A Lab of Their Own: Genomic sovereignty as postcolonial science policy

Abstract

This paper analyzes the emergence of ‘genomic sovereignty’ policies as a newly popular way for postcolonial countries to frame their investment in genomics. It identifies three strands in the genealogy of this policy arena—the International Haplotype Mapping Project as a model and foil for postcolonial genomics; an emerging public health genomics field which stands in contrast to Western pursuits of personalized medicine; and North American drug companies increased focus on ethnic drug markets. I conceptualize postcolonial genomics as a nationalist project with contradictory tendencies—unifying and differentiating a diverse body politic, cultivating national scientific and commercial autonomy and dependence upon global knowledge networks and foreign capital. It argues that the ‘strategic calibration’ of socio-political versus biological taxonomies in postcolonial genomics creates two primary challenges for this arena, which I refer to heuristically as dilemmas of mapping and marketing. # 2009 Policy and Society Associates (APSS). Elsevier Ltd. All rights reserved. We believe that if we do not carry out studies to understand our genomic patrimony, well, no one else will because they will be interested in their own populations. Secondly, should the interest exist and they [other countries] come to get this information, they make us dependent on this information and then it will cost us. We have to develop our own genomic information. Researchers in a growing number of countries outside of North America and Europe are successfully lobbying their governments to exercise a kind of protective ownership over the DNA of their populations. They do so in response to the increasing implications of genetic variation for health outcomes and the growing economic value of genetic information in pharmaceutical development (Whitmarsh, 2008). They lay claim to new biopolitical entities, ‘‘Mexican DNA’’ and ‘‘Indian DNA’’ among others, strategically calibrating socio-political categories (i.e. nationality and raceethnicity) with scientifically produced ones (i.e. genotypes). On the surface, this policy frame asserts a deeply nationalist sentiment of self-determination in a time of increasing globalization. It implicitly ‘brands’ national populations as biologically distinct from other populations, ‘naturalizing’ nation-state boundaries to ensure that less powerful countries receive the economic and medical benefits that may result from population genomics. However, the following analysis reveals the contradictory tendencies of genomic sovereignty policies—unifying and differentiating a diverse body politic, cultivating scientific and commercial autonomy and dependence upon global knowledge networks and foreign capital. www.elsevier.com/locate/polsoc Available online at www.sciencedirect.com Policy and Society 28 (2009) 341–355 E-mail address: ruha9@ucla.edu. 1 From an interview with Mexican Institute of Genomic Medicine official, cited from Séguin et al. (2008b). 1449-4035/$ – see front matter # 2009 Policy and Society Associates (APSS). Elsevier Ltd. All rights reserved. doi:10.1016/j.polsoc.2009.09.007 Despite these contradictions, proponents of this field tend to celebrate its emergence as a form of empowerment without careful attention to the ways in which genomic sovereignty inherits the perils produced by the ‘geneticization of life’ more broadly. Of particular concern are the ways in which national and group identities once premised on a ‘‘history of comradeship and mutual alliance’’ are increasingly understood as genetic affiliations that can be made or unmade with blood tests (Johnston, 2003). Anthropologist Margaret Lock (1997) refers to the ‘‘category fallacy’’ embedded in the Human Genome Diversity Project, arguing that ‘‘to make a selection of contemporary groups indentified on the basis of a shared culture, and then to assume that their genetic make-up is also shared, is to conflate time and space in an entirely inappropriate way’’ (285). Much of this critique rightly warns against the negative implications of research initiatives based in North America and Europe which uses the non-Western world and indigenous peoples as genetic laboratories (Marks, 2005). But developments in postcolonial genomics, wherein nonWestern researchers are building ‘labs of their own’ for liberatory and empowering ends, provides a new scientific context that is less amenable to such broad dismissal (pace Lock), even as it still requires careful analysis of the relationships between political rhetoric, scientific practice, and social effects. Drawing upon a political sociology of science framework, this paper examines how structures of power and inequality in the