competing discourses of difference that population genomics projects elicit. For example, the first goal in the brainstorming session for the biobank’s public theme was to put it in harmony with its recruitment campaign objective and offer the public “something catchy” (Lévesque 2007a, 1). This catchy teaser for the public is “CARTaGENE—The world within you” (Lévesque 2007a, 1). Drawing very much on a discourse of overcoming distance and difference, a report on developing a public theme for CARTaGENE explains the rationale for the slogan “the world within you” in four points:
1. Everyone has within oneself a part that is common to the rest of humanity: the genome. It is a complex part that is still to be discovered;
2. The theme opens up to the future and to others. It is directed toward what we have in common, not toward our differences. It is gathering and it awakens curiosity as well;
3. The theme reminds us that everyone can significantly contribute to a project like CARTaGENE;
4. Finally, “the world” reminds scientists of the “-omics” sciences, a Greek root they use to signify totality.
(Lévesque 2007a, 2)
There is particular emphasis here on how distances are transcended through the global genome (it is the world within you). Placed within the wider historical and political contexts of genetic research in Quebec, this emphasis on the “world within you” is significant. As was relayed to me by an interviewee, one of the things that makes Quebec unique is that it is possible to trace the founding populations of Quebec to the last detail (as opposed to creating a genetic map of Saskatchewan or British Columbia; interview, Canadian population geneticist 1). The descendants of about eighty-five hundred French settlers who arrived in Canada between 1608 and 1759 are said to have remained isolated and “reproduced wildly,” which created a “genetic bottleneck” ideal for genomic research (Secko 2008). The migrations of these settlers and their descendents have led to a series of regional founder effects reflected in the geographical distribution of genetic diseases. In this explanation, the very fact that descendents of the Quebec founder population do not have the world within them makes them a desirable group with which to conduct genetic and genomic studies. However, the story of the French founder population is itself a very specific colonial story that effectively silences the complex set of both intimate and political relationships between the original inhabitants of Canada and colonial settlers. Nina Kohli-Laven’s (2007–2008, 6) work in this area demonstrates that as a result, some Canadian researchers “have effectively overlooked the presence of non-Europeans in North American population histories, impacting the basic assumptions of subsequent genetic epidemiological studies.”
Despite this, the homogenous genomes of the Quebec founder populations feature heavily within the wider population genomics-based research being carried out in Quebec. In 2007, a genomewide association study (GWAS), conducted by a private company that has been referred to as the “deCODE of Quebec” (Davies 2008), identified multiple genes underlying Crohn’s disease in the Quebec founder populations (Raelson et al. 2007). GWAS are seen to offer a powerful method for identifying disease susceptibility for common diseases such as cancer and diabetes and are at the cutting edge of genomics-based biomedicine.8 However, the value of the genetic homogeneity offered by French founder populations in Quebec for GWAS and the future commercial development of diagnostics and therapeutics is seen to be under threat. GWAS researchers in Quebec have suggested that the genetic uniqueness of these groups may “be lost in the next few generations” because “Quebec is becoming highly multiethnic, and intermarriage between different groups is becoming more and more common” (Secko 2008, 38). Citing Canadian census data, the same article goes on to explain that it is becoming difficult to find recruits for GWAS because “interracial marriages have increased more than 30% from 2001 to 2006” and “visible minorities (many of whom are new immigrants) also rose more than 30% during the same period” (Secko 2008, 38).
The political discourses of multiculturalism in a molecular era are drawn into sharp relief when the CARTaGENE project is located within broader debates about difference in Canada. The changing demographics of Quebec as an increasingly multicultural society have also been recognized by the CARTaGENE project. For example, the findings from its first community engagement projects to gauge public perception and response to the biobank contain a section dedicated to “The Impact of Cultural, Ethnic and Linguistic Groups on Receptivity to the CARTaGENE Project,” which included “Arabic, English, French, Greek, Hispanic, Italian, Jewish” groups (Godard et al. 2007, 150). Yet there was little discussion of why consulting different cultural, linguistic and ethnic groups may matter, not only in terms of how they can contribute to the practical success of the biobank, but also in terms of how their inclusion in the biobank may alter or change a genetic portrait of Quebec. Though consulting different cultural and ethnic groups about how they perceive the biobank may reflect the increasing use of institutionalized multiculturalism as a strategy of bioethical expertise in the life sciences, what is less clear is how these groups’ genomic inclusion (through biological samples and DNA) might impact the formation of genomic portraits and the kinds of genomic studies that may be performed from the data collected by the project.
