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Genomic and Viral Sovereignty: Tethering the Materials of Global Biomedicine
Abstract
Viruses and genomes have become the subjects of sovereign claims in contemporary biomedical research. These claims invest biological materials with geopolitical attachments to both nation-states and continental regions and seek to alter the property regimes that characterize global biological economies. As rhetorical and juridical devices, sovereign claims over viruses and genomes seek to establish new kinds of enclosures to control biological life. The recasting of sovereignty over biological parts, we argue, gains purchase by tethering biological materials to constructed origin points as they travel through global research and commodity networks
... Pathogen genetic sequence data, however, is widely regarded as falling outside the scope of those existing multilateral agreements. The hard-fought diplomatic frameworks governing the international sharing of benefits derived from genetic resources were mostly negotiated on the basis of still having to exchange biological materials, that is, physical samples of viruses and other microbes (Halabi, 2019;Hinterberger and Porter, 2015). As sequence data become an increasingly powerful informational resource, it remains unclear what options will remain for LMICs to secure more equitable access to the benefits accruing from 'their' genetic resources in future (Fearnley, 2020). ...
... Ultimately, these wider international political impacts of pathogen genetic sequence data are even bleeding into the domain of sovereignty by raising deeper questions about whether governments can retain sovereign control over genetic resources located within their borders (Hinterberger and Porter, 2015). Only recently, for example, a US company managed to patent a new Ebola medicine developed solely on the basis of digital sequence data deposited in the public database GenBank, thus bypassing any international benefitsharing obligations that would have likely accrued if using material samples sourced from a foreign country (Hammond, 2019). ...
... Just from analysing pathogen genetic sequence data, however, it is apparent that state sovereignty is already becoming much more closely tethered to the capacity of governments to access and control such bioinformational flows (Hinterberger and Porter, 2015; see also Stephenson, 2011). Like other key areas of International Relations, including the conduct of war (see Cooper, 2008;Dillon and Reid, 2009), the management of global health emergencies is undergoing a protracted process of informationalisation. Bioinformation too now forms an integral part of what the information philosopher Luciano Floridi calls the global 'infosophere', that is, the dense 'informational environment constituted by all informational entities, their properties, interactions, processes and mutual relations' within which states are now embedded (Floridi, 2014: 41). ...
Global health emergencies – like COVID-19 – pose major and recurring threats in the 21st century. Now societies can be better protected against such harrowing outbreaks by analysing the detailed genetic sequence data of new pathogens. Why, then, is this valuable epistemic resource frequently withheld by stakeholders – hamstringing the international response and potentially putting lives at risk? This article initiates the social scientific study of bioinformational diplomacy, that is, the emerging field of tensions, sensitivities, practices and enabling instruments surrounding the timely international exchange of bioinformation about global health emergencies. The article genealogically locates this nascent field at the intersection of molecularised life, informationalised biology and securitised health. It investigates the deeper political, economic and scientific problematisations that are engendering this burgeoning field. It finally analyses the emergent international instruments developed by governments, scientists and industry to facilitate more rapid global sharing of bioinformation through novel practices of data passporting. Overall, the in-depth study of bioinformational diplomacy reveals just how deeply, and even constitutively, international relations are entangled with the life sciences – by carefully tracing how laboratory practices of sequencing life at molecular scale also end up recontouring the play of sovereignty, power and security in international relations.
... This regulatory strategy is not confined to Europe. An informative example is provided by Hinterberger and Porter (2015) in their study of claims of national sovereignty over viruses and genomes. Concerned at the potential for biological data and material sourced within their jurisdictions to be appropriated by companies and researchers in other, wealthier nations, some states in the global south have claimed sovereignty over such materials through legal concepts such as 'the Mexican genome'. ...
... Given that 'tethering' (Hinterberger and Porter 2015) requires a connection to a fixed, non-mobile entity, it is also worth paying attention to what did not flow in making StemBANCC hiPSC. The personal and family medical history of an identifiable, living individual, as collected at each recruitment site, count as sensitive personal data under European data protection law. ...
... One way in which they do this is by mandating the creation of durable connections between people, places, events and records, which tether the biological material to fixed, non-mobile entities. Such tethers (Hinterberger and Porter 2015) not only make particular records of origin and history part of the identity of the bio-object, they concurrently incorporate particular conditions of mobility into the legal strand of its identity. These conditions enable bio-objects to cross regulatory boundaries-whether national jurisdictions in the case of biosecurity laws or institutional boundaries in the case of MTAs and contracts. ...
The concept of bio-objectification describes how the ‘raw materials’ of living cells and tissues are subject to both technical manipulations and ontological transformations to produce novel ‘bio-objects’ such as cell lines and transgenic animals. Bio-objects are conceptually fluid, but also subject to literal circulation through biobanks and repositories. Making bio-objects mobile means producing them in such a way that they are capable of travelling across jurisdictions, institutional boundaries, and of moving between public and private sectors. This paper uses one particular bio-object –the human induced pluripotent stem cell (hiPSC), and a particular context, a European consortium dedicated to creating an open access repository of hiPSC- to explore what making mobilisable bio-objects entails. The bio-object not only has multiple strands of identity- legal, ethical, political, technical- but this identity is distributed across, and inscribed in, a variety of paper documents, digital records, as well as the biological material. Making bio-objects mobile means putting these heterogeneous components into circulation, which can entail travel through different infrastructures and at different speeds. Moreover, contemporary legal and ethical requirements for the use of human biomaterials require the formation of durable connections that tie bio-objects to places and persons of origin as a condition of mobility.
... As Benjamin (2009) has noted, such "national genomes" have not necessarily carried claims of national genetic purity, but have often alluded to the idea that a unique range of genetic mixture-a particular kind of heterogeneity-could be identified within a country's borders. Assemblages of biological, geographic, political, and cultural knowledge (Hinterberger and Porter 2015), these "national genomes" emerged at the intersection of molecular-biological advances, local understandings of difference, and ambitious promises about the future value of genomic knowledge. Mexico's efforts, in particular, to research and protect access to the "Mexican genome," drew international attention as the most comprehensive national genomics program among the world's emerging economies Tekola-Ayele and Rotimi 2015;Hardy et al. 2008). ...
... To do so, we draw on interviews with scientists and other key actors in this field, as well as a review of scientific publications and related press coverage. We show that this nationally-tethered (Hinterberger and Porter 2015) genomic identity is much less enduring that it and other "national genomes" might have appeared when proponents initially argued for their importance, especially for developing countries' health and economic futures. Instead, with regard to genomic identity, we show that ambiguity and flexibility (Panofsky and Bliss 2017) have been critical to recent efforts in Mexico to create value from the genome, in both a scientific and commercial sense. ...
... Importantly, the notion of genomic sovereignty has gained traction among scientists and policymakers in several emerging economies around the globe, including in Africa (de Vries, Slabbert, and Pepper 2012;Slabbert and Pepper 2010;Hinterberger and Porter 2015). Writing in Nature Reviews Genetics, international proponents have pointed to Mexico's legislation as exemplary, referring to genomic sovereignty policy as key for developing countries worldwide to "encourage local innovation and participate as equal partners in the global knowledge-based economy" (Séguin and Hardy 2008, 490). ...
Experts have widely promoted developing country investment in national genome projects in order to ensure their inclusion in medical genomic advances, to protect their genomes from foreign exploitation, and to foster their participation in a future genomics-based bioeconomy. In this context, the Mexican federal government’s investments to establish the National Institute of Genomic Medicine in 2004, that institute’s subsequent efforts to map the “Mexican genome” between 2004 and 2009, and the passage of legislation in 2008 to protect Mexico’s “genomic sovereignty” drew attention as the most comprehensive national genomics program among the world’s emerging economies. Given the prominence of Mexico’s decision to pursue its “national genome” and to understand how this approach to science policy has unfolded with time, we track major developments in the field of genomic medicine in Mexico and the trajectory of the “Mexican genome” over the last decade. Rather than the nation-state bound “Mexican genome,” we show that flexibility and ambiguity with regard to genomic identity has been instrumental amid the increasingly transnational and public-private nature of this scientific field. Over the last decade, Mexican samples have frequently been re-branded as the source of flexible, panethnic “Latino” or “Latin American” DNA.
... Furthermore, Fungible Life demonstrates that in such future-making, the forces and features of the particular national or regional context reconfigure and redefine the genome, the biomedical science, and the cultural, political, and economic factors that enable and condition big genomic initiatives. In many ways, national biobank initiatives reflect calls to regard the DNA of the nation-state-bound population as a national resource, thus laying political sovereign claim over nature (Tupasela and Tamminen 2015;Hinterberger and Porter 2015;Rabinow 2002). ...
... The rise of Finnish genetics through the specialty of paediatrics and the study of rare diseases has also played an important part in making genetic research into Finnish genes and heredity a symbol of national identity and origin. Notions such as genetic romanticism (Tupasela 2016), evolutionary nostalgia (Oikkonen 2018), and tethering (Hinterberger and Porter 2015) have been used to describe the different ways genetics and genes are used to link the present to the past. This linking can work in many ways, but in the case of Finnish population genetics, it has served to provide a level of national authenticity and provenance through which Finnish researchers can claim authenticity and uniqueness. ...
Genome Finland tells a story of genomic medicine in Finland from the study of rare Finnish diseases in the 1960s and 1970s to the implementation of personalized medicine in the 2020s. The main focus is on the 21st century – the period after the Human Genome Project – and on the establishment of new infrastructures to support genomic medicine, such as biobanks. The book opens up the reasoning and discussions as well as the settings and events through which Finnish medical genetics reached the top level of international biomedicine in the late 1990s, biobanks and biobank research evolved during the 2000s and 2010s, and large transnational public-private partnership projects utilising massive amounts of genome and patient data started to dominate also Finnish research into the 2020s. In particular, Genome Finland examines and exposes the connections between biomedical science, ‘knowledge-based’ economy and business, and innovation policy in Finland during the past decades.
... He explained that a Danish reference genome made by sequencing 10,000 genomes of healthy individuals would constitute a 'catalogue of genetic variation in the Danish population', and serve at least two purposes: first, compared to the genomes of sick patients, genetic variation of healthy Danes could be used to decipher what makes people sick, and second, to discover new and hitherto unknown genetic variation in the Danes. The rationale behind the Danish reference genome thus asserts that what it means to be Danish is biologically unique and different from being Swedish, Norwegian, German, and so forth-and that valuable medical knowledge accrues from understanding and appropriating this difference (Epstein, 2007;Hinterberger & Porter, 2015;Taussig, 2009). Yet, what constitutes such distinctive 'Danishness' was not entirely clear for one committee member, who responded to the bioinformatician's presentation, asking: 'What is it to be Danish? ...
