Recent accounts of “the biological” emphasize its thoroughgoing transformation. Accounts of biomedicalization, biotechnology, biopower, biocapital, and bioeconomy tend to agree that twentieth- and twenty-first-century life sciences transform the object of biology, the biological. Amidst so much transformation, we explore attempts to stabilize the biological through standards. We ask: how do standards handle the biological in transformation? Based on ethnographic research, the article discusses three contemporary postgenomic standards that classify, construct, or identify biological forms: the Barcoding of Life Initiative, the BioBricks (...) Assembly Standard, and the Proteomics Standards Initiative. We rely on recent critical analyses of standardization to suggest that any attempt to attribute a fixed property to the biological actually multiplies dependencies between values, materials, and human and nonhuman agents. We highlight ways in which these biological standards cross-validate life forms with forms of life such as publics, infrastructures, and forms of disciplinary compromise. Attempts to standardize the biological, we suggest, offer a good way to see how a life form is always also a form of life. (shrink)

Recent books, articles and plays about the ‘immortal’ HeLa cell line have prompted renewed interest in the history of tissue culture methods that were first employed in 1907 and became common experimental tools during the twentieth century. Many of these sources claim tissue cultures like HeLa had a “troubled past” because medical researchers did not seek informed consent before using tissues in research, contravening a long held desire for self-determination on the part of patients and the public. In this article, (...) I argue these claims are unfair and misleading. No professional guidelines required informed consent for tissue culture during the early and mid twentieth century, and popular sources expressed no concern at the widespread use of human tissues in research. When calls for informed consent did emerge in the 1970s and 1980s, moreover, they reflected specific political changes and often emanated from medical researchers themselves. I conclude by arguing that more balanced histories of tissue culture can make a decisive contribution to public debates today: by refuting a false dichotomy between science and its publics, and showing how ethical concepts such as informed consent arise from a historically specific engagement between professional and social groups. (shrink)

There has been a great deal of discussion about the ethical implications of donating sperm and of the ways in which donated tissue is presented, selected, and sold for use in assisted reproduction. Debates have emerged within the academic sphere, from donor offspring and recipients, and in broader popular culture, including questions about the commodification of human tissue and the eugenic potential of selecting donors from particular demographic categories. However, the voices of donors themselves on this subject have been largely (...) silent. This paper draws on data from qualitative interviews with men who donated at a major Danish sperm bank between 2012 and 2013. It argues that many of them are indeed thinking through these complex issues. Donors’ approaches to ethical issues fell into two broad ‘types’: a pragmatic, individualistic approach which focused on more immediate personal consequences, and an ethically-driven approach in which donors considered the impact of donation on offspring and on a wider societal level. (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)

Ist Biologie das jüngste Mitglied in der Familie von Big Science? Die vermehrte Zusammenarbeit in der biologischen Forschung wurde in der Folge des Human Genome Project zwar zum Gegenstand hitziger Diskussionen, aber Debatten und Reflexionen blieben meist im Polemischen verhaftet und zeigten eine begrenzte Wertschätzung für die Vielfalt und Erklärungskraft des Konzepts von Big Science. Zur gleichen Zeit haben Wissenschafts- und Technikforscher/innen in ihren Beschreibungen des Wandels der Forschungslandschaft die Verwendung des Begriffs Big Science gemieden. Dieser interdisziplinäre Artikel kombiniert eine (...) begriffliche Analyse des Konzepts von Big Science mit unterschiedlichen Daten und Ideen aus einer Multimethodenuntersuchung mehrerer großer Forschungsprojekte in der Biologie. Ziel ist es, ein empirisch fundiertes, nuanciertes und analytisch nützliches Verständnis von Big Biology zu entwickeln und die normativen Debatten mit ihren einfachen Dichotomien und rhetorischen Positionen hinter sich zu lassen. Zwar kann das Konzept von Big Science als eine Mode in der Wissenschaftspolitik gesehen werden – inzwischen vielleicht sogar als ein altmodisches Konzept –, doch lautet meine innovative Argumentation, dass dessen analytische Verwendung unsere Aufmerksamkeit auf die Ausweitung der Zusammenarbeit in den Biowissenschaften lenkt. Die Analyse von Big Biology zeigt Unterschiede zu Big Physics und anderen Formen von Big Science, namentlich in den Mustern der Forschungsorganisation, der verwendeten Technologien und der gesellschaftlichen Zusammenhänge, in denen sie tätig ist. So können Reflexionen über Big Science, Big Biology und ihre Beziehungen zur Wissensproduktion die jüngsten Behauptungen über grundlegende Veränderungen in der Life Science-Forschung in einen historischen Kontext stellen. (shrink)

