This article explores contemporary biopolitics in the light of Michel Foucault's oft quoted suggestion that contemporary politics calls `life itself' into question. It suggests that recent developments in the life sciences, biomedicine and biotechnology can usefully be analysed along three dimensions. The first concerns logics of control - for contemporary biopolitics is risk politics. The second concerns the regime of truth in the life sciences - for contemporary biopolitics is molecular politics. The third concerns technologies of the self - for (...) contemporary biopolitics is ethopolitics. The article suggests that, in these events, human beings have become `somatic individuals': personhood is increasingly being defined in terms of corporeality, and new and direct relations are established between our biology and our conduct. At the same time, this somatic and corporeal individuality has become opened up to choice, prudence and responsibility, to experimentation, to contestation and so to a politics of `life itself'. (shrink)

This article provides a history of private sector tracking technologies, examining how the advent of commercial surveillance centered around a logic of data capitalism. Data capitalism is a system in which the commoditization of our data enables an asymmetric redistribution of power that is weighted toward the actors who have access and the capability to make sense of information. It is enacted through capitalism and justified by the association of networked technologies with the political and social benefits of online community, (...) drawing upon narratives that foreground the social and political benefits of networked technologies. I examine its origins in the wake of the dotcom bubble, when technology makers sought to develop a new business model to support online commerce. By leveraging user data for advertising purposes, they contributed to an information environment in which every action leaves behind traces collected by companies for commercial purposes. Through analysis of primary source materials produced by technology makers, journalists, and business analysts, I examine the emergence of data capitalism between the mid-1990s and mid-2000s and its central role in the contemporary information economy. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

Current debates in science and technology studies emphasize that the bio-economy—or, the articulation of capitalism and biotechnology—is built on notions of commodity production, commodification, and materiality, emphasizing that it is possible to derive value from body parts, molecular and cellular tissues, biological processes, and so on. What is missing from these perspectives, however, is consideration of the political-economic actors, knowledges, and practices involved in the creation and management of value. As part of a rethinking of value in the bio-economy, this (...) article analyzes three key political-economic processes: financialization, capitalization, and assetization. In doing so, it argues that value is managed as part of a series of valuation practices, it is not inherent in biological materialities. (shrink)

In the policy discourses of the Organization for Economic Cooperation and Development and European Commission, modern biotechnology and the life sciences are represented as an emerging “bioeconomy” in which the latent value underpinning biological materials and products offers the opportunity for sustainable economic growth. This articulation of modern biotechnology and economic development is an emerging scholarly field producing numerous “bio-concepts.” Over the last decade or so, there have been a number of attempts to theorize this relationship between biotechnologies and their (...) capitalization. This article highlights some of the underlying ambiguities in these conceptualizations, especially in the fetishization of everything “bio.” We offer an alternative view of the bioeconomy by rethinking the theoretical importance of several key economic and financial processes. (shrink)

Beginning in the 20th century, scientific research came to be dominated by a growing class of credentialed, professional scientists who overwhelmingly displaced the learned amateurs of an earlier time. By the end of the century, however, the exclusive realm of professional scientists conducting research was joined, to a degree, by “citizen scientists.” The term originally encompassed non-professionals assisting professional scientists by contributing observations and measurements to ongoing research enterprises. These collaborations were especially common in the environmental sciences, where citizen scientists (...) participated in counting wildlife and measuring environmental conditions. Later, patient groups began to play a more active role in supporting clinical trials and collecting health records from affected individuals. (shrink)

Recent findings in epigenetics have been attracting much attention from social scientists and bioethicists because they reveal the molecular mechanisms by which exposure to socioenvironmental factors, such as pollutants and social adversity, can influence the expression of genes throughout life. Most surprisingly, some epigenetic modifications may also be heritable via germ cells across generations. Epigenetics may be the missing molecular evidence of the importance of using preventive strategies at the policy level to reduce the incidence and prevalence of common diseases. (...) But while this “policy translation” of epigenetics introduces new arguments in favor of public health strategies and policy-making, a more “clinical translation” of epigenetics is also emerging. It focuses on the biochemical mechanisms and epigenetic variants at the origin of disease, leading to novel biomedical means of assessing epigenetic susceptibility and reversing detrimental epigenetic variants. In this paper, we argue that the impetus to create new biomedical interventions to manipulate and reverse epigenetic variants is likely to garner more attention than effective social and public health interventions and therefore also to garner a greater share of limited public resources. This is likely to happen because of the current biopolitical context in which scientific findings are translated. This contemporary neoliberal “regime of truth,” to use a term from Michel Foucault, greatly influences the ways in which knowledge is being interpreted and implemented. Building on sociologist Thomas Lemke's Foucauldian “analytics of biopolitics” and on literature from the field of science and technology studies, we present two sociological trends that may impede the policy translation of epigenetics: molecularization and biomedicalization. These trends, we argue, are likely to favor the clinical translation of epigenetics—in other words, the development of new clinical tools fostering what has been called “personalized” or “precision” medicine. In addition, we argue that an overemphasized clinical translation of epigenetics may further reinforce this biopolitical landscape through four processes closely related to neoliberal pathways of thinking: the internalization and isolation of socioenvironmental determinants of health and increased opportunities for commodification and technologicalization of health care interventions. (shrink)