... The community of 'Danish patients' demarcated by the reference genome population as proposed by the Research Committee is not universally constituted by all individuals with access to public healthcare services, as was the case with the patient genome population. This tethering of genomes (Hinterberger & Porter, 2015), and thus people, to territory, does not only demarcate 'Danish patients' as an exclusive community of ethnic Danes. The politics of exclusion also stratifies the relations between individuals and state into those who do and those who do not count as the subjects of state investment and commitment. ...
How do precision medicine initiatives (re)organize relations between individuals and populations? In this article, we investigate how the curation of national genomic populations enacts communities and, in so doing, constructs mutual obligation between individuals and the state. Drawing on ethnographic fieldwork in the Danish National Genome Center (DNGC), we show how members of advisory bodies negotiated the inclusion criteria for two different genomic populations: a patient genome population and an envisioned ‘Danish’ reference genome population. The patient genome population was curated through a politics of inclusion, of as many genomes as possible, whereas the reference genome was to be curated through a politics of exclusion, to include only the genomes of ‘ethnic’ Danes. These two data populations configure differently the community of ‘Danish patients’ who might benefit from precision medicine, and thereby prescribe different moral continuities between person, state, and territory. We argue that the DNGC’s patient genome population reinforces reciprocal relations of obligations and responsibility between the Danish welfare state and all individuals, while the proposed Danish reference genome population privileges the state’s commitment to individuals with biographical-territorial belonging to the nation-state. Drawing on scholarship on social and health citizenship, as well as data solidarity in the Nordics, the discussion shows how population curation in national precision medicine initiatives might both construct and stratify political obligation. Whereas STS scholarship has previously deconstructed the concept of ‘population’, in the context of the troubling and violent effects of the management of human populations, we point to the importance of population curation as a vehicle for making the individual legible as part of a community to which the state is responsible and for which it is committed to care.
... international economy of virus circulation has occasioned anthropological debates around the stakes, political and scientific, of the movement of virus samples and their sequences across spaces of regulation(Caduff 2012; Fearnley 2020a;Hinterberger & Porter 2015;MacPhail 2014;Ong 2008; Porter 2019). Since improvements in PCR sequencing technologies, viral information can be increasingly detached -'untethered' in the words ofPorter and Hinterberger (2015) -from its material support in samples. ...
... international economy of virus circulation has occasioned anthropological debates around the stakes, political and scientific, of the movement of virus samples and their sequences across spaces of regulation(Caduff 2012; Fearnley 2020a;Hinterberger & Porter 2015;MacPhail 2014;Ong 2008; Porter 2019). Since improvements in PCR sequencing technologies, viral information can be increasingly detached -'untethered' in the words ofPorter and Hinterberger (2015) -from its material support in samples. Viruses have been said to dematerialise, a phenomenon facilitated by the neoliberal principle of free circulation(Ong 2008). ...
This dissertation examines the ways in which the ‘truth’ about an outbreak of zoonotic disease stabilises through the labour of sampling animals. While scarcely any case of Ebola had ever been reported in West Africa, the deadliest epidemic to date started in 2013 in the southeastern region of Guinea called ‘Forest Guinea’. Since then, ecologists and virologists from Africa, America and Europe have been conducting the largest investigation into what some frame as the origins of Ebola: they are trying to establish a fuller picture of the processes by which the disease is maintained and infects humans in a place that has become known as one of its ‘hotspots’. During 16 months of ethnographic fieldwork, I closely tracked the Guinean staff of one of those foreign projects – local vets who professionally defined their role as préleveurs (‘samplers’ in English) – while they captured animals, took, and dispatched fluid samples, communicated about the risks of contact with bats, and disclosed the finding of a new species of Ebola virus in bat species. The social sciences have dismantled the idea of singular, hegemonic epidemic origins, and indicated that complex sociospatial conditions allow for epidemics to emerge. This dissertation adopts a different analytical angle and outlines the technological, epistemological, and affective consequences of framing microbiological research as a search for the origin of epidemics. It focuses on the economy of knowledge, epistemological labour, and ethical aspirations of animal préleveurs, whose work is to make a hotspot exist in Forest Guinea. By combining attention to history, the scientific literature and ethnographic fieldwork, I resituate animal sampling within a West African genealogy of asymmetrical extraction and conservation, which crosscuts the colonial sciences, interwar disease ecology, global health, outbreak preparedness, and the newer One Health agenda. At the core of this multifaceted sampling enterprise is an interdependence between anticipatory practices and forms of insecurity – political, economic, environmental. The thesis suggests that insecurity is normalised by hotspot investigations, and that associated social hierarchies, causalities and moralities inflect the local notion of responsibility for the epidemic. Ultimately, insecurity configures the production of evidence about the so-called reservoir of Ebola and leads the hypothesis of a bat origin to gain strength in Guinea. The dissertation chapters foreground the controversies, dissimulation practices, fear, and cynicism that the quest for epidemic origins elicits locally, even as it contributes to imposing a single narrative for disease causality. In so doing, I challenge a social science view that scientific claims become authoritative when the institutions and practices that manufacture them are socially recognised as trustworthy and legitimate, i.e., secure. Instead, insecurity is entangled in the material performances and ethos of préleveurs. Far from only producing scientific evidence for experts, their activity generates clues about Ebola’s origins for many people in Guinea and Africa more generally – with significant consequences for research priorities and prevention policies.
... The example of the WHO's Pandemic Influenza Preparedness (PIP) framework shows that a more widely recognised version of molecular sovereignty can prove a real challenge to existing international arrangements. In this case, demands for viral sovereignty (Hinterberger and Porter 2015;Elbe 2010;Fidler 2008) brought about fundamental changes in the WHO global influenza surveillance and response system for the sharing of virus samples. At the height of the bird flu pandemic in 2006, the Indonesian government decided to withhold further samples of the H5N1 strain of the virus. ...
... The resulting process of accommodation, however, has significant governmental effects of its own, capturing more far-reaching and potentially disruptive arguments within a process of incremental adjustment. While a universalist rights-based approach thus has the power to unsettle exclusionary claims to property, it is limited in other ways-however, it can bring about openings for new settlements that for example include new ways of "tethering" (Hinterberger and Porter 2015) sources of information to entities later registered as intellectual property, as in the example of the WHO's Pandemic Influenza Preparedness (PIP) framework (set out above). These connections constitute an essential disruption to the relative isolation and abstraction of the otherwise sovereign system of property. ...
Monoclonal antibodies are revolutionizing cancer treatments, but come at an increasingly problematic price for health services worldwide. This leads to pressing demands for access, as in the case of Kadcyla. In 2015, patients in the United Kingdom invoked the sovereign rights of the Crown in order to demand access to this expensive yet potentially life-saving medicine that had prior been de-listed due to price. This article interprets this campaign as an act of sovereign reassertion against a fundamental exclusion, which, however, ultimately fails to challenge the concrete mechanism enabling this exclusion—intellectual property (IP). By connecting this example to other declarations of molecular sovereignty, the article argues that the use of sovereignty can perpetuate further exclusion. Drawing on the notion of biocoloniality (Schwartz-Marín and Restrepo 2013) it points out that the intellectual property regime contains a deeply embedded fiction of the world as terra nullius, a blank uninhabited canvas ripe for discovery and appropriation. This decontextualised vision of life as property works to exclude populations and patients from playing a significant role in determining the use of technologies and treatments. Instead of countering this fundamental exclusion, the concept of sovereignty further entrenches this assumption and merely contests the assignation of this property.
... First signed at the Rio de Janeiro Earth Summit convened by the United Nations, the CBD developed an approach to the environment that unites conservation of biodiversity, sustainable use of its components, and the "fair and equitable sharing of benefits arising from genetic resources." The CBD extended the principle of national sovereignty over new biological zones, so that, as Cori Hayden (2003: 53) I want to highlight the mechanisms the PIP Framework introduces to achieve this objective, the precise tools through which viruses are "tethered" (Hinterberger and Porter 2015) to sovereign states. First, each virus-or more precisely, what the Framework refers to as "PIP biological materials"-provided to the WHO Collaborating Centre or Reference Laboratory must be accompanied by a Standard Material Transfer Agreement (SMTA-1). ...
... Second, WHO developed an online Influenza Virus Traceability Mechanism (IVTM) that showed where every virus sample originated from, and where it traveled to, within the GISRS (WHO 2010). In Hinterberger and Porter's (2015) terms, viral sovereignty is documented and tracked in these systems, such that sovereign claims become mechanisms for "tethering" the anticipated future values of the virus to the national states where they originated. ...
On several occasions, the People’s Republic of China refused to share influenza viruses isolated on their territory with the World Health Organization pandemic flu surveillance system. Scholars in STS and allied disciplines have described these disputes as examples of growing conflict between global health norms of free exchange and Asian state claims of viral sovereignty. However, the discussion has largely overlooked the fact that laboratories in China freely shared genetic sequence data from isolated viruses, even when they refused to ship physical samples, a fact that complicates the opposition of open data and viral sovereignty with the different material forms of the physical sample and the nucleotide sequence. This article provides a comprehensive comparison of the heterogeneous circulations of influenza virus samples and virus gene sequences in global health influenza surveillance and argues this difference is rooted in the different knowledge-control regimes designed for exchanging samples and sequences. Engaging with debates on the position of Asian science within global scientific circulations, the article suggests that Asian scientists confront a multiplicity of global scientific infrastructures and do not necessarily rely on the authority of nation-state sovereignty to reshape global exchanges.
... Biological sovereignty is the assertion of ownership and use rights over biological samples and the data generated from them (Hinterberger & Porter, 2015), and has been a central issue in debates about EID surveillance. Typically, disputes have occurred between large global institutions and nations, but here we argue that portable sequencers could make individualsat first researchers and early adopters using the technology for specific EID surveillance, but increasingly others, including members of the publicthe gatekeepers of sequencing data and therefore necessitate their increased involvement in these disputes. ...
... Viewed in this way, Indonesia's withdrawal from WHO's virus-sharing scheme in 2007 after Indonesian samples were transferred for use by a pharmaceutical company without consultation was not simply a biological sovereignty dispute where a nation state refused to cooperate with an international health organisation, but a complex debate involving global health players such as "pharmaceutical companies, other international agencies such as the World Bank and the IMF, private global funds …, NGOs, and many different government departments and units" (Stephenson, 2011, p. 626). Hinterberger and Porter (2015) argue that biological sovereignty claims gain purchase from their "tethering potential" (p. 362). ...