Cultural Mosaics
In 2006, Genome Canada invited genomics and proteomics researchers to nominate strategic research themes by first submitting expressions of interest (EOIs), which, if supported, would develop into position papers and research streams. The EOIs would be commented on by the larger Canadian genomics community through interactive Web postings and would be adjudicated on by a committee of international experts. One EOI submitted for the adjudication process explicitly addressed aspects of cultural and ethnic diversity. Titled “Promising Practices and Emerging Culturally Appropriate Frameworks: Aboriginal Perspectives, Voice and Presence in Genomics in Canada,” this EOI (Genome Canada 2006) argued that genomics research within Canada needed to recognize and consider aboriginal peoples. It stated the following:
Aboriginal peoples in Canada are a diverse entity within the Canadian mosaic…. As a people they offer unique perspectives, knowledge, experiences, and developments that will potentially inform and challenge conventional approaches to genomics and proteomics…. Aboriginal people constitute a significant population group … with consumer, collaborator and contributor potentials that cannot be ignored.
This EOI was not successful in Genome Canada’s competition scheme, yet it raises the issue of how aboriginal communities are included within increasingly institutionalized genomics-based biomedical research. The EOI describes aboriginal groups as a “diverse entity” with “consumer, collaborator and contributor potentials” in genomics. This points to a tension where, on one hand, there is a need for a multicultural science, here translated as “culturally appropriate frameworks,” and on the other, the ethnically and culturally distinct biological body seen as a site for increasing genomic knowledge. With regard to contributing to genomics, the EOI highlights two distinct yet interrelated ideas of inclusion. Aboriginal communities may contribute to genomics-based biomedical research through different epistemologies of science and different articulations of relationships to nature, according to the EOI, through challenging “conventional approaches to genomics.” Yet they may also contribute (and collaborate) with genomic research through the knowledge produced from the tissue and other biological samples from aboriginal communities and individuals, which have been used to do genealogical, genetic, and epidemiological research.
These distinctions come into sharper relief when we look at the only independent source of support posted for the EOI, written by a Canadian genetic scientist, who made the following comment (Genome Canada 2006, 1):
Our studies in aboriginal health indicate clear differences in the genetics of the immune system between aboriginal and Caucasian populations. Attempting to interpret how these genetic differences translate into differences in actual immune function that might impact disease outcomes has been more challenging. We have found limitations in interpreting genetic data from aboriginal subjects according to SNP outcomes originally defined in Caucasian populations. Completing functional readouts in future genetic studies on aboriginals or any other population should be an important aspect in extrapolating meaning from genetic data.
Here the support for the multicultural scientific approach proposed by the EOI is based on genetic differences. The imperative is not only to take into account the cultural diversity of aboriginal peoples in Canada, but also to seriously consider the limitations of interpreting genetic data, which was originally done in, what the genetic scientist calls Caucasian populations. This does not necessarily imply that there are hard and fast distinctions between the population groups, but rather, that research needs to be done to assess extrapolating genetic data from Caucasian populations onto aboriginal population groups. However, in Canada, there has not been the same interest expressed through dedicated genomics projects targeting indigenous populations as there has been in other countries. Other nations, for example, have made concerted funding efforts to map indigenous populations, such as in Mexico, where the Mexican HapMap, sponsored by the Mexican National Institute of Genomic Medicine, mapped genomic variation in admixed and indigenous groups not included in the International HapMap Project (Schwartz-Marín 2008). While there has been no nationalized effort to genomically map aboriginal populations in Canada, increasing attention is being paid toward the distinctiveness of aboriginal communities in Canada and their inclusion in genomics-based biomedicine.