global distribution of scientific, technological, and economic resources impact the institutionalization of new genomic knowledge practices and policy framings. It engages work on the methods and rhetoric used to ‘align’ categories of human difference (Epstein, 2007; Foster & Sharpe, 2002; Kahn, 2006) with particular focus on the ‘resuscitation’ of racialized constructions of group identity (Benjamin, 2010; Fullwiley, 2008; Montoya, 2007; Reardon, 2004; Soo-Jin Lee et al., 2001). I identify three strands in the genealogy of this policy arena—the International Haplotype Mapping Project as a model and foil for postcolonial genomics; an emerging public health genomics field which stands in contrast to Western pursuits of ‘personalized medicine’; and North American pharmaceutical companies increased focus on ethnic drug markets. My central claim is that in the context of national genomics initiatives the work of calibrating scientific and sociopolitical classifications is not haphazard conflation, but a deliberate interpretation of genomic data to match the sociohistorical record and a re-imagining of historical and cultural narratives to make sense of genomic findings. This ‘strategic calibration’ is carried out in the service of often laudable public health and social justice aims. However, precisely because of this national empowerment framing, it is tempting for analysts to overlook the ways in which the geneticization of national populations impacts groups differently, enriching some and dispossessing others, solidifying and weakening group ties to the nation-state in unexpected, and potentially detrimental, ways. Thus, in the second part of the paper, I delineate two related challenges that grow out of postcolonial genomics, which I refer to heuristically as dilemmas of mapping and marketing. To preview, the first set of dilemmas around mapping genetic diversity refers to the challenges involved in defining populations of interest in such a way that they are methodologically useful and politically unproblematic. For researchers, the first phase of mapping involves identifying common genetic patterns in a national population, based on shared haplotypes. A haplotype is the set of alleles found on a single chromosome, and careful identification of a minimum set of haplotypes is thought to ‘capture the signal of untyped markers’ on the genome, most importantly those associated with disease susceptibility (Terwilliger & Hiekkalinna, 2006) and drug metabolism (Nebert & Menon, 2001). Genotyping is the process of determining the allelic variation on a particular person’s DNA. While there is wide consensus following the completion of the Human Genome Mapping Project that human beings share 99.9% of their genes, such that researchers cannot point to clear, qualitative genetic breaks between one population and another, researchers are interested in the variation of shared haplotypes across populations. In the second phase of mapping, called genome-wide association studies, researchers focus on how these haplotype groupings are linked to disease risk. By comparing people who have a particular disease with people who do not, putative risk loci are identified which can be studied in more depth (Manolio, Brooks, & Collins, 2008). R. Benjamin / Policy and Society 28 (2009) 341–355 342 2 As the case of U.S. Black Seminoles (descended from freed slaves, not considered ‘pure’ or ‘blood’ Seminoles) illustrates, those who already hold a precarious or minority status within a group are more vulnerable to the exclusionary effects of genetic identity (Johnston, 2003). 3 My use of the terms ‘developing’, ‘postcolonial’, and ‘non-Western’ mirrors the language of genomic sovereignty proponents. I use them interchangeably throughout the paper to signal that genomics research in these contexts is being strategically framed in relation to European and North American scientific and political dominance. Haplotype mapping becomes politically problematic when, for example, researchers find that a given social group shares more genetic similarity with a rival social group than with their own in-group members, as was the case in the Kashmir region of India (Mudur, 2008). Or, controversy may arise when genome results contradict a widely held origin story of a group or nation, as was the case recently in Mexico when results seemed to indicate that the ‘younger’ Mestizo ethnic group may be ‘older’ than the indigenous groups thought to be its ethnoracial precursor (Schwartz, 2009). It is not that researchers do not expect or enjoy such ‘surprises’. Rather, the central role of national governments as the sponsor of these HapMap projects creates greater public scrutiny and less insulation for scientists to make sense of these developments as purely