Emerging infectious diseases (EIDs) occur when pathogens unpredictably spread into new contexts. EID surveillance systems seek to rapidly identify EID outbreaks to contain spread and improve public health outcomes. Sequencing data has historically not been integrated into real‐time responses, but portable DNA sequencing technology has prompted optimism among epidemiologists. Specifically, attention has focused on the goal of a “sequencing singularity”: the integration of portable sequencers in a worldwide event‐based surveillance network with other digital data (Gardy & Loman, Nature Reviews Genetics, 19, 2018, p. 9). The sequencing singularity vision is a powerful socio‐technical imaginary, shaping the discourse around the future of portable sequencing. Ethical and practical issues are bound by the vision in two ways: they are framed only as obstacles, and they are formulated only at the scales made visible by its implicit geography. This geography privileges two extremes of scale – the genomic and the global – and leaves intermediate scales comparatively unmapped. We explore how widespread portable sequencing could challenge this geography. Portable sequencers put the ability to produce genomic data in the hands of the individual. The explicit assertion of rights over data may therefore become a matter disputed more at an interpersonal scale than an international one. Portable sequencers also promise ubiquitous, indiscriminate sequencing of the total metagenomic content of samples, raising the question of what (or who) is under surveillance and inviting consideration of the human microbiome and more‐than‐human geographies. We call into question a conception of a globally integrated stream of sequencing data as composed mostly of “noise,” within which signals of pathogen “emergence” are “hidden,” considering it instead from the perspective of recent work into more‐than‐human geographies. Our work highlights a practical need for researchers to consider both the alternative possibilities they foreclose as well as the exciting opportunities they move towards when they deploy their visions of the future. The anticipated ubiquity of portable sequencers will have important implications for the future of emerging infectious disease (EID) surveillance. We argue that this future is being shaped in part by a powerful socio‐technical imaginary, the “sequencing singularity” vision, which contains an implicit geography that privileges the international scale at the expense of others. This article challenges that geography by considering some of the ethical and practical concerns, as well as opportunities, that could arise at other scales made visible by widespread in situ sequencing. e00066
... The question of where species and populations come from and the linking of genetic traits to geographical locations have, however, resurfaced as both scientific and political sites of interest more recently through the study of population genetics in both human and non-human genetics (Cavalli-Sforza et al. 1994;Dutton 2008;Tamminen 2010;Whitmarsh and Jones 2010). These processes can be seen as attempts to stabilize and naturalize the genetic identity of various populations within specific geographical locations by laying political claim and sovereignty over them (Hinterberger and Porter 2015). At the same time, some authors have drawn attention to the ways in which globalization has been taking place in the context of biotechnology (Franklin 2006;Parry 2004;Thacker 2006) and the processes that are emerging in the construction of national genetic projects and narratives (Hinterberger 2012;Pálsson and Rabinow 1999;Tupasela 2015). ...
... The comparison of efforts to stabilize the origin and authenticity of human and non-human genetics in Finland provides unique insight into the ways in which different elements need to be aligned and brought together in order to produce unique national narratives of origin and development or what Hinterberger and Porter (2015) have called 'tethering'. Various commentators have suggested that these processes are related to attempt to salvage genetic heritage (Radin 2013), as well as produce a nostalgic narrative of national imagining (Oikkonen 2014). ...
The idea of genetic authenticity and origin has been an important issue within genetics for decades for scientific, political, and economic reasons. The question of where species and populations come from, as well as the linking of genetic traits to particular geographical locations, has resurfaced as both a scientific and political site of interest more recently through the study of population genetics in both humans and non-humans. This article explores the ways in which genetics and notions of ‘authentic’, ‘indigenous’, and ‘endemic’ have become intertwined with everyday practices in research. Using the case of human and non-human genetics to compare and contrast the various facets associated with genetic identity, we seek to develop a broader picture of the ways in which genetics plays an important role in stabilizing categories of origin.
... The aluminum borate (H 3 AlBO 2 ) whisker was examined in Japan Before the clinical application and translation of whiskers in dentistry, it is important to ensure that they strictly comply with the relevant medical device regulations and undergo the registration and approval process. 45 Thus, whiskers need to undergo rigorous and exhaustive clinical trials to fully validate their effectiveness in diagnosing and treating oral diseases. 46 During clinical application and translation, conducting a thorough safety assessment of whiskers is critical. ...
Whiskers are nanoscale, high-strength fibrous crystals with a wide range of potential applications in dentistry owing to their unique mechanical, thermal, electrical, and biological properties. They possess high strength, a high modulus of elasticity and good biocompatibility. Hence, adding these crystals to dental composites as reinforcement can considerably improve the mechanical properties and durability of restorations. Additionally, whiskers are involved in inducing the value-added differentiation of osteoblasts, odontogenic osteocytes, and pulp stem cells, and promoting the regeneration of alveolar bone, periodontal tissue, and pulp tissue. They can also enhance the mucosal barrier function, inhibit the proliferation of tumor cells, control inflammation, and aid in cancer prevention. This review comprehensively summarizes the classification, properties, growth mechanisms and preparation methods of whiskers and focuses on their application in dentistry. Due to their unique physicochemical properties, excellent biological properties, and nanoscale characteristics, whiskers show great potential for application in bone, periodontal, and pulp tissue regeneration. Additionally, they can be used to prevent and treat oral cancer and improve medical devices, thus making them a promising new material in dentistry.
... Given that the notion of Finnish population becomes so closely tied to national identity, belonging and otherness are also constructed along nationality. What makes the issue of salience in relation to whiteness is how being Finnish is attached or "tethered" (Hinterberger and Porter 2015) to a frozen moment in Finnish history which pre-dates larger population migrations. ...
... Given that the notion of Finnish population becomes so closely tied to national identity, belonging and otherness are also constructed along nationality. What makes the issue of salience in relation to whiteness is how being Finnish is attached or "tethered" (Hinterberger and Porter 2015) to a frozen moment in Finnish history which pre-dates larger population migrations. ...
This multidisciplinary volume reflects the shifting experiences and framings of Finnishness and its relation to race and coloniality. The authors centre their investigations on whiteness and unravel the cultural myth of a normative Finnish (white) ethnicity. Rather than presenting a unified definition for whiteness, the book gives space to the different understandings and analyses of its authors. This collection of case-studies illuminates how Indigenous and ethnic minorities have participated in defining notions of Finnishness, how historical and recent processes of migration have challenged the traditional conceptualisations of the nation-state and its population, and how imperial relationships have contributed to a complex set of discourses on Finnish compliance and identity. With an aim to question and problematise what may seem self-evident aspects of Finnish life and Finnishness, expert voices join together to offer (counter) perspectives on how Finnishness is constructed and perceived. Scholars from cultural studies, history, sociology, linguistics, genetics, among others, address four main topics: 1) Imaginations of Finnishness, including perceived physical characteristics of Finnish people; 2) Constructions of whiteness, entailing studies of those who do and do not pass as white; 3) Representations of belonging and exclusion, making up of accounts of perceptions of what it means to be ‘Finnish’; and 4) Imperialism and colonisation, including what might be considered uncomfortable or even surprising accounts of inclusion and exclusion in the Finnish context. This volume takes a first step in opening up a complex set of realities that define Finland’s changing role in the world and as a home to diverse populations.
... Central to this sociotechnical imaginary of global health security is international cooperation, as countries need to be forthcoming about local outbreaks that may spillover and grow into a global emergency. This stands in contrast to instances of 'viral sovereignty' in the past or when governments hide outbreaks for fear of interrupting trade and travel (Lakoff, 2015b, 309;Hinterberger and Porter, 2015). As will be discussed subsequently, detractors from the sociotechnical imaginary of global health security have criticized the uneven burden that the International Health Regulations have placed on the Global South. ...
... 97 Ibid. 98 Hinterberger and Porter (2015). 99 Bollinger, above n 9, 7. 100 Hinterberger and Porter, above n 97, 378. ...
In 2007 the Indonesian government claimed sovereignty over the H5N1 influenza virus samples isolated within Indonesia’s territories, refusing to share those samples with the World Health Organisation. Indonesia’s sovereignty claims conflicted with the decades-long practice of sharing influenza samples with the WHO, and was seen as an affront to scientific norms of cooperation and openness. The conflict was ostensibly resolved in 2011 with the introduction of the WHO’s Pandemic Influenza Preparedness Framework (PIP Framework), which was intended to secure access to influenza viruses from around the world and effect a fairer distribution of vaccines and other benefits associated with the use of pandemic influenza samples. The problem is, the PIP Framework did not resolve the issues created with the concept of viral sovereignty. In fact, by recognising the sovereign rights of states over this subset of pathogens, the PIP Framework legitimised viral sovereignty as a broader legal norm. Instead of resisting this concept, the WHO quietly acceded to it and reinforced a set of perverse incentives for countries to restrict access to pathogens precisely when those pathogens embody the greatest value: during a public health emergency. This chapter demonstrates that the concept of viral sovereignty did not begin with Indonesia in 2007, and more importantly, it did not end with the PIP Framework in 2011. Despite the term “viral sovereignty” fading into relative obscurity, the concept itself is now an established legal norm that could delay efforts to save lives during epidemics and pandemics.
... To research the complex mechanisms behind diseases, large populations need to be studied, a requirement which has led to considerations and claims about which populations are the most suitable for this endeavor (Hinterberger and Porter, 2015;Tupasela, 2016;Winickoff, 2006). One result of this is that many countries have claimed that their own collections are drawn from populations offering especially high potential for biomedical research (Tarkkala and Tupasela, 2018). ...
In recent decades biomedical samples and data have been organized into large depositories such as biobanks. This study examines how biobanks are expected to make personalized medicine reality. Consequently, this study asks: What do the expectations related to biobanks as conditions of possibility for personalized medicine tell us about the knowledge production in which biobanks are supposed to participate, and the role biobanks play in it?
To answer this question, biobanking is studied through three different lenses. The analytical sections unpack, first, the claims of high quality samples they store; second, the ideas related to unique research population(s) seen to be stored in biobanks; and third, biobanks’ links to the expectations of translational medicine.
... It suggests isolation and purity, despite the rough consensus that there are no 'pure' populations (see Gibbons, 2017). Yet the interview excerpt above is significant in that it shows how being stable or 'genuine' must always be connected with or 'bridged' to somewhere else in order to find a rootedness or 'tethering' (Hinterberger and Porter, 2015). The relationship between being an outlier and having bridges to other populations is at the core of the difficulty in generating genetic uniqueness while maintaining similarity and significance for other research populations. ...
Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in cases such as deCode in Iceland, Quebec Founder Population, and Generation Scotland. In such cases, researchers and policy makers have used the genetic and historical uniqueness of their populations to attract scientific, commercial and political interest. In this article, we explore how in countries with population isolates, such as Finland, the researchers balance considerations relating to the generalization and replicability of findings in small yet unique research populations to global biomedical research interests. This highlights challenges related to forms of competition associated with genetics research markets, as well as what counts as the 'right' population for genetic research.
... Critics of viral sovereignty also argued that flu viruses by their very nature contravene and contradict national sovereignty (cf. Hinterberger and Porter, 2015). Viruses and an international legal order grounded in sovereignty are ontologically incompatible because viruses (like science) know no country (Fidler, 2004). ...
This paper examines political norms and relationships associated with governance of pandemic risk. Through a pair of linked controversies over scientific access to H5N1 flu virus and genomic data, it examining the duties, obligations, and allocations of authority articulated around the imperative for globally free-flowing information and around the corollary imperative for a science that is set free to produce such information. It argues that scientific regimes are laying claim to a kind of sovereignty, particularly in moments where scientific experts call into question the legitimacy of claims grounded in national sovereignty, by positioning the norms of scientific practice, including a commitment to unfettered access to scientific information and to the authority of science to declare what needs to be known, as essential to global governance. Scientific authority occupies a constitutional position insofar as it figures centrally in the repertoire of imaginaries that shape how a global community is imagined: what binds that community together and what shared political commitments, norms, and subjection to delegated authority are seen as necessary for it to be rightly governed.
... It is particularly relevant to consider the impact of these changes on populations who are already marginalised or underrepresented in medical research [22,23]. This applies not only to different communities within developed countries, but to the wider flow of data, materials, technology and medical knowledge between the global North and South [24,25]. Do translational initiatives risk exacerbating existing inequalities and what means of redress might be available? ...
New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.
This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection.
... Second, branding serves as a process through which particular associations between heritage and geolocation, or genome geographies (Nash, 2013;Fujimura and Rajagopalan, 2011) can be generated. Here, ancestry and narratives of identity become coupled with spatio-temporal locations whereby rights to land, property, and national narratives become physically fixed or tethered (Hinterberger and Porter, 2015). In some cases whole nations can become aligned around a common notion of origin and homogeneity, such as with Iceland (Rose, 2001). ...
Populations as brands in medical research – placing genes on the global genetic atlas Abstract: The collection, use and distribution of human tissue samples have stressed the new pathways in which human body parts and related information are becoming productive. This article probes the question of how the concept of branding can elucidate the way historico-cultural narratives of origin and authenticity are coming to play an increasingly important role in leveraging populations as new types of scientific products. Using the notions of heritage and identity, geolocation, and scientific recognition, I argue that the branding of populations represents, not just novel ways of creating difference, but also provides new ways in which master narratives of population history are created. The processes by which genetic specificities of various populations and their concomitant samples are made productive vary, yet illustrate how narratives of genetics, national identity, group identity, and uniqueness in the medical sciences become intertwined with notions of productivity and bioeconomic potential.
... 11 Invoking human rights as the foundation for international data sharing efforts further coheres with the collective heritage of the human genome itself 12 that transcends claims of genomic sovereignty and biopolitics. 13 Moreover, scientists (and institutions) should be duly recognized for their contribution(s) to the greater understanding of the genome and their application toward improving human health. ...
The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. Worldwide representation of institutions, funders, researchers, and patient advocacy groups at the Global Alliance is testament to a shared ideal that sees maximizing the public good as a chief priority of genomic innovation in health. The Global Alliance has made a critical stride in this regard with the development of its Framework for Responsible Sharing of Genomic and Health-related Data.(1) This article first discusses the human rights pillars that underlie the Framework and mission of the Global Alliance. Second, it outlines the Global Alliance's use of data governance policies through a number of demonstration projects. Finally, the authors describe how the Global Alliance envisions international data sharing moving forward in the postgenomic era.
... Although biobanks are inherently and explicitly scientific infrastructures, they are implicitly economic ones too, in that many (particularly population-based biobanks) are presented as national political-economic assets. More specifically, they are framed as a national resource-primarily meant to benefit domestic business-and, concurrently, they involve framing national populations as a natural resource whose genomic characteristics and national health data can be exploited (Hinterberger, 2012;Hinterberger and Porter, 2015). ...
While biobanks are established explicitly as scientific infrastructures, they are de facto political-economic ones too. Many biobanks, particularly population-based biobanks, are framed under the rubric of the bio-economy as national political-economic assets that benefit domestic business, while national populations are framed as a natural resource whose genomics, proteomics, and related biological material and national health data can be exploited. We outline how many biobanks epitomize this 'neoliberal' form of science and innovation in which research is driven by market priorities (e.g., profit, shareholder value) underpinned by state or government policies. As both scientific and political-economic infrastructures, biobanks end up entangled in an array of problems associated with market-driven science and innovation. These include: profit trumping other considerations; rentiership trumping entrepreneurship; and applied research trumping basic research. As a result, there has been a push behind new forms of 'post-neoliberal' science and innovation strategies based on principles of openness and collaboration, especially in relation to biobanks. The proliferation of biobanks and the putative transition in both scientific practice and political economy from neoliberalism to post-neoliberalism demands fresh social scientific analyses, particularly as biobanks become further established in fields such as oral health and personalized dentistry. To the best of our knowledge, this is the first analysis of biobanks with a view to what we can anticipate from biobanks and distributed post-genomics global science in the current era of oral health biomarkers.
The question of whether a bioscientific product remains a product of nature, or whether it should be newly defined as a human invention, is a central problem in intellectual property cases. Through the prism of genes this chapter explores law’s property relation to nature. It engages the anthropological problem of exchange from the perspective of biolegality. We examine how debates around the patenting of human genes become more and more complex with the promises of synthetic biology and living modified organisms, and, finally, with the emergence of genetic sequencing and the proliferation of sequence data. Throughout we ask, is law simply accommodating these developments and regulating new technologies based on social values, policies, and ethical principles? Or is biological research and inventiveness redefining biology and reconfiguring how law understands nature?
Increasingly, countries in the Global South-notably South Africa, Brazil, and Indonesia-are introducing material transfer agreements (MTAs) into their domestic laws for the exchange of scientific material. The MTA is a contract securing the legal transfer of tangible research material between organizations such as laboratories, pharmaceutical companies, or universities. Critical commentators argue that these agreements in the Global North have come to fulfill an important role in the expansion of dominant intellectual property regimes. Taking Indonesia as a case, this article examines how MTAs are enacted and implemented differently in the context of research involving the Global South. Against the conventionally understood forms of contract that commodify and commercialize materials and knowledge, the MTA in the South can be understood as a legal technology appropriated to translate a formerly relational economy of the scientific gift to a market system of science. As a way of gaining leverage in the uneven space of the global bioeconomy, the MTA functions as a technology for 'reverse appropriation', a reworking of its usage and meaning as a way of countering some of the global power inequalities experienced by Global South countries. The operation of this reverse appropriation, however, is hybrid, and reveals a complex reconfiguration of scientific exchange amidst a growing push for 'open science'.
From the introduction: No one can doubt the current relevance of personalized medicine in Danish society. "The state will steal your DNA" and "Critique: DNA project is high risk” are but two catchy newspaper headlines from a heated public debate about the planned state-run national genome bank in Denmark, Nationalt Genom Center. What has spurred discussion is the government’s suggested organizational and ethical framework for collecting, banking, and using genomes from the Danish people as part of its realization of personalized medicine in Danish health care. The framing of "stealing" and the articulation of this project as "high risk" points to the discussion’s central issue of how to treat and administer genomes as concomitantly part of the "me" of the person and the "we" of the welfare state. Anthropology has a lot to offer in understanding the intertwining of the person and the collectivity. But before I discuss what anthropology can bring to personalized medicine and this question, let me begin with what anthropology is.
The current debate over the global distribution of COVID-19 vaccines once again highlights the many shortcomings of the modern intellectual property (IP) system, especially when it comes to equitable access to medicines. This essay argues that the (unspoken) conceptual center of struggles over access to new pharmaceuticals rests in the IP system's colonial legacy, which perceives the world as uncharted territory that is ripe for discovery and ownership. This vision of the world as a blank canvas, or terra nullius, sets aside any other models of ownership and devalues other traditional modes of relating to territory and nature. Several examples show the long-lasting exclusionary effects of this hidden legacy of colonial conquest in the field of public health, ranging from the spiraling price of insulin to the distribution of COVID-19 vaccines to the negotiation of sharing mechanisms for virus samples. In all of these cases, the continuing marginalization of other interests by the IP system can lead to exploitation, without either the “sources” of materials, such as those from whom the samples were taken, or the recipients of the eventual product having any say in matters of price and access. This legacy of fundamental exclusion needs to be recognized and addressed in order to arrive at more equitable solutions to public health emergencies such as the current pandemic.
Pronouns, particularly gendered pronouns, convey how apocalyptic futures are understood for differently positioned subjects. The “we” is not always about embracing a commons but can also be about extending exclusions. Drawing from social linguistics and the concept of shifters, science and technology studies and the ideas of symmetry, asymmetry, as well as the author’s ethnographic research at two orangutan rehabilitation centers on Borneo in present day Malaysia, this paper highlights the power of pronouns in imagining whose lives are at risk or endangered in a pending apocalypse, including the present Sixth Age of Extinction and popular fears about the end of the world.
In his introduction, Tupasela outlines the theoretical contours of population branding. Taking science and technology studies (STS) as his starting point, he locates his work at the intersection of critical data studies (CDS) and nation branding. Using examples from two Nordic countries—Denmark and Finland—he identifies changes during the past ten years that suggest that state-collected and maintained resources, such as biobank samples and healthcare data, have become the object of marketing practices. Tupasela argues that this phenomenon constitutes a novel form of nation branding in which relations between states, individuals, and the private sector are re-aligned. Population branding, which he identifies as originating in the field of medical genetics, has increasingly incorporated marketing practices developed in the private sector in order to market state-controlled resources. The exploration of population branding practices helps provide understanding of how state-controlled big data is increasingly being used to generate new forms of value.