In 2007, Canada’s main funding agency for health research, the Canadian Institutes of Health Research (CIHR), adopted new guidelines for health studies involving aboriginal peoples to “conduct ethical and culturally competent research that balances the pursuit of scientific excellence with Aboriginal values and traditions” (see Canadian Institutes of Health Research 2007b). These guidelines are not legally binding, but researchers who receive funds from the CIHR are required to follow them. The CIHR guidelines were drafted largely in response to the collection of biological samples that were used for research not consented to by aboriginal donors and communities.9 To redress these cases, the CIHR, over many years of consultation with aboriginal groups and researchers, established these new guidelines. Perhaps one of the most significant aspects of the guidelines regards the concept of “DNA on loan,” which suggests that “biological samples should be considered ‘on loan’ to the researcher unless otherwise specified in the research agreement” (Canadian Institutes of Health Research 2007b, 25). The guidelines further explain that the concept of DNA on loan “reflects Aboriginal philosophies regarding ‘full embodiment,’ in which it is held that every part and product of the body is sacred, and constitutes an essential part of the person” (Canadian Institutes of Health Research 2007b, 25).
Increasingly, aboriginal communities in Canada are establishing their own community-based review committees to establish biomedical research guidelines that incorporate versions of aboriginal philosophies on embodiment (such as DNA on loan). Clinical geneticist Laura Arbour notes that examples of successful approaches to biomedical and genetic research do exist between aboriginal communities and researchers “but do not get the same degree of attention as when research goes wrong” (Arbour and Cook 2006, 5). One of my interviewees, who conducted genetics research on diabetes in Canadian aboriginal communities, emphasized the positive research relationship he experienced:
Fortunately, the communities and subpopulations with whom I have worked with over the years have been extremely pro-active—to the point of actually initiating the research and mobilizing the assistance of university and academic research teams. There has to be an obvious benefit for the communities. Our experience with aboriginal communities has been similar: we have relied on their self-definition as a distinct community or population. (interview, Canadian population geneticist 2)
This emphasis on self-definition and being pro-active resonates with contemporary theorizations of what has been called genetic citizenship (Heath et al. 2004), biological citizenship (Rose and Novas 2005), and biopolitical citizenship (Epstein 2007). Rose and Novas (2005, 3) emphasize how biological citizenship helps to think through “the increasing importance of corporeality to practices of identity.” The recent proposals and guidelines for the inclusion of aboriginal groups and individuals in genomics-based biomedicine explored in this section suggest that versions of inclusion rely on various levels of corporeal understanding (i.e., the body as sacred, the body as a source of genomic difference that needs to be accounted for). The contested and complex histories between aboriginal communities and the Canadian state with regard to citizenship (which cannot be fully addressed in this chapter) demonstrate, however, that the connection between corporeality and practices of identity is not straightforward, as who gets to count as part of a population or distinct community is far from self-evident. Emphasizing this point requires a brief but important historical detour.
The predefinition of (bio)political groups is a key issue of the regulation and recognition of aboriginal or “Indian” identity in Canada. Through regulatory systems such as Canada’s Indian Act, if one is a “registered Indian” or “status Indian,” one is accorded very different rights and resources than those deemed “nonstatus Indians.” Until 1983, under the Indian Act, if an Indian woman married a white man, she was dispossessed of her Indian status under the act (as were her children); however, if a white woman married an Indian man, she gained state-recognized Indian status and the rights and resources that went with that. Despite the fact that these divisions and regulations were imposed and created in an artificial manner, these markers of identity and citizenship have become very real in experiences of nativeness (Lawrence 2003). These local aspects of exclusionary citizenship, which characterize settler colonies, such as Canada, need to be brought to bear on population genomics-based biomedical research. This is because they may not only have impacts, at the level of recruitment, on clinical and genetic studies that require certain familial genealogies, but they may also impact who gets to count as part of the aboriginal community in Canada.
Considering how race comes to matter in the politics of inclusion in Canada’s genomics strategy with regard to aboriginal communities is further complicated by a distinct separation from discourses of race within aboriginal politics. The following quote from one of the seven commissioners from Canada’s Royal Commission on Aboriginal Peoples (Chartrand 2002) explains why it may be wholly inappropriate to employ discourses of race in aboriginal politics:
One device to dismember the communities and to hide the true basis for Aboriginal group rights, has been the discredited notion of “race” which aims to describe all Aboriginal people as a single homogenous mass of individuals rather than as communities united by historical relations to place.