ZusammenfassungIst Biologie das jüngste Mitglied in der Familie von Big Science? Die vermehrte Zusammenarbeit in der biologischen Forschung wurde in der Folge des Human Genome Project zwar zum Gegenstand hitziger Diskussionen, aber Debatten und Reflexionen blieben meist im Polemischen verhaftet und zeigten eine begrenzte Wertschätzung für die Vielfalt und Erklärungskraft des Konzepts von Big Science. Zur gleichen Zeit haben Wissenschafts- und Technikforscher/innen in ihren Beschreibungen des Wandels der Forschungslandschaft die Verwendung des Begriffs Big Science gemieden. Dieser interdisziplinäre Artikel kombiniert eine (...) begriffliche Analyse des Konzepts von Big Science mit unterschiedlichen Daten und Ideen aus einer Multimethodenuntersuchung mehrerer großer Forschungsprojekte in der Biologie. Ziel ist es, ein empirisch fundiertes, nuanciertes und analytisch nützliches Verständnis von Big Biology zu entwickeln und die normativen Debatten mit ihren einfachen Dichotomien und rhetorischen Positionen hinter sich zu lassen. Zwar kann das Konzept von Big Science als eine Mode in der Wissenschaftspolitik gesehen werden – inzwischen vielleicht sogar als ein altmodisches Konzept –, doch lautet meine innovative Argumentation, dass dessen analytische Verwendung unsere Aufmerksamkeit auf die Ausweitung der Zusammenarbeit in den Biowissenschaften lenkt. Die Analyse von Big Biology zeigt Unterschiede zu Big Physics und anderen Formen von Big Science, namentlich in den Mustern der Forschungsorganisation, der verwendeten Technologien und der gesellschaftlichen Zusammenhänge, in denen sie tätig ist. So können Reflexionen über Big Science, Big Biology und ihre Beziehungen zur Wissensproduktion die jüngsten Behauptungen über grundlegende Veränderungen in der Life Science-Forschung in einen historischen Kontext stellen. (shrink)

This paper investigates the question of what an organ is from a phenomenological perspective. Proceeding from the phenomenology of being-in-the-world developed by Heidegger in Being and Time and subsequent works, it compares the being of the organ with the being of the tool. It attempts to display similarities and differences between the embodied nature of the organs and the way tools of the world are handled. It explicates the way tools belong to the totalities of things of the world that (...) are ready to use and the way organs belong to the totality of a bodily being able to be in this very world. In so doing, the paper argues that while the organ is in some respects similar to a bodily tool, this tool is nonetheless different from the tools of the world in being tied to the organism as a whole, which offers the founding ground of the being of the person. However, from a phenomenological point of view, the line between organs and tools cannot simply be drawn by determining what is inside and outside the physiological borders of the organism. We have, from the beginning of history, integrated technological devices (tools) in our being-in-the-world in ways that make them parts of ourselves rather than parts of the world (more organ- than tool-like), and also, more recently, have started to make our organs more tool-like by visualising, moving, manipulating, and controlling them through medical technology. In this paper, Heidegger’s analysis of organ, tool, and world-making is confronted with this development brought about by contemporary medical technology. It is argued that this development has, to a large extent, changed the phenomenology of the organ in making our bodies more similar to machines with parts that have certain functions and that can be exchanged. This development harbours the threat of instrumentalising our bodily being but also the possibility of curing or alleviating suffering brought about by diseases which disturb and destroy the normal functioning of our organs. (shrink)