scientific curiosities. The biopolitical context in which postcolonial genomics occurs, transforms curiosities into controversies that compel proponents to strategically calibrate socio-political and biological taxonomies in ways that can simultaneously advance the science, foster public support, and produce health and economic goods. The second set of dilemmas around ‘marketing’ relates to the increased focus of North American pharmaceutical companies on ethnic drug markets in non-Western contexts, wherein ethnic groupings act as proxies for population genotypes to which drugs can eventually be tailored. In this part of the discussion, I focus on the ambiguous relationship of diasporic and indigenous populations vis-à-vis the creation of ethnic drug markets. These groups, in particular, highlight the existing social fault lines that make claims about discrete ‘national genomes’ untenable in the face of transnational migration and difficult to establish as a ‘universal good’ in the face of socio-economic inequities that severely limit access to such goods. A disjunction exists between these groups’ participation in genomics knowledge production as DNA donors and their marginal importance as genomic consumers. Genomic sovereignty claims are complicated by these two biopolitically rogue populations; neither ethnic proxies nor what we might call ethnic precursors—indigenous people who are thought to have contributed to the national genome lineage but are ethno-racially distinct and prior to it—are the target markets of pharmacogenomics. Their upstream inclusion and downstream exclusion requires sustained attention as a matter of science and health policy analysis. To that end, the remainder of the paper introduces the legal precedent of genomic sovereignty, juxtaposing the formal policy framing with social, economic, and political underpinnings which complicate the empowerment and protectionist rhetoric. Then I elaborate the three institutional strands of this policy arena, namely the International HapMap Project, the field of public health genomics, and ethnic drugmarketing. I closewith a discussion of two sets of dilemmas confronting this policy arena, which I have previewed above. 1. Background: National Genome, Inc. In a recent analysis of ‘the global genome’, Thacker (2005) argues that globalization is a ‘biological phenomenon’ to the extent that the biotech industry crosscuts the traditional boundaries of nation-states in its pursuit of biovalue (xvii). As a response to what Thacker has identified, this discussion highlights a counter-emergence to the global genome—the assertion by countries left out of the Euro-American dominated International HapMap project of multiple national genomes. Proponents of genomic sovereignty policies strategically (re)biologize the nation-state by asserting that less powerful nations must protect the cumulative genetic heredity of its population from being pillaged by more powerful nations. 1.1. ‘Lab of Their Own’ In the most prominent assertion of genomic sovereignty to date, theMexican Senate unanimously approved reforms to the General Health Law in 2008, which makes ‘‘the sampling of genetic material and its transport outside of Mexico without prior approval. . .illegal’’ (Séguin, Hardy, Singer, & Daar, 2008b: 6). The Genomic Sovereignty amendment R. Benjamin / Policy and Society 28 (2009) 341–355 343 4 Epstein (2007) refers to a similar process of ‘categorical alignment’ in which medical and political schemas are aligned or superimposed on one another. By contrast, my use of ‘strategic calibration’ aims to describe the process at an earlier stage when the work of matching up scientific and socio-political taxonomies is not aligned or invisible, as Epstein suggests. I prefer this nomenclature to the more common yet vague ‘co-production’, which does not account for the iterative dimension of strategically matching classificatory schemas, and to the more dystopic notion of ‘colliding’ (Kahn, 2006) which implies impending damage and chaos if taxonomies fail to match up. states that Mexican-derived human genome data are the property of Mexico’s government, and prohibits and penalizes its collection and utilization in research without prior government approval. It seeks to prevent other nations from analyzing Mexican genetic material, especially when results can be patented, and comes with a formidable bite in the form of prison time and lost wages. In addition to Mexico, countries such as India, Thailand, South Africa, China, and others have issued policy statements or passed legislation that seeks to develop genomics infrastructure explicitly to benefit their national populations (Séguin et al., 2008b). So while the term ‘genomic sovereignty’ is predominantly used only in Mexico, its