Who gets to practice and participate in science? Research teams in Puerto Rico and New Zealand have each sequenced the genomes of parrot populations native to these locales: the iguaca and kākāpō, respectively. In both cases, crowdfunding and social media were instrumental in garnering public interest and funding. These forms of Internet-mediated participation impacted how conservation science was practiced in these cases and shaped emergent social roles and relations. As citizens “follow,” fund, and “like” the labor of conservation, they create new relational possibilities for and with science. For example, the researchers became newly engaged and engaging by narrating and displaying the parrots via an Internet-inflected aesthetic. The visibility of online modalities shifted accountabilities as researchers considered whom this crowdfunded work answered to and how to communicate their progress and results. The affordances of the Internet allowed researchers from the peripheries of the scientific establishment to produce genomic knowledge for globally dispersed audiences. The convergence of genomic and Internet technology here shaped scientific practice by facilitating new modes of participation—for laypeople in science but also for scientists in society.
Societal Impact Statement
The “Parts Agenda” is an approach to synthetic biology that fragments genetic resources into functional bioparts to help design and build biological devices and systems. Access and benefit‐sharing (ABS), and the issue of how to regulate digital sequence information (DSI) within the current ABS regime, poses a problem for synthetic biology because it assumes fragmented and abstracted bioparts can be traced to their country of origin for the purposes of benefit‐sharing, and that contributions to information and knowledge can be quantified and appropriately valued. Any DSI regulatory solutions should account for genetic resource fragmentation and other complexities of modern scientific practice.
Summary
The inclusion of digital sequence information (DSI, including genetic sequence data) in the existing access and benefit‐sharing (ABS) regime will alter the practice of synthetic biology. The potential impediments could be magnified for the “Parts Agenda”: the approach to synthetic biology that fragments genetic resources into their smallest functional units to create standardized, interchangeable “bioparts”, the building blocks for assembling synthetic biological devices. These biological devices are themselves interchangeable and can be used to engineer higher order synthetic biological systems.
This article examines how the extension of ABS laws to include DSI could foreseeably apply to the creation and use of plant‐derived and other bioparts in engineered biological devices expressed in plant chassis.
The article demonstrates that ABS issues will be similar for all approaches to synthetic biology, but that the Parts Agenda is uniquely exposed to the potential regulatory burden of bilateral ABS transactions between users and providers of genetic resources.
The original vision for bioparts was one of openness and sharing, with access and use unencumbered by intellectual property. This article shows that open access to bioparts will not last long if DSI is enclosed within the current ABS regime, destabilizing the values of openness and sharing in synthetic biology that are ostensibly foundational to this still developing field.
Scientists have identified southern China as a likely epicenter for viral pandemics, a place where new viruses emerge out of intensively farmed landscapes and human--animal interactions. In Virulent Zones, Lyle Fearnley documents the global plans to stop the next influenza pandemic at its source, accompanying virologists and veterinarians as they track lethal viruses to China's largest freshwater lake, Poyang Lake. Revealing how scientific research and expert agency operate outside the laboratory, he shows that the search for origins is less a linear process of discovery than a constant displacement toward new questions about cause and context. As scientists strive to understand the environments from which the influenza virus emerges, the unexpected scale of duck farming systems and unusual practices such as breeding wild geese unsettle research objects, push scientific inquiry in new directions, and throw expert authority into question. Drawing on fieldwork with global health scientists, state-employed veterinarians, and poultry farmers in Beijing and at Poyang Lake, Fearnley situates the production of ecological facts about disease emergence inside the shifting cultural landscapes of agrarian change and the geopolitics of global health.
https://research-repository.griffith.edu.au/handle/10072/382736
In 2007 the Indonesian government cited the United Nations’ Convention on Biological Diversity (CBD) when it claimed sovereignty over influenza viruses isolated from within its territory, denying the World Health Organization (WHO) access to physical samples of H5N1 influenza virus. In response, WHO Member States adopted the Pandemic Influenza Preparedness Framework (PIP Framework) for the sharing of influenza viruses with human pandemic potential. This ended the political stalemate between Indonesia and the WHO, but the international community never addressed the broader legal issue at the core of Indonesia’s claim: do countries have sovereign authority over viruses isolated from within their territories? Answering this question is the starting point of this thesis and is crucial to creating legal certainty for international virus sharing and defending global health security. Genetic resources were largely treated as global public goods under international law until the entry into force of the CBD in 1993. This binding and widely-adopted convention situates genetic resources within the sovereign domain of the Nation State, allowing national governments to regulate access to genetic resources pursuant to their own environmental policies. The domestic laws and policies implemented in the wake of the CBD have created a diverse and complicated regime for accessing genetic resources and sharing benefits associated with their utilisation, referred to as ‘access and benefit-sharing’ (ABS). Until the present research, it has not been clear how these rules apply to viruses outside the narrow remit of pandemic influenza viruses under the PIP Framework. Virus samples are essential for ecological, agricultural and medical research and are vital inputs for the production of vaccines and antivirals. Most viruses are still accessed freely from the environment and shared informally between networks of scientific colleagues without regard to the domestic ABS policies of originating Nation States. This is starting to change as States begin to restrict access to virus samples to exchange them for monetary or non-monetary benefits. This trend is likely to impact scientific research and the development of novel biotechnologies, but it has the most disturbing consequences in the field of public health, where international negotiations over access to pathogenic virus samples can delay outbreak response efforts. This research examines the legalities of claiming sovereignty over viruses under international law and represents the first systematic effort to situate viruses within the international ABS regime. This research aims to: (1) clarify the status of viruses under international ABS law, (2) examine the facets of the international ABS regime that will shape future virus sharing practices, and (3) determine the impact of virus ABS on virological research. It draws together the key themes of law, scientific research and viruses. The legal question originally posed by Indonesia in 2007 and restated here as the first aim of this research is addressed by means of a textual analysis of the CBD and its Nagoya Protocol. Chapter 2 (published in the European Intellectual Property Review) demonstrates that all viruses are unequivocally ‘genetic resources’ within the remit of these international instruments. This finding clarifies the previously ambiguous status of all viruses as sovereign genetic resources under international law and forms the theoretical basis for the preponderance of this research. In effect, influenza viruses with human pandemic potential are regulated by the PIP Framework and all other viruses are subject to regulation under the CBD and Nagoya Protocol. Four chapters of this thesis address the second aim of this research, examining the facets of the current international ABS regime that will shape future virus sharing arrangements. Chapter 3 (published in the Journal of Law and Medicine) analyses temporality and the conceivable extension of sovereign rights to virus isolates collected before the entry into force of the CBD on 29 December 1993, using the ex situ repositories of smallpox virus held by the United States of America and the Russian Federation as a case study. Chapters 4 and 5 (published in the Journal of Law and Medicine and the Journal of World Intellectual Property respectively) are the first published papers to examine how provisions of the CBD and Nagoya Protocol relating to ‘traditional knowledge associated with genetic resources’ apply to viruses. These chapters provide proof of principle that Indigenous Peoples and Local Communities could possess virus-associated traditional knowledge that can be subject to benefit-sharing obligations. Chapter 6 (published in The Milbank Quarterly) critiques the ABS provisions of the PIP Framework as the only international virus-specific de facto ABS instrument. The Nagoya Protocol creates the flexibility to adopt specialised instruments outside of the default bilateral ABS system created by the CBD and Nagoya Protocol. Chapter 6 demonstrates that while the PIP Framework may be considered a multilateral ABS agreement, it secures just the access side of the ABS ‘grand bargain’ enshrined by the CBD. Chapter 6 cautions against the current proposals to expand the scope of the PIP Framework to include other pathogens. Chapter 7 (published in the Journal of Science Policy and Governance) addresses the third aim of this research by examining how ABS measures have impacted scientific research in the biological disciplines. It shows how domestic legislative, administrative and policy measures implementing the CBD and Nagoya Protocol create legal barriers to accessing genetic resources for biological research and can limit scientific innovation. It demonstrates that ABS policies will have a cooling effect on biotechnological research utilising viral genetic resources if countries start to impose similar legal barriers to accessing virus samples. Chapter 8 concludes that the international ABS regime already fetters virus sharing with unforeseen adverse impacts on global health security. Scientists require access to virus samples for research and development, and timely access to viruses that can cause diseases in humans, plants and animals is critical. As countries start to exercise their sovereign authority over viruses and restrict access to virus samples in order to influence benefit-sharing negotiations, it is ever more important that the international community comprehends the form and structure of virus ABS. This thesis fills the literature void as the first published research to explore the legal and practical issues of accessing virus samples and sharing the benefits associated with their use under the CBD and Nagoya Protocol. Given the deficiencies of the current ABS regime, this research forms the basis for an international debate about alternative models for regulating access to viruses and sharing the associated benefits. During public health emergencies, legal ambiguities around who can control access to viruses and at what price can delay the public health response and ultimately cost lives.
This chapter examines what has happened to multicultural politics in light of the molecularisation of biology. While twenty-first-century biology has given way to approaches accentuating biological flexibility and plasticity through postgenomics and epigenetics, these new understandings of biological life have arisen alongside the global proliferation of race, ancestry and nationalisms in bioscientific research. In this chapter, I suggest that we might approach these developments through the frame of molecular multiculture to illuminate how human genome science has galvanised a new cultural politics of heredity where forms of multicultural inclusion intersect with democratic politics and the marketplace in large-scale genome science projects.
Viruses are beginning to be regarded as tradeable commodities and samples that were once freely available to researchers are attracting claims of national sovereignty. This article aims to clarify the international regulatory framework that governs the sharing of viruses. It argues that as “genetic resources” viruses sit within the scope of the Convention on Biological Diversity and its associated Nagoya Protocol, forming an imperfect framework for the transfer of viruses between Contracting Parties. The article concludes that the unique nature of viruses may necessitate a new or altered specialised access and benefit sharing instrument. In the meantime, researchers can no longer expect to access virus samples without first negotiating reciprocal benefits.
This report examines how social geography engages with nonhuman subjects; in this case, bugs. The report focuses on how social geography is rethinking its core concepts of difference and inequality through scholarship that examines the relations between bugs and human inequality, bug management and molecular intervention on/in bugs, and the biosocial relations bugs help forge. It does so while opening up what bugs – not just insects, but also a wider range of bugs, such as viruses, bacteria, and parasites operating within and beyond the human body – offer to our theorization and examination of everyday social life.