Three metaphors appear to guide contemporary thinking about organ transplantation. Although the gift is the sanctioned metaphor for donating organs, the underlying perspective from the side of the state, authorities and the medical establishment often seems to be that the body shall rather be understood as a resource . The acute scarcity of organs, which generates a desperate demand in relation to a group of potential suppliers who are desperate to an equal extent, leads easily to the gift’s becoming, in (...) reality, not only a resource, but also a commodity . In this paper, the claim is made that a successful explication of the gift metaphor in the case of organ transplantation and a complementary defence of the ethical primacy of the giving of organs need to be grounded in a philosophical anthropology which considers the implications of embodiment in a different and more substantial way than is generally the case in contemporary bioethics. I show that Heidegger’s phenomenology offers such an alternative, with the help of which we can understand why body parts could and, indeed, under certain circumstances, should be given to others in need, but yet are neither resources nor properties to be sold. The phenomenological exploration in question is tied to fundamental questions about what kind of relationship we have to our own bodies, as well as about what kind of relationship we have to each other as human beings sharing the same being-in-the-world as embodied creatures. (shrink)

Objectification is a real problem in medicine that can lead to bad medical practice or, in the worst case, dehumanization of the patient. Nevertheless, objectification also plays a major and necessary role in medicine: the patient’s body should be viewed as a biological organism in order to find diseases and be able to cure them. Listening to the patient’s illness story should not be replaced, but, indeed, developed by the physical examination of his body searching for the causes of his (...) complaints. Whereas phenomenologists have so far mainly been identifying the back sides of objectification in medicine, in this paper the aim is to analyze differences between detrimental objectifications and objectifications that do not deprive the patient of his subjectivity but, rather, at least in some cases, may lead the patient to feel more at home with his body. (shrink)

One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data (...) practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories. (shrink)

Blood supplies have become indexes of national security and the public good. While blood shortages can provoke anxiety, controversies continue to erupt in many countries over proper donor screening, especially with reference to HIV. This article sketches these dynamics in several global settings, focusing especially on activist efforts by gay men to reform exclusionary blood donor guidelines. The contours of the debate recall familiar conflicts between the putative demands of public health and the rights of individuals in the era of (...) AIDS. However, if gay activists marshal a discourse of individual rights vis-a-vis forms of institutional exclusion, they also seek a broader shift in social and cultural understandings of gay identity. To capture this complex interplay of citizenship and sociality, risk and responsibility, the article introduces the notion of `vital publics' to refer to the peculiar associational form represented by blood supplies. Vital publics are kinds of embodied association elicited through the generalized exchange of body — in this case, blood. Hailed to `give life' by the jargon of the pervasive social marketing of varied blood service systems, activists seek to contribute to the life of the `vital public' that transfusion medicine calls into being. (shrink)

Zelizer’s work may be read as an attack on the central Polanyian thesis: that the market system threatens social life by the undue prominence it lends the economy in the organization of modern society. The recent publication of Viviana Zelizer’s The Purchase of Intimacy (2005a) is therefore an excellent opportunity to review the general trend of her work Zelizer 1979, 1985, 1994, and contrast her leading ideas to the central thesis that gives Polanyi’s work its particular flavor: the danger encapsulated (...) in the use of modern money and the functioning of the market system. (shrink)