conceptual underpinnings are emerging in other nations. Unlike pan-indigenous advocacy groups that have asserted group sovereignty claims to opt-out of genomics research (Marks, 2005), these governmental policies set out proactive research agendas to stimulate health and economic gains. In this way, the biology of the population becomes a ‘natural resource’ and genomics serves as a nation-building project maximizing the potential of this resource. Unlike other nationalisms, the point of postcolonial genomics is not to posit the nation as ‘pure’ (as in the Iceland case, cf. Fortun, 2008), but as a unique genetic mixture (i.e. ‘admixed’) when compared to other nations. Proponents of genomic sovereignty policies draw upon the empowerment idiom from the classic essay ‘‘A Room of My Own’’ by Virginia Woolf, asserting that if genomics research is a house then developing countries should ‘‘create a room of their own’’ (Séguin, Hardy, Singer, & Daar, 2008a). This discussion complicates the agenda to champion genomic sovereignty by examining the dilemmas that emerge out of this new research and policy domain. The title of this article draws upon one such illustration, wherein the actual labs in Mexico’s genome institute were equipped by U.S. based biotech companies Affymetrix, Applied Biosystems, and Illumina. The labs are named after these commercial benefactors and not, as one might expect of an undertaking framed in terms of national sovereignty, after any of Mexico’s historic scientific figures. The ways in which collaborating with North American commercial entities may shape the scientific agenda and political accountability of the institute are the focus of ongoing research. For the purposes of this discussion, we should note that the material and symbolic infrastructure of postcolonial genomics is comprised of a mixed genealogy that confounds the rhetoric of nationalist empowerment. 1.2. Social cartographies In addition to its stated aims, genomic initiatives have the potential to naturalize social hierarchies and disparities. Debates surrounding genomics in Euro-American contexts—whether or not it naturalizes social inequalities as ‘racial’ (Duster, 2005; El-Haj, 2007; Fujimura, Duster, & Rajagopalan, 2008; Kahn, 2006; Montoya, 2007; Reardon, 2004; Soo-Jin Lee, Mountain, & Koenig, 2001) or fails to problematize the effects of capitalist accumulation on knowledge production (Etzkowitz, 1998)—still remain relevant to the arena of postcolonial genomics. But as a science policy born of global power inequality, postcolonial genomics can also be understood as having a mixed genealogy and trajectory that is at once innovative and retrograde in its assertions. While diversity maps serve as a ‘naturalizing’ cartography of the nation that aims to account for the accumulated genetic inheritance of a people, they also act as social maps for contemporary anxieties about social fragmentation and future cohesion. As one example, the first major task of the Mexican HapMap Project was to investigate the common haplotypes distributed across six states. Schwartz (2008) explains that Mexican newspaper reports drawing upon the Mexican Institute for Genomic Medicine’s public communications, stated that ‘‘due to the race, there is a pronounced difference between the populations of various states within the country. In Sonora they have the highest prevalence of European genes, 58%, while in Guerrero, their population presents a major index of African genes, 22%’’. While scientists at the Mexican Institute criticize the newspaper’s use of ‘race’, preferring ‘population’ as a more scientifically valid substitute, the Institute’s public statements and academic publications reveal their own use of race-ethnicity to describe Mexico as a predominantly ‘mestizo’ nation (Silva-Zolezzi et al., 2009; Contreras et al., 2009). In its second phase of research and amidst controversy over the exclusion of indigenous populations from the first phase, the Mexican Institute broadened its demographic sample to ascertain the genetic relationship between indigenous communities and the dominant Mestizo population (Schwartz, 2008). The ethnoracial and geographic focus of the Mexican HapMap project mirrors ongoing disputes about disparities in the distribution of social and political resources across states and social groups, and in particular, the rights and relative marginality of indigenous communities within the country. Researchers at the Mexican Institute showed initial signs of relief and vindication at R. Benjamin / Policy and Society 28 (2009) 341–355 344

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@inproceedings{Benjamin2013ALO, title={A Lab of Their Own: Genomic sovereignty as postcolonial science policy}, author={Ruha Benjamin}, year={2013} }