In this review essay, I explore the implications of renewed anthropological interest in materiality and the cultures that emerge from interaction among humans, nonhuman agents, and the material environment. Drawing upon sociocultural anthropology published primarily in 2015, I focus on five themes: cultures as emergent; bureaucracies in contemporary life; science, measurement, and state policy; affect and emotion in daily life; and multispecies and interspecies studies. Overall, the works I review illustrate the strength of anthropology in rendering visible the contradictions, trade-offs, and unlikely connections of lived experience in a material world. The works also show how cultures become real through people's actions and interactions with others. Nevertheless, sociocultural anthropology continues to face two enduring contradictions: first, attention to inequalities and disadvantages caused by existing structures versus an emphasis on the emergence and consequent unpredictability of social forms, and second, a view of humans as significant causal agents who can harm the natural world versus a perspective that sees humans as influenced by complex environments that include nature, nonhuman living beings, and inanimate objects.
Genetic studies aiming to reconstruct the history of human migrations have made a claim to be able to contribute to the writing of history, with a precision and time depth unavailable to any other discipline. However, recent in‐depth ethnographic studies of genetic science have shown that folk knowledge and traditional ways to understand the difference in diverse locales around the world are integral to the way in which genetics produce knowledge of the history of humanity. Precisely because genetic projects are closely linked to sociocultural ideas about the categorisation of identity, race and ethnicity, they have raised a number of controversial cultural and political issues. Although some studies have played a positive role in helping the researched communities to reaffirm their identity, other projects yielded results that contradicted local narratives of origin. Furthermore, such studies are likely to have important sociopolitical consequences for the claims of sovereignty, auto determination and identity of vulnerable communities.
Key Concepts
Population genetics typically refers to the study of the genetic structure of human groups deemed to share a common history, geography or culture.
Haplotype maps are graphic representations of chunks of DNA that are inherited from one generation to the next, and thus are considered to be of importance for medical and anthropological genetic research.
Medical population genomics works under the assumption that knowledge about the genetic structure of populations will eventually translate into a more ‘predictive, preventive and personalised medicine’ in which each individual will know about their propensities and resistance to certain diseases.
At the end of 2011, microbiologists created a scientific and media frenzy by genetically engineering mutant avian flu viruses that transmitted through the air between ferrets, the animal most widely used to model human flu. Though the studies offered new evidence of avian flu's pandemic potential, they were nevertheless restricted from publication because of concerns about their possible threat to human health and security. In this article, I examine the mutant flu controversy to show how nascent biosecurity regulations engender transformations in experimental systems; namely, in the use and interpretation of experimental organisms, and in the establishment of a culture of security among a globalizing community of scientists. Drawing on analyses of academic publications, interviews with microbiologists and biosecurity regulators, and ethnographic observations at a biosecure laboratory, I show how these experimental transformations are structured by the local demands of scientific production as well as by broader concerns about biosecurity made visible in formal and informal regulations on scientific conduct. I further argue that while the controversy signals unprecedented controls over publication in the biological sciences, such controls build upon and extend on-going shifts in scientific thought and practice in the wake of pandemic threats.
The importance of technology in global affairs is visible to the naked and uninitiated eye. Yet International Relations (IR) still lacks a more systematic and critical attention to the role of technological infrastructures in contemporary global governance dynamics. Here, we seek to prompt IR scholars to move ‘large technical systems’ (LTSs) from the contours of IR narratives to a centre stage, as they hold the potential to respond to pressing challenges for IR scholarship. Employing LTSs to respond to recent publications on the challenge that ‘global governance’ poses to IR, we highlight that an STS-IR encounter can, first, revitalise ‘grand questions’ at the heart of IR and, second, help coping with the complexity of global governance. While this encounter does not offer a ready-tailored panacea for the troubles of IR, a more systematic inquiry into LTSs is a powerful step beyond theoretical and methodological impasses, towards greater inter-disciplinary collaboration.
Global governance is in flux. Scholarship on the practice of global governance has reimagined it as a realm of disputes and confrontation, rather than one of interest-alignment within multilateral interstate forums. A profound sense of governance deficit is provoking critical reflection both within the corridors of power and among practitioners and scholars. A call within academic circles for renewed reflection on global governance as a practice-oriented scholarship has elicited varied responses from the international relation (IR) fraternity. In taking stock of the state of the art of ‘global governance theory’, a number of scholars have advocated for its revival to be grounded in the kind of critical reflection often absent from mainstream IR discussion. Others contest any meaningful demarcation between IR and global governance scholarship. This forum responds to a number of converging developments. Situating contributions broadly within the notion of an interregnum, it is a first cut towards a more innovative global governance research and practice-oriented agenda. We focus, in particular, on reframing the problematique of global governance from one dominated by multilateral interstate geopolitics, towards a critical reappraisal of both structure and political economy in light of the evident complexity of global governance systems.
The development of the One World, One Health agenda coincides in time with the appearance of a different model for the management of human-animal relations: the genetic manipulation of animal species in order to curtail their ability as carriers of human pathogens. In this paper we examine two examples of this emergent transgenic approach to disease control: the development of transgenic chickens incapable of shedding avian flu viruses, and the creation of transgenic mosquitoes refractory to dengue or malaria infection. Our analysis elaborates three distinctions between the One World, One Health agenda and its transgenic counterpoint. The first concerns the conceptualization of outbreaks and the forms of surveillance that support disease control efforts. The second addresses the nature of the interspecies interface, and the relative role of humans and animals in preventing pathogen transmission. The third axis of comparison considers the proprietary dimensions of transgenic animals and their implications for the assumed public health ethos of One Health programs. We argue that the fundamental difference between these two approaches to infectious disease control can be summarized as one between strategies of containment and strategies of competition. While One World, One Health programs seek to establish an equilibrium in the human-animal interface in order to contain the circulation of pathogens across species, transgenic strategies deliberately trigger a new ecological dynamic by introducing novel animal varieties designed to out-compete pathogen-carrying hosts and vectors. In other words, while One World, One Health policies focus on introducing measures of inter-species containment, transgenic approaches derive their prophylactic benefit from provoking new cycles of intra-species competition between GM animals and their wild-type counterparts. The coexistence of these divergent health protection strategies, we suggest, helps to elucidate enduring tensions and concerns about how humans should relate to, appraise, and intervene on animals and their habitats.
In this article two case studies are compared, Mexico and Colombia, in which the protection of 'genetic identities' has generated political and legal systems designed to avoid the unlawful appropriation of biological material and/or DNA in Latin America. The very idea that genetic patrimonies belong to nation-states or ethno-racial groups - framed as genomic sovereignty or the protection of a disappearing indigenous genetic heritage - is the product of a genetically reified understanding of human diversity, which we identify as 'biocoloniality'. By exploring the common tropes and imaginations with which biocoloniality has been articulated, we argue that governance mechanisms built around 'genetic identities' are ineffective in addressing the unequal power relations inherent in contemporary scientific and regulatory practice.
In the last decade, the organization of pharmaceutical research on neglected tropical diseases has undergone transformative change. In a context of perceived “market failure,” the development of new medicines is increasingly handled by public-private partnerships. This shift toward hybrid organizational models depends on a particular form of exchange: the sharing of proprietary assets in general and of intellectual property rights in particular. This article explores the paradoxical role of private property in this new configuration of global health research and development. Rather than a tool to block potential competitors, proprietary assets function as a lever to attract others into risky collaborative ventures; instead of demarcating public and private domains, the sharing of property rights is used to increase the porosity of that boundary. This reimagination of the value of property is connected to the peculiar timescape of global health drug development, a promissory orientation to the future that takes its clearest form in the centrality of “virtual” business models and the proliferation of strategies of deferral. Drawing on the anthropological literature on inalienable possessions, we reconsider property’s traditional exclusionary role and discuss the possibility that the new pharmaceutical “commons” proclaimed by contemporary global health partnerships might be the precursor of future enclosures.
If the 1990s was all about the information superhighway and the network society, then the first 10 years of the 21st century is perhaps best described as the decade of data. Actors in different enterprises worked feverishly to develop innovative database and data mining technologies for institutional goals such as marketing, social networking, and scientific discovery. These researchers and data entrepreneurs follow an emerging belief that gathering and mining massive amounts of digital data will give objective insight into human relations and provide authentic representations for decision-making. On the surface, the technologies used to mine big data have the appearance of value-free and neutral inquiry. However, as information entrepreneurs use database and data mining technologies to purposively organize the social world, this seeming neutrality obfuscates domain assumptions and leaves cultural values and practices of power unexamined. We investigate the role of communication and social shaping of database and data mining technologies in the institutional context of genome science to understand how various stakeholders (scientists, policy makers, social scientists, and advocates) articulate racialized meanings with biological, physical, and big data. We found a rise in the use of racial discourse that suggests race has a genetic foundation.
Anthropological approaches broaden and deepen our understanding of the finding that high levels of socioeconomic inequality correlate with worsened health outcomes across an entire society. Social scientists have debated whether such societies are unhealthy because of diminished social cohesion, psychobiological pathways, or the material environment. Anthropologists have questioned these mechanisms, emphasizing that fine-grained ethnographic studies reveal that social cohesion is locally and historically produced; psychobiological pathways involve complex, longitudinal biosocial dynamics suggesting causation cannot be viewed in purely biological terms; and material factors in health care need to be firmly situated within a broad geopolitical analysis. As a result, anthropological scholarship argues that this finding should be understood within a theoretical framework that avoids the pitfalls of methodological individualism, assumed universalism, and unidirectional causation. Rather, affliction must be understood as the embodiment of social hierarchy, a form of violence that for modern bodies is increasingly sublimated into differential disease rates and can be measured in terms of variances in morbidity and mortality between social groups. Ethnographies on the terrain of this neoliberal global health economy suggest that the violence of this inequality will continue to spiral as the exclusion of poorer societies from the global economy worsens their health-an illness poverty trap that, with few exceptions, has been greeted by a culture of indifference that is the hallmark of situations of extreme violence and terror. Studies of biocommodities and biomarkets index the processes by which those who are less well off trade in their long-term health for short-term gain, to the benefit of the long-term health of better-off individuals. Paradoxically, new biomedical technologies have served to heighten the commodification of the body, driving this trade in biological futures as well as organs and body parts.