The development of genomics has dramatically expanded the scope of genetic research, and collections of genetic biosamples have proliferated in countries with active genomics research programs. In this essay, we consider a particular kind of collection, national biobanks. National biobanks are often presented by advocates as an economic ‘‘resource’’ that will be used by both basic researchers and academic biologists, as well as by pharmaceutical diagnostic and clinical genomics companies. Although national biobanks have been the subject of intense interest in (...) recent social science literature, most prior work on this topic focuses either on bioethical issues related to biobanks, such as the question of informed consent, or on the possibilities for scientific citizenship that they make possible. We emphasize, by contrast, the economic aspect of biobanks, focusing specifically on the way in which national biobanks create biovalue. Our emphasis on the economic aspect of biobanks allows us to recognize the importance of what we call clinical labor—that is, the regularized, embodied work that members of the national population are expected to perform in their role as biobank participants—in the creation of biovalue through biobanks. Moreover, it allows us to understand how the technical way in which national biobanks link clinical labor to databases alters both medical and popular understandings of risk for common diseases and conditions. (shrink)

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical Science and Technology Studies lens, it examines the (...) way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values. (shrink)

This article shows how activists in the open data movement re-articulate notions of democracy, participation, and journalism by applying practices and values from open source culture to the creation and use of data. Focusing on the Open Knowledge Foundation Germany and drawing from a combination of interviews and content analysis, it argues that this process leads activists to develop new rationalities around datafication that can support the agency of datafied publics. Three modulations of open source are identified: First, by regarding (...) data as a prerequisite for generating knowledge, activists transform the sharing of source code to include the sharing of raw data. Sharing raw data should break the interpretative monopoly of governments and would allow people to make their own interpretation of data about public issues. Second, activists connect this idea to an open and flexible form of representative democracy by applying the open source model of participation to political participation. Third, activists acknowledge that intermediaries are necessary to make raw data accessible to the public. This leads them to an interest in transforming journalism to become an intermediary in this sense. At the same time, they try to act as intermediaries themselves and develop civic technologies to put their ideas into practice. The article concludes with suggesting that the practices and ideas of open data activists are relevant because they illustrate the connection between datafication and open source culture and help to understand how datafication might support the agency of publics and actors outside big government and big business. (shrink)

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. (shrink)

BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...) medical risk factors. Consumers could still obtain the genetic ancestry report, but they no longer had access to the genetic health report in the United States. However, this did not prevent the company from continuing its health research, with previously obtained and future samples, provided that consent had been obtained from the consumers concerned, or with health reports for individuals from other countries. Furthermore, 23andMe was granted FDA authorization on February 19, 2015, first to provide reports about Bloom syndrome carrier status, and, more recently, to provide consumers with “carrier status” information for 35 genes known to cause disease.DiscussionIn this Debate, we highlight the likelihood that the primary objective of the company was probably two-fold: promoting itself within the market for predictive testing for human genetic diseases and ancestry at a low cost to consumers, and establishing a high-value database/biobank for research and personal information).SummaryBy dint of this marketing approach, a two-sided market has been established between the consumer and the research laboratories, involving the establishment of a database/DNA biobank for scientific and financial gain. We describe here the profound ethical issues raised by this setup. (shrink)

This study analyzes the increasing presence and capabilities of wearable computing devices in the cornucopia of personalized digital data. We argue that the institutional data practices typical of Google Glass will pose policy challenges and herald yet another dramatic shift to personalized data marketing. We also highlight the characteristics of Google’s existing synergetic data practices that will shape the development of not only Google Glass, but also all subsequent wearable mobile devices in light of 360-degree data collection. The key organizing (...) concept of our study is the disjuncture between institutional and policy forces in harnessing dual market mechanism, which frames how the new communication industry operates in the marketplace of ubiquitous personal advertising. We conclude by summarizing the three key areas of political-policy concern and suggest future solutions, with the discussion on the future of wearable computing practices related to the freedom of the human body. (shrink)

A wide array of phenomena lumped together under the rubric of the ?commercialization of science,? the ?commodification of research,? and the ?marketplace of ideas? are both figuratively and literally Ponzi schemes. This thesis grows out of my experience of working on two concurrent projects: the first, an attempt to understand the forces behind the progressive commercialization of science; and the second, when it dawned upon me that the financial crisis then unfolding was resulting in the deepest worldwide economic contraction since (...) the Great Depression of the 1930s. This lecture explores the parallels in three different areas: the biotech sector, technology transfer offices at major universities, and possible decline of numbers of American-authored papers in major science journals. (shrink)