Unanticipated situations can arise in biobanking. This paper empirically documents unexpected situations at the anonymous biobank ‘Xbank’. Firstly, Xbank received an unexpected and significant quantity of tissue from the historical archive of a hospital network. Secondly, Xbank had its funding withdrawn before the designated end date for the grant, meaning the bank needed to either re-house or destroy its holdings. This paper articulates and uses the theoretical frameworks of bio-objectification and tissue economies to analyse the experiences of Xbank and draw (...) out further implications of the potential precariousness of biobanking practice. The case study allows an inspection of how the value of tissue is configured and reconfigured as institutional contexts shift. We introduce the notion of momentariness as a way of grappling with the related temporariness and perpetualness of biobanking practice in both a theoretical and practical policy context. (shrink)

Blood is now essential for a widening repertoire of therapies and with this comes new forms of regulation and governmentality focused on the collection, use and storage of blood. Here blood begins to lose its `natural' underpinnings as it is drawn into the realms of the synthetic and the scientific. However, this change in theoretical lens obscures the ways that, in practice, constructing a `modern' blood compatible with the demands of the global biopolis is elided with prosaic uses of blood (...) donation that convey powerful cultural and political messages at the local level. In a setting where, in recent decades, war, violence and the threat of social disintegration have been woven into the project of development and modernity, attempts at an alignment, or what might be characterized as the haemato-global assemblage, reveal significant tensions. The main one that I explore in this article is that between the aspiration to create an international blood donation service in which ideas of citizens and national solidarity are articulated through freely and altruistically gifted blood on the one hand and, on the other, the more potent and symbolically loaded ideas of blood, which come to the fore when connection and identity are threatened. (shrink)

Within the context of applied bioethical reasoning, various conceptions of the human body are focused upon by the author in relation to normative notions of autonomy.

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made (...) by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface. (shrink)

The debate over financial incentives and market models for organ procurement represents a key trend in recent bioethics. In this paper, we wish to reassess one of its central premises—the idea of organ shortage. While the problem is often presented as an objective statistical fact that can be taken for granted, we will take a closer look at the underlying framework expressed in the common rhetoric of “scarcity”, “shortage” or “unfulfilled demand”. On the basis of theoretical considerations as well as (...) a socioempirical examination of public attitudes, we will argue that this rhetoric has an economic subtext that imbues the debate with normative premises that have far-reaching social and ethical consequences and need to be made explicit and discussed. (shrink)

Although excess blood collection has characterized U.S. national disasters, most dramatically in the case of September 11, periodic shortages of blood have recurred for decades. In response, I propose a new model of medical philanthropy, one that specifically uses charitable contributions to health care as blood donation incentives. I explain how the surge in blood donations following 9/11 was both transient and disaster-specific, failing to foster a greater continuing commitment to donate blood. This underscores the importance of considering blood donation (...) incentives. I defend charitable incentives as an alternative to financial incentives, which I contend would further extend neoliberal market values into health care. I explain my model's potential appeal to private foundations or public–private partnerships as a means for expanding both the pool of blood donors and the prosocial benefit of each act of blood donation. Finally I link my analysis to the empirical literature on blood donation incentives. (shrink)

One of the most intriguing bio-objects in the emerging field of regenerative medicine is umbilical cord blood. Employed in existing haematological therapies, but also loaded with potentialities for future uses, cord blood has been lately the focus of a regulatory debate which confronts public and private forms of biobanking. This article explores the political and anthropological side of this debate, describing the ways in which different health practices related to the umbilical cord (and to its symbolic sibling, the placenta) have (...) been involved in processes of societal production and reproduction. Through the use of ethnological and historical data, and their comparison with current practices, I contend that the technical manipulation of cords and placentas goes much longer into the past than what a first glance suggests, and that these two objects can be understood as biological spaces in which forms of social belonging and versions of the societal bond are at play. The current conflict between public and private cord blood banks is therefore interpreted as part of a longer history of bodily practices, and as reflecting recent mutations in the biopolitical constitution of advanced liberal societies. (shrink)