This paper examines the notion of "translational research", which has become a dominant form of the institutionalization and practice of contemporary biomedicine, as an entry point into theorizing questions of knowledge, value and their articulations. We are interested in locating translational research in a conjuncture that is marked, on the one hand, by a "post-genomic" moment in the life sciences, and on the other hand, by the capitalization and globalization of biomedicine. We undertake this through reference to the historical trajectory of these movements. In the process, we argue for a consideration of knowledge in terms of its mobility, rather than simply in terms of its ability to produce "truth". These concerns with mobility, we suggest, articulate knowledge to and through value, whose own meanings and stakes come to matter in the process. We conclude that translational research in itself is just a signifier of a contemporary biomedicine that operates "in the trans", under the sign and context of various movements across domains that see the production, articulation and problematization of knowledge and value. This argument serves as an introduction and framing for the three essays in this Dossier. 1 Both authors have benefited greatly from discussions with Gail Davies, who also provided insightful comments and suggestions on a preliminary draft of this essay. Warm thanks also to Kaushik's Chicago colleagues and our collaborators in the K/V project (especially Judith Farquhar and John Kelly, who have provided a commentary for this Folio section). The Knowledge / Value workshop was supported by the
Nutritional epigenetics seeks to explain the effects of nutrition on gene expression. For social science, it is an area of life science whose analysis reveals a concentrated form of a wider shift in the understanding of food and metabolism. Rather than the chemical conversion of food to energy and body matter of classic metabolism, food is now also a conditioning environment that shapes the activity of the genome and the physiology of the body. It is thought that food in prenatal and early postnatal life impacts adult-onset diseases such as diabetes and heart disease; exposure to food is seen as a point of potential intervention in long-term health of individuals and populations. This article analyzes how food has become environment in nutritional epigenetics, with a focus on the experimental formalization of food. The experimental image of human life generated in rodent models, it is argued, generates concepts of food as a form of molecular exposure. This scientific discourse has profound implications for how food is perceived, manufactured and regulated, as well as for social theories and analyses of the social body that have a long history of imbrication with scientific models of metabolism.
Part detective story, part exposé, and part travelogue, this book investigates one of the signature biotechnology stories of our time and, in so doing, opens a window onto the high-speed, high-tech, and high-finance world of genome science. It investigates how deCODE Genetics, in Iceland, became one of the wealthiest, as well as one of the most scandalous, companies of its kind with its plan to use the genes and medical records of the entire Icelandic population for scientific research. Delving into the poetry of W. H. Auden, the novels of Halldór Laxness, and the perils of Keiko the killer whale, the book maps the contemporary genomics landscape at a time when we must begin to ask questions about what “life” is made of in the age of DNA, databases, and derivatives trading.
This chapter introduces the viruses—biological entities so small they are not even selves. It analyzes how viruses, although not autopoietic entities nor alive, promote healthy life by engaging in “cyclical symbioses.” It evaluates cyclical symbioses: how viruses move genes into and then out of living cells and whole organisms. This chapter shows that the recent insight into viruses and their potential in symbiosis as part of “self” offers exciting new possibilities for research. It suggests that viruses are still fundamental to genetic fusions across disparate taxa lineages and in the origin of sensation in cells and organisms.
Our genetic markers have come to be regarded as portals to the past. Analysis of these markers is increasingly used to tell the story of human migration; to investigate and judge issues of social membership and kinship; to rewrite history and collective memory; to right past wrongs and to arbitrate legal claims and human rights controversies; and to open new thinking about health and well-being. At the same time, in many societies genetic evidence is being called upon to perform a kind of racially charged cultural work: to repair the racial past and to transform scholarly and popular opinion about the "nature" of identity in the present. Genetics and the Unsettled Past considers the alignment of genetic science with commercial genealogy, with legal and forensic developments, and with pharmaceutical innovation to examine how these trends lend renewed authority to biological understandings of race and history. This unique collection brings together scholars from a wide range of disciplines biology, history, cultural studies, law, medicine, anthropology, ethnic studies, sociology to explore the emerging and often contested connections among race, DNA, and history. Written for a general audience, the book's essays touch upon a variety of topics, including the rise and implications of DNA in genealogy, law, and other fields; the cultural and political uses and misuses of genetic information; the way in which DNA testing is reshaping understandings of group identity for French Canadians, Native Americans, South Africans, and many others within and across cultural and national boundaries; and the sweeping implications of genetics for society today. © 2012 by Rutgers, The State University of New Jersey. All rights reserved.
On April 26, 1986, Unit Four of the Chernobyl nuclear reactor exploded in then Soviet Ukraine. More than 3.5 million people in Ukraine alone, not to mention many citizens of surrounding countries, are still suffering the effects. Life Exposed has been the standard-bearer in the anthropology of disaster and environmental crisis since it was first published in 2002--and it remains the most comprehensive examination of the complex political, scientific, and social circumstances that followed the 1986 Chernobyl nuclear disaster in Ukraine. Tracing the story from initial secrecy to post-Soviet attempts to compensate sufferers, Adriana Petryna takes readers into a world whose realities are far more stark than those described by policymakers and scientists. She asks: What happens to politics when government officials fail to inform citizens of real threats to life? And what are the moral and political consequences of remedies available in the wake of technological disasters? Through extensive research in state institutions, clinics, laboratories, and with affected families and workers of the so-called Zone, Petryna illustrates how the event and its aftermath have not only shaped the course of an independent nation but have made health a negotiated realm of entitlement. She tracks the emergence of a "biological citizenship" in which assaults on health become the coinage through which sufferers stake claims for biomedical resources, social equity, and human rights. Life Exposed provides an anthropological framework for understanding the politics of emergent democracies, the nature of citizenship claims, and everyday forms of survival as they are interwoven with the profound changes that accompanied the collapse of the Soviet Union. In a new introduction, Petryna reflects on the lessons of Chernobyl's "biological citizens" for recent disasters such as Japan's Fukushima nuclear accident, and shows how a social science of survival can orient knowledge and future response.
Who is a Native American? And who gets to decide? From genealogists searching online for their ancestors to fortune hunters hoping for a slice of casino profits from wealthy tribes, the answers to these seemingly straightforward questions have profound ramifications. The rise of DNA testing has further complicated the issues and raised the stakes. In Native American DNA, Kim TallBear shows how DNA testing is a powerful—and problematic—scientific process that is useful in determining close biological relatives. But tribal membership is a legal category that has developed in dependence on certain social understandings and historical contexts, a set of concepts that entangles genetic information in a web of family relations, reservation histories, tribal rules, and government regulations. At a larger level, TallBear asserts, the “markers” that are identified and applied to specific groups such as Native American tribes bear the imprints of the cultural, racial, ethnic, national, and even tribal misinterpretations of the humans who study them. TallBear notes that ideas about racial science, which informed white definitions of tribes in the nineteenth century, are unfortunately being revived in twenty-first-century laboratories. Because today’s science seems so compelling, increasing numbers of Native Americans have begun to believe their own metaphors: “in our blood” is giving way to “in our DNA.” This rhetorical drift, she argues, has significant consequences, and ultimately she shows how Native American claims to land, resources, and sovereignty that have taken generations to ratify may be seriously—and permanently—undermined. © 2013 by the Regents of the University of Minnesota. All rights reserved.
In the summer of 1991, population geneticists and evolutionary biologists proposed to archive human genetic diversity by collecting the genomes of "isolated indigenous populations." Their initiative, which became known as the Human Genome Diversity Project, generated early enthusiasm from those who believed it would enable huge advances in our understanding of human evolution. However, vocal criticism soon emerged. Physical anthropologists accused Project organizers of reimporting racist categories into science. Indigenous-rights leaders saw a "Vampire Project" that sought the blood of indigenous people but not their well-being. More than a decade later, the effort is barely off the ground. How did an initiative whose leaders included some of biology's most respected, socially conscious scientists become so stigmatized? How did these model citizen-scientists come to be viewed as potential racists, even vampires? This book argues that the long abeyance of the Diversity Project points to larger, fundamental questions about how to understand knowledge, democracy, and racism in an age when expert claims about genomes increasingly shape the possibilities for being human. Jenny Reardon demonstrates that far from being innocent tools for fighting racism, scientific ideas and practices embed consequential social and political decisions about who can define race, racism, and democracy, and for what ends. She calls for the adoption of novel conceptual tools that do not oppose science and power, truth and racist ideologies, but rather draw into focus their mutual constitution.
For centuries, medicine aimed to treat abnormalities. But today normality itself is open to medical modification. Equipped with a new molecular understanding of bodies and minds, and new techniques for manipulating basic life processes at the level of molecules, cells, and genes, medicine now seeks to manage human vital processes. The Politics of Life Itself offers a much-needed examination of recent developments in the life sciences and biomedicine that have led to the widespread politicization of medicine, human life, and biotechnology. Avoiding the hype of popular science and the pessimism of most social science, Nikolas Rose analyzes contemporary molecular biopolitics, examining developments in genomics, neuroscience, pharmacology, and psychopharmacology and the ways they have affected racial politics, crime control, and psychiatry. Rose analyzes the transformation of biomedicine from the practice of healing to the government of life; the new emphasis on treating disease susceptibilities rather than disease; the shift in our understanding of the patient; the emergence of new forms of medical activism; the rise of biocapital; and the mutations in biopower. He concludes that these developments have profound consequences for who we think we are, and who we want to be.
When People Come First critically assesses the expanding field of global health. It brings together an international and interdisciplinary group of scholars to address the medical, social, political, and economic dimensions of the global health enterprise through vivid case studies and bold conceptual work. The book demonstrates the crucial role of ethnography as an empirical lantern in global health, arguing for a more comprehensive, people-centered approach. Topics include the limits of technological quick fixes in disease control, the moral economy of global health science, the unexpected effects of massive treatment rollouts in resource-poor contexts, and how right-to-health activism coalesces with the increased influence of the pharmaceutical industry on health care. The contributors explore the altered landscapes left behind after programs scale up, break down, or move on. We learn that disease is really never just one thing, technology delivery does not equate with care, and biology and technology interact in ways we cannot always predict. The most effective solutions may well be found in people themselves, who consistently exceed the projections of experts and the medical-scientific, political, and humanitarian frameworks in which they are cast. When People Come First sets a new research agenda in global health and social theory and challenges us to rethink the relationships between care, rights, health, and economic futures.
All human life unfolds within a matrix of relations, which are at once social and biological. Yet the study of humanity has long been divided between often incompatible 'social' and 'biological' approaches. Reaching beyond the dualisms of nature and society and of biology and culture, this volume proposes a unique and integrated view of anthropology and the life sciences. Featuring contributions from leading anthropologists, it explores human life as a process of 'becoming' rather than 'being', and demonstrates that humanity is neither given in the nature of our species nor acquired through culture but forged in the process of life itself. Combining wide-ranging theoretical argument with in-depth discussion of material from recent or ongoing field research, the chapters demonstrate how contemporary anthropology can move forward in tandem with groundbreaking discoveries in the biological sciences.