This article introduces the concept of economic medicalization where non-medical problems are transformed into medical problems in order to achieve the objective of corporate shareholder wealth maximization. Following an overview of the differences in ethical norms applicable to medical ethics and business ethics, the economic medicalization of medical research practice and publication is examined in some detail. This motivates a general discussion of the problems involved in the ethical approval process for medical research that balances the interests of both business (...) and government in the market for medical products and services. (shrink)

Genetic testing is currently subject to little oversight, despite the significant ethical issues involved. Repeated recommendations for increased regulation of the genetic testing market have led to little progress in the policy arena. A 2005 Internet search identified 13 websites offering health-related genetic testing for direct purchase by the consumer. Further examination of these sites showed that overall, biotech companies are not providing enough information for consumers to make well-informed decisions; they are not consistently offering genetic counseling services; and some (...) sites even offer tests with little evidence of clinical value. This article aims to raise company and consumer awareness about the ethical concerns surrounding the direct-to-consumer marketing of health-related genetic tests. It also suggests ways that biotech companies can bring their services to the public in an ethically responsible manner, without increased regulatory oversight. (shrink)

Large-scale genetics cohort studies that link genotypic and phenotypic information hold special promise for clinical medicine, but they demand long-term investment and enduring trust from human research participants. Currently, there are a handful of large-scale studies that aim to succeed where others have failed, seeking to generate significant private-sector investment while preserving long-term interest and trust of studied communities. With project planners looking for new modes of managing such complex collective endeavors, the idea of using a charitable trust structure for (...) genomic biobanks has received increasing scholarly and policy attention. This article clarifies how thorny questions around property rights, the right to withdraw from research, access to materials, and funding might be handled within such a charitable trust structure to help produce a viable participatory framework for genomics. (shrink)

Public discussions of ethical issues related to the biotechnology industry tend to treat "biotechnology" as a single, undifferentiated technology. Similarly, the pros and cons associated with this entire sector tend to get lumped together, such that individuals and groups often situate themselves as either "pro-" or "anti-" biotechnology as a whole. But different biotechnologies and their particular application context pose very different challenges for ethical corporate decision-making. Even within a single product category, different specialty products can pose strikingly different ethical (...) challenges. In this paper, we focus on the single over-arching category of "genetic testing" and compare tests for disease susceptibility and drug response. We highlight the diversity of ethical challenges - grouped under the broad categories of "truth in advertising" and "protecting intellectual property" - raised by the commercialization and marketing of these technologies. By examining social and technical differences between genetic tests, and the associated corporate ethics challenges posed by their commercialization, our intent is to contribute to the nascent business ethics literature examining issues raised by the development and marketing of genetic tests. (shrink)

Drawing on the sociology of expectations and sociology of conventions, this paper explores issues of worth and value in the bioeconomy, and the promissory character of contemporary capitalism. Arguing that the literature on biocapital has paid insufficient attention to geographical differentiation in capital accumulation strategies, this paper situates the consumer genomics firm 23andme in the entrepreneurial culture of Silicon Valley. The paper suggests that in Silicon Valley the relationship between moral worth and economic value is mediated through the concept of (...) disruptive innovation, which functions as both ideological construct and a set of commercial practices utilized by the founders of start-up firms and the venture capitalists who invest in them. Analyzing 23andme’s status as a “unicorn” firm, the paper describes how the recent increase in private investment capital in Silicon Valley has led to a new model of business development for start-ups and considers its implications for corporate governance. (shrink)

This study examines direct-to-consumer genetic testing (DTCGT) in the UK using the Social Construction of Technology framework to draw conclusions about how commercial genotyping is being shaped by principal groups involved with the technology. Different tests are available including single nucleotide polymorphism genotyping for ancestry and health information, the latter being the focus of this study. I conducted interviews with DTCGT users, and genetics clinicians who had either been consulted about DTCGT or who were willing to discuss their views. This (...) paper is about one of the study’s three themes, the NHS. DTCGT seemed to provide a point of focus for conflict between personalized and collective medicine in the UK, rather than being its cause. This suggests that DTCGT is more likely to achieve stability by virtue of being superseded by new technologies, rather than by achieving closure. (shrink)

Technologies can be not only contentious—overthrowing existing ways of doing things—but also morally contentious—forcing deep reflection on personal values and societal norms. This article investigates that what may impede the acceptance of a technology and/or the development of the field that supports or exploits it, the lines between which often become blurred in the face of morally contentious content. Using a unique dataset with historically important timing—the United States Biotechnology Study fielded just 9 months after the public announcement of the (...) successful cloning of the first mammal (i.e., Dolly the sheep)—we find that microlevel factors (i.e., conservative Christianity) predict unfavorable judgments of the technology-field intersection while macrolevel representations [i.e., exposure to Science, Technology, Engineering, and Mathematics disciplines and media coverage] predict more favorable judgments. (shrink)