Assisted reproductive technology is a global market engaging a variety of local moral economies where the construction of the demand–supply relationship takes different forms through the operation of the politics of value. This paper analyzes how the market–culture relationship works in different settings, showing how power and resources determine what value will, or will not, accrue from that relationship. A commodity’s potential economic value can only be realized through the operation of the market if its cultural status is seen to (...) be legitimate. At the same time, local moral economies and their associated social orders are potentially susceptible to the destabilizing implications of new commodities. The formal or informal organization of power relationships in the market–culture interaction can enable potential value to become manifest and tangible over time or block its path. The interaction is steered through national institutional sources of cultural authority embedded in state and religion, where the visible contest in the politics of value is conducted. Increasingly, that interaction finds its expression in transnational institutions of governance where the struggle for control of the cultural agenda reflects the global nature of the ART market. (shrink)

The bioeconomy is becoming increasingly prominent in policy and scholarly literature, but critical examination of the concept is lacking. We argue that the bioeconomy should be understood as a political project, not simply or primarily as a technoscientific or economic one. We use a conceptual framework derived from the work of Karl Polanyi to elucidate the politically performative nature of the bioeconomy through an analysis of an influential Organization for Economic Cooperation and Development initiative, The Bioeconomy to 2030. We argue (...) that this initiative is a response to some of the most acute challenges facing the current neoliberal-capitalist accumulation regime, which seeks to protect and extend that regime, through both what it occludes and what it promotes. Rather than taking the bioeconomy as a description of some subset of economic activity, we regard it as a promissory construct that is meant to induce and facilitate some actions while deterring others; most explicitly, it is meant to bring about a particular set of political–institutional changes that will shape the parameters of possible future action. The bioeconomy concept highlights the potential dangers of failing to situate ethnographic examinations of horizontal micro-relations within a political–economic macro-context that enables and constrains. Scholarly work in science and technology studies and elsewhere that does not recognize the wider politics of the bioeconomy risks unintentionally contributing to the legitimation of this political project. (shrink)

In this article, I discuss cross-border egg provision by young South African women as a form of traveling biolabor that is critically about embodiment, and aspirations for mobility and cosmopolitanism. The frame of biolabor challenges the frames of altruism/commodification, and choice/coercion, and instead highlights the desires of egg providers, fundamental to the creation and maintenance of the global fertility market. When biolabor crosses borders as traveling biolabor, the analysis can focus on the specificities of inequalities embedded within such reproductive mobility. (...) Traveling or mobility is often a privileged decision and connotes freedom and cultural capital. Yet, when applied to young white egg providers from South Africa, this traveling biolabor relies on a particular kind of biopolitics wherein the reproductive potential of ova/egg is fundamental in facilitating women’s cross-border mobility. I divide the findings sections into three key themes—“cosmopolitan competency,” “alternatives to maternity,” and “productive pain”—to argue that, on the one hand, from recruitment of traveling egg providers to their management, this biolabor is built on the young women’s aspirations for cosmopolitanism. Traveling biolabor becomes a way to escape the normative expectations of their families and the national project of the volksmoeder. On the other hand, the pursuit of these aspirations is critically contingent on management successfully reframing the embodied pain of egg provision as well as the biolaborer’s own maternity. Laborers’ desires and management disciplining tactics converge to sustain the global fertility market. (shrink)

In the wake of Foucault, the debate on biopolitics has focused on the tensions of bíos and zoé, community and immunity, generation and thanatopolitics. What remains obscure in these accounts is the experiential aspect of life – its unfolding and entanglement with the ageing process. This is true both of approaches that emphasize the ethical implications of the life sciences and those that explore the biopolitical workings of wider social processes. In the contemporary capitalist formation, life’s unfolding is caught up (...) in global flows of information, finance and labour. The organization of the human faculties, the general preconditions for knowledge and communication, becomes central to value creation. And the human body, like fixed capital for Marx, becomes a cost to be amortized as quickly as possible. Investigating these processes with regard to transformations in practices of care provides a means for reassessing current debates regarding the ageing of people and populations. (shrink)