In recent years, new disease threats—such as SARS, avian flu, mad cow disease, and drug-resistant strains of malaria and tuberculosis—have garnered media attention and galvanized political response. Proposals for new approaches to "securing health" against these threats have come not only from public health and medicine but also from such fields as emergency management, national security, and global humanitarianism.
This volume provides a map of this complex and rapidly transforming terrain. The editors focus on how experts, public officials, and health practitioners work to define what it means to "secure health" through concrete practices such as global humanitarian logistics, pandemic preparedness measures, vaccination campaigns, and attempts to regulate potentially dangerous new biotechnologies.
As the contributions show, despite impressive activity in these areas, the field of "biosecurity interventions" remains unstable. Many basic questions are only beginning to be addressed: Who decides what counts as a biosecurity problem? Who is responsible for taking action, and how is the efficacy of a given intervention to be evaluated? It is crucial to address such questions today, when responses to new problems of health and security are still taking shape. In this context, this volume offers a form of critical and reflexive knowledge that examines how technical efforts to increase biosecurity relate to the political and ethical challenges of living with risk.
This innovative ethnographic study animates the racial politics that underlie genomic research into type 2 diabetes, one of the most widespread chronic diseases and one that affects ethnic groups disproportionately. Michael J. Montoya follows blood donations from "Mexican-American" donors to laboratories that are searching out genetic contributions to diabetes. His analysis lays bare the politics and ethics of the research process, addressing the implicit contradiction of undertaking genetic research that reinscribes race's importance even as it is being demonstrated to have little scientific validity. In placing DNA sampling, processing, data set sharing, and carefully crafted science into a broader social context, Making the Mexican Diabetic underscores the implications of geneticizing disease while illuminating the significance of type 2 diabetes research in American life.
IntroductionMaking up the NationMaking Biological Citizens: From Public Value to BiovalueBiosociality: Active Biological CitizensPolitical Economies of Hope: Science, Citizenship, and the FutureProducing Biovalue: Materializing Ethics, Health, and WealthConclusion
Notes
What is life? A gathering consensus in anthropology, science studies, and philosophy of biology suggests that the theoretical object of biology, “life,” is today in transformation, if not dissolution. Proliferating reproductive technologies, along with genomic reshufflings of biomatter in such practices as cloning, have unwound the facts of life.1 Biotechnology, biodiversity, bioprospecting, biosecurity, biotransfer, and molecularized biopolitics draw novel lines of property and protection around organisms and their elements.2 From cultural theorists and historians of science we learn that life itself, consolidated as the object of biology around 1800, has morphed as material components of living things—cells and genes—that are rearranged and dispersed, and frozen, amplified, and exchanged within and across laboratories.3 Writers in philosophy, rhetoric, and cultural studies, meanwhile, claim that, as life has become the target of digital simulation and bioinformatic representation, it has become virtual, mediated, and multiple.4
While researchers collect and assemble relevant populations for genome studies, they are also, along with project designers and managers, interested in assembling publics. The public holds significant symbolic and discursive appeal for large-scale genome science. This is particularly the case in projects that collect or study aspects of human genome variation where histories of biological racism continue to cast a shadow over the promises of genomic medicine. In one of Canada's first large-scale biobanks, French Canadians, who are understood as a genetically close or homogenous population, are contrasted with what are referred to as ‘immigrants’ and ‘Québecers from various ethnic and racial backgrounds’ in public engagement and consultation forums. These latter groups, thought to provide a form of diversity, both in their views and their biology, are harnessed in the consultation practices as well as in the branding of the biobank. Within the local area of sample collection, the already constructed and available ways to categorise groups provide a powerful frame to narrate the relationship between the public and genome science. The process of making and consulting niche publics not only naturalises particular narratives of national belonging but also enables forms of exchange and sharing in international genome science. Just as assembling populations forms a central component of genome science, displays of publicness are integral for economies of exchange in genome science.
The essay deals with the final part of a project on the cultural history of heredity stretching from the early modern period to the present. The focus is on epistemological questions such as the establishment of genetics as a discipline, the phenotype/ genotype divide, and the relation between science and images of science on heredity. Three images of science connected to heredity are discussed: the image of the gene as an isolated entity, the image of information, and the image of map and mapping.
Outbreaks of SARS, swine flu, and avian influenza have prompted a “One Health” effort to control diseases transmitted between species. Using ethnographic observations from Nam, I reveal how avian flu transforms strategies for living in light of human vulnerability to animals. Positing a multispecies approach to biopower, I argue that techniques for safeguarding human–animal collectivities confront heterogeneous moral codes surrounding animals’ role in knowledge hierarchies, village economies, and notions of individual worth. This analysis provides a framework for reconceptualizing biopower in relation to emerging diseases and reenvisions the role of animals in the politics of life itself.
The molecular biological field of epigenetics has recently attracted attention not only in biology, but also in the broader scientific community and the popular press. Commentators paint a very heterogeneous picture with some arguing that epigenetics is nothing but another aspect of gene regulation, and others enthusiastically proclaiming a paradigmatic shift in developmental biology. This article analyses a particular approach to environmental epigenetics – a subfield of epigenetics that is central to the recent excitement. The focus lies on an ethnographic analysis of research practices that enable a particular lab group to study the impact of different levels of context, for example, changes in the social and material environment, on epigenetic modification and thus phenotypic variation. The article argues that changes in the practice of doing epigenetic biology contribute to a molecularisation of biography and milieu, suggest the configuration of somatic sociality and produce a different concept of the body: the embedded body. This article concludes with a brief discussion of customary biology as a potential new research agenda at the interface of material and social inquiry.
Introduction: The Human Genome Diversity Project 1. Technologies of populations: making differences and similarities between Turkish and Dutch males 3. Ten chimps in a laboratory: or how a human genetic marker may become a good genetic marker for typing chimps 4. Naturalisation of a reference sequence: Anderson or the Mitochondrial Eve of modern genetics 5. The traffic in males and other stories on the enactment of the sexes in studies of genetic lineage 6. Technologies of similarity and difference or how to do politics with DNA.
Public health responses to emerging infectious disease (EID) rarely try to interrupt the mobility of goods and information. Rather, designed under the rubric of "public health security," they extend the rationale of free circulation through efforts to intensify movement and communication between international agencies, national health (and defence) departments, and the pharmaceutical industry. In this way, public health security extends postliberal modes of transnational regulation. This article examines an unfolding scenario which is testing public health's fidelity to the ethos of international trade agreements: Indonesia has withdrawn from the World Health Organization's (WHO) "virus-sharing" scheme because WHO has facilitated the use of Indonesian samples of H5NI for the commercial development of potentially profitable vaccines without consultation with the Indonesian labs in which they originated. It has been argued that the Indonesian move is one that contests the current securitization of global health. However, I argue that what we are witnessing is the process of emergence of a distinct form of biological sovereignty in the form of rival global health security aggregates, each working to inject a new form of postliberal sovereignty into the field of global public health.
This article explores the contemporary scientific practice of human genome science in light of Michel Foucault’s articulation of the problem of population. Rather than transcending the politics of social categories and identities, human genome research mobilizes many different kinds of populations. How then might we aim to avoid overgeneralized readings of the refiguring of human difference in the life sciences and grapple with the multiple and contradictory logics of population classification? In exploring the study of human variation through the case of the ‘Quebec founder population’ at a private genome research laboratory in Canada, the article argues that the power to define and shape meanings of human variation and to organize vitality is not held by any one institution or form of scientific practice. While molecular genomics may be transforming conceptions of human difference, the laboratory is only one of many places where human genomic variation accrues value, meaning and relevance. Molecular configurations of human difference gain meaning through a traffic in populations that extends beyond the laboratory. In the case explored here this traffic in populations is constituted within a nexus of empire, national census practices and contemporary articulations of multicultural policies.
In the U.S.A., advocates of academic freedom—the ability to pursue research unencumbered by government controls—have long found sparring partners in government officials who regulate technology trade. From concern over classified research in the 1950s, to the expansion of export controls to cover trade in information in the 1970s, to current debates over emerging technologies and global innovation, the academic community and the government have each sought opportunities to demarcate the sphere of their respective authority and autonomy and assert themselves in that sphere. In this paper, we explore these opportunities, showing how the Social Contract for Science set the terms for the debate, and how the controversy turned to the proper interpretation of this compact. In particular, we analyze how the 1985 presidential directive excluding fundamental research from export controls created a boundary object that successfully demarcated science and the state, but only for a Cold War world that would soon come to an end. Significant changes have occurred since then in the governance structures of science and in the technical and political environment within which both universities and the state sit. Even though there have been significant and persistent calls for reassessing the Cold War demarcation, a new institutionalization of how to balance the concerns of national security and academic freedom is still only in its nascent stages. We explore the value of moving from a boundary object to a boundary organization, as represented in a proposed new governance body, the Science and Security Commission.
In what ways can it be said of the molecularization of life that it has made our biological existence a political concern in new ways? This essay examines two different answers to this question. The first, exemplified by the work of Nikolas Rose, suggests that the molecularization of life, together with the individualization of risk, has given rise to a new ‘somatic’ self, and a new ‘ethopolitical’ order in which our biological life has becomes our life's work. The second, most evident in growing concern over ‘biosecurity’, posits a vulnerable subject, thrown into an unpredictable molecular world characterized by exchange and circulation and full of ‘emergent’ risks. Whereas the former has arguably led to new forms of governmentality, and new kinds of pastoral power, this paper argues that the latter has been widley taken up as a justification for the global extension of forms of sovereign power whose purpose is to pre-empt certain biological futures in favour of others. An exclusive focus on the former not only risks leaving the latter unexamined, it may leave us unable to consider how the two are related.
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.
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We present a socio-legal analysis of the policy agenda known as genomic sovereignty in Mexico--in which the notion was first coined--and its translation into a national law of health aimed at regulating population genomics research in the country. Based in more than 2 years of participant observation we sustain that the notion of genomic sovereignty, aimed at protecting the "unique" genetic patterns of populations needs to be critically reassessed. The main problem with such notion is that there are no scientifically sound ways to delimit the genetic "uniqueness" of any population in the world. Arising from this dilemma it becomes increasingly clear that the patrimonial doctrines that have been used to regulate population genomics in Mexico are inoperative, and rather than creating a legal environment in which medical genomics can become a national public good, it has created a law that has been used to monopolise human genomic research in the country; making blood samples and data tool for dispute amongst scientific elites.