In this regard, many aboriginal groups in Canada argue that they do not want to be raced, and furthermore, that race has nothing to do with aboriginal claims to self-government and self-determination, which are rooted in national sovereignty, aboriginal nationhood, and territory. These distinctions are significant, particularly for building any analysis of the politics of race, ethnicity, and populations in Canadian genomics-based biomedical research. They are also significant in thinking about how researchers themselves should approach the politics of inclusion and recognition in the life sciences. If certain marginalized groups explicitly reject the term race in representational strategies, these differences should not be glossed over as merely local practice, but rather, should be seriously considered as part of the increasing complexity of biomedicalized governance in population genomics projects. The interrelationships between marginalized communities, strategies of representation and citizenship and practices of corporeality in the life sciences will continue to intersect and grow. Thus, as Steven Epstein (2007) argues, we need to emphasize the varying degrees to which different people or groups are able to lay claim to the prerogatives of citizenship, and other forms of identity, as well as consider how biomedical authority and institutions reproduce or transform social categories and exclusions.
Conclusion
In Canadian human genomics–based biomedicine, the term race has been neither solely recast within neutral terms nor catapulted into debates about the reemergence of a racist science; rather, it is one of the many terms, with specific histories and experiences, that needs to be accounted for within the broader politics of difference that characterizes Canadian genomics-based biomedical research. At the same time, discourses of multicultural difference appear to be far from dead or failing and, if anything, are finding renewed vigor in the molecular intersections between health, difference, and disease. Categories of race, ethnicity, and populations continue, then, to be defined in multiple ways, often strategically, in genomics-based biomedical research. The broad overview teased out in this chapter points toward an increasing interplay between categories of difference and classification at all levels of population genomics, from the historical demographers who contribute to shaping epidemiological studies, to the branding of Canadian genomics internationally through Genome Canada.
The nation-state and other related or adjacent institutions study, mobilize, and act on populations, but population groups may potentially mobilize resources and claims to act on the nation-state in the life science sectors. The value, then, of populations in the commercial, ethical, and molecular sense is at stake in national strategies of genomic research, regardless of whether groups are perceived as diverse or homogenous. As many nations, similar to Canada, are developing their own genomic variation initiatives to explore the relationship between population, disease, and diagnosis, attention to how categories of difference become institutionalized and their histories will be significant for considering the transnational aspects of population genomics and human genomic variation initiatives. In light of the growing number of nationalized genomics strategies and the global aspects of major population genomic research projects, the task should be not only to consider how race may be used in these projects, but to connect seemingly disparate biosocialities rooted in diverse histories and employing multiple understandings of race, ethnicity, and populations.
Notes
1. Many thanks to David Jones and Ian Whitmarsh for organizing the conference What’s the Use of Race? at The Center for the Study of Diversity at MIT for which a version of this paper was originally written. I also want to thank them as editors for including my research in this volume and providing detailed feedback on an earlier draft. I would like to thank, as well, the following people for their careful readings of earlier versions: Suki Ali, Nina Kohli-Laven, Carolyn Pedwell, Hillary Rose, Nikolas Rose, and Andrew Smart. Finally, my sincere thanks to the scientists, project managers and bioethicists whom I interviewed. This research was funded by the Social Sciences and Humanities Research Council of Canada, the Harshman Scholarship Foundation, and the University of London Central Research Fund.
2. In this regard, Genome Canada is linked to an increasing governmental trend of creating independent autonomous organizations established by legislation or as not-for-profit corporations under the Canada Corporations Act or similar legislation. For more on the specific institutional structures of Genome Canada, see KPMG (2007). Also, for a discussion of intellectual property issues emanating from Genome Canada–funded research, see Power et al. (2008). There is not sufficient space in this chapter to explore the significant institutional and legislative aspects of Genome Canada as it relates to the scientific research and development industry and culture in Canada. Note that one of Genome Canada’s mandates includes “the assumption of leadership in the area of ethical, environmental, economic, legal, social and other issues related to genomics research (GELS) and, the communication of the relative risks, rewards and successes of genomics to the Canadian public.” This is a remarkable development that not only has economic implications for researchers in the social sciences and humanities in Canada, but also reflects the rise of a bioethics expertise that has the authority to evaluate, critique, and authorize the legitimization of biomedical practices from the laboratory to commercialization.
3. The mandate of the Canadian Biotechnology Advisory Committee (CBAC), concluded on May 17, 2007, with the release of a new Government of Canada Science and Technology Strategy, “Mobilizing Science and Technology to Canada’s Advantage” (http://www.ic.gc.ca/epublications/). CBAC is succeeded by the Science, Technology, and Innovation Council, which is described as providing evidence-based science and technology advice on issues, referred to it by government, which are critical to Canada’s economic development and social well-being. The Council will also produce regular national reports benchmarking Canada’s science and technology performance against international standards of excellence” (http://www.stic-csti.ca/). For an international response to these changes, see Nature (2008).