Over the last two decades, social scientists across disciplines have been researching how value is extracted and governed in the reproductive bioeconomy, which broadly refers to the various ways reproductive tissues, bodies, services, customers, workers, and data are inserted into capitalist modes of accumulation. While many of these studies are empirically grounded in single country–based analyses, this paper proposes an integrative political economy framework, structured around the concept of “global fertility chains.” The latter articulates the reproductive bioeconomy as a nexus (...) of intraconnected practices, operations, and transactions between enterprises, states, and households across the globe, through which reproductive services and commodities are produced, distributed, and consumed. Employing a diffractive reading of the literature on commodity chains and care chains, this unified approach scrutinizes the coproduction of value, biology, and technoscience and their governance mechanisms in the accumulation of capital by taking into account the unevenly developed geographies of global fertility chains, their reliance on women’s waged and unwaged reproductive labor, and the networked role of multiple actors at multiple scales without losing sight of the constitutive role of national states in creating demand, organizing supply, and accommodating the distribution of surplus value. We empirically ground this integrative political economy approach of the reproductive bioeconomy through collaborative, multisited fieldwork on transnational reproduction networks in Israel/palestine, Romania, Georgia, and Spain. (shrink)

This article presents qualitative research conducted in an Israeli ova `extraction' clinic in Romania. Following on from a piece written by Jyotsna Gupta and published in this journal in February 2006, this article asks what kinds of feminist alliances can or should be made in the arena of reproductive technologies. In conversation with Gupta, the author asks whether `an ethic of universal human dignity' is possible or desirable. This article looks to the voices of Romanian egg sellers themselves as a (...) source of theoretical and political direction for transnational feminists who try to think about responses to reproductive technologies. (shrink)

In 1959, Richard Feynman suggested that the most compelling reason to pursue nanoscale research might be ‘just for fun.’ This article traces a history of playful images and ludic practices in nanotechnology. Two case studies—nanocars and nanosoccer—exemplify the ways in which scientific research mobilizes speculative futures, less through engineering design or stepwise protocol than through the recreational dynamics of play. Although such molecular toys might appear frivolous, they index the increasingly widespread conditions of play labor, or ‘playbor’, shaping today’s technoculture. (...) Exploring the processes of transmutation and transvaluation by which technological imaginaries are rendered operative, this article tells a story of how the nanoworld became an everyday reality by becoming a game. (shrink)

It is increasingly suggested that shortages in the supply chain for human blood could be met by the development of techniques to manufacture human blood ex vivo. These techniques fall broadly under the umbrella of synthetic biology. We examine the biopolitical context surrounding the ex vivo culture of red blood cells through the linked concepts of alienation, immunity, bio-value and biosecuritization. We engage with diverse meanings of synthetic blood, and questions about how the discourses of biosecurity and privatization of risk (...) are linked to claims that the technology will address unmet needs and promote social justice. Through our discussion we contrast communitarian ideas that culturing red blood cells ‘extends the gift’ of adult blood donation with understandings of the immunitary logics that underpin the cord-blood economy. (shrink)

Gifts have served as a fundamental aspect of the human experience across time, even as their precise roles and functions have shifted. In the past, bioethicists and others have drawn upon anthropol...

Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. (...) Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place. (shrink)

(2013). Science-mart: privatizing American science. Journal of Economic Methodology: Vol. 20, Methodology, Systemic Risk, and the Economics Profession, pp. 75-81. doi: 10.1080/1350178X.2013.774858.

BackgroundThe increasing debate on financial incentives for organ donation raises concerns about a "commodification of the human body". Philosophical-ethical stances on this development depend on assumptions concerning the body and how people think about it. In our qualitative empirical study we analyze public attitudes towards organ donation in their specific relation to conceptions of the human body in four European countries (Cyprus, Germany, the Netherlands and Sweden). This approach aims at a more context-sensitive picture of what "commodification of the body" (...) can mean in concrete clinical decisions concerning organ donation.ResultsWe find that moral intuitions concerning organ donation are rooted in various conceptions of the human body and its relation to the self: a) the body as a mechanical object owned by the self, b) the body as a part of a higher order embodying the self, and c) the body as a hierarchy of organs constitutive of the self.ConclusionThe language of commodification is much too simple to capture what is at stake in everyday life intuitions about organ donation and organ sale. We discuss how the plurality of underlying body-self conceptions can be taken into account in the ethical debate, pointing out consequences for an anthropologically informed approach and for a liberal perspective. (shrink)

This article discusses the new reproductive technology of egg freezing in the context of existing literature on gender, medicalization, and infertility. What is unique about this technology is its use by women who are not currently infertile but who may anticipate a future diagnosis. This circumstance gives rise to a new ontological category of “anticipated infertility.” The author draws on participant observation and a qualitative analysis of scientific, mainstream, and marketing literature to identify and compare the representation of two different (...) candidates for egg freezing: women with cancer and healthy young women. Although both populations experience anticipated infertility, their dichotomous portrayals as appropriate candidates are demonstrative of gender norms linking women to motherhood. Egg freezing is a concise illustration of how the medicalization of women’s bodies and bodily processes masks a host of cultural anxieties about aging, illness, reproduction, and risk. (shrink)

A sociologist examines contemporary engagements of queer bodies and identities with fertility biomedicine. Drawing on social science, media culture, and the author’s own empirical research, three questions frame the analysis: 1. In what ways have queers on the gendered margins moved into the center and become implicated or central users of biomedicine’s fertility offerings? 2. In what ways is Fertility Inc. transformed by its own incorporation of various gendered and queered bodies and identities? And 3. What are the biosocial and (...) bioethical implications of expanded queer engagements and possibilities with Fertility Inc.? The author argues that “patient” activism through web 2.0 coupled with a largely unregulated free-market of assisted reproduction has included various queer identities as “parents-in-waiting.” Such inclusions raise a set of ethical tensions regarding how to be accountable to the many people implicated in this supply and demand industry. (shrink)

Contemporary medical imaging technologies produce images on the level of human cells. As a result of such images, egg and sperm cells have become well-known artefacts of popular culture. Medical imaging technology has transformed these gametes from invisible matter integrated in biological processes within the body to identifiable objects. The visualisation of egg and sperm cells has literally lifted the process of human reproduction out of the female body and made the gametes appear as protagonists in the story of human (...) reproduction. The article argues that visualisation of the gametes and the central role they play in contemporary imaginations of reproduction may offer vital contributions to the rather rapid acceptance and normalisation of assisted reproduction. (shrink)

The rise of genomic technologies has catalyzed shifts in the health care landscape through the commercialization of genome sequencing and testing services in the genomics marketplace. The development of consumer genomics into a growing array of information technologies aimed at collecting, curating, and broadly sharing personal data and biological materials reconstitutes the meaning of health and reframes patients into biocitizens. In this context, the good biocitizen is expected to assume personal responsibility for health through consumption of genomic information and acquiescence (...) to public and private efforts at data surveillance and aggregation. These shifts raise fundamental questions about how competing interests of the public, the state, and corporate entities will be reconciled and what trade‐offs are demanded for the promise of precision health. (shrink)

Breastmilk is bought, sold, and donated in a global marketplace, which risks exploiting the women who produce it. In Detroit, black mothers are targeted as paid milk donors; milk from Cambodian and Indian mothers is sold to parents in the United States and Australia; and the International Breast Milk Project sends donated milk from the United States to Africa. Drawing on transnational care work and affect theory, I argue that merely refraining from paying women does not eliminate potentially harmful effects. (...) Addressing the ethical implications of these exchanges requires reconsidering the relationship between gift and commodity and between love and work