4. Much of Genome Canada funding is delivered through the six independent regional genomic centers in Canada. These regional centers seek to establish a life sciences cluster of genomics-related research institutions and companies working together within their respective regions. In tune with Genome Canada, the regional centers are called, from east to west, Genome Atlantic, Genome Quebec, Ontario Genomics Institute, Genome Prairie, Genome Alberta, and Genome British Columbia. The main aims and objectives for each regional center, broadly speaking, are to facilitate significant socioeconomic benefits for people within the region and secure investment and provide expertise to facilitate commercialization resulting from the research activities conducted in each region. The centers are distinct from each other and not necessarily connected to previously established research institutions or universities. Notably, the centers also have projects that reflect the traditional resource economies of the regions they represent: Genome British Columbia hosts a genomics program in conifer forest health, Genome Alberta a program on crop improvement, and Genome Atlantic a project on the cod-fishing industry. The centers are tied to the landscape and regions of Canada in terms of resources and traditional research areas.
5. The Canadian Constitution uses the term aboriginal to refer to three groups of indigenous peoples in Canada: Innu (northern Canada), Métis (French and aboriginal), and First Nations (who are under a separate set of legal structures called the Indian Act). These broad terms, along with the term aboriginal, do little to capture the geopolitical differences between the peoples who have been grouped in Canada’s borders and identify with the terms indigenous or aboriginal. The employment and use of these terms are reflections of political contexts, aims, and positions as well as complex historical intersections of colonial law, national sovereignty, and identity; there is not space enough to address these issues adequately in this chapter. Here I use the term aboriginal because it is the term employed in the examples I explore.
6. This legislative definition links Caucasian to race, and whiteness to color. Richard Tutton (2007b) has written on the relationship between whiteness and the category Caucasian in the context of U.K. genetic studies identifying tensions between self-identification and genotyping practices. The term Caucasian finds its roots in eighteenth-century racial classification and continues to embody and reflect many historical vicissitudes: a recent article in Nature by researchers at the J. Craig Venter Institute (Ng et al. 2008, 307) reflects the term’s continuous and illustrious career in population genomics: “Even the term ‘Caucasian’ can be deceptive. If a self-identified Caucasian originates from a founder population in which certain disease-specific alleles occur at higher frequencies (e.g., Quebec French Canadians or Ashkenazi Jews), his or her doctor may miss an important aspect of the patient’s medical history. One’s ethnicity/race is, at best, a probabilistic guess at one’s true genetic make-up.” Reflecting perhaps the assumption that Caucasian/whiteness is a readily knowable and obvious classification in relation to other categories (even it can be deceptive), the quote points to increasing tensions and contradictions between the corporeal/visible body and an emphasis on molecular difference/genotype within the categories white and Caucasian.
7. At the time of publication, I had conducted an interview with a CARTaGENE employee, who explained to me that was I not able to view the questionnaire because the project was still undergoing the approval process with research ethics committees, and hence the questionnaire was currently confidential.
8. GWAS involve scanning thousands of case-control cohorts, which use hundreds of thousands of SNP markers in the human genome. Algorithms are then applied that compare the frequencies of SNPs or haplotype markers between the disease and the control cohorts. Collecting consistent clinical phenotypes and, in addition, matching cases (and control groups) in relation to geographic origin and ethnicity is of critical importance for GWAS researchers. See chapter 8.
9. Perhaps the most well known example follows: between 1982 and 1985, Dr. Richard Ward (former head of the Institute of Biological Anthropology at Oxford) took 883 vials of blood from the Nuu-chah-nulth First Nations in British Columbia. Almost two-thirds of the population have arthritis, one of the highest rates of arthritis in the world. Unbeknownst to the donors, however, he kept the samples and used them in genetic anthropology studies, which identified “a substantial level of mitochondrial diversity for a small local population,” and Ward et al. (1991, 8720) suggested “that their origin predates the entry of humans into the Americas.” When this was revealed, the Nuu-chah-nulth argued that Ward should have returned the specimens and should not have shifted his research into an area not approved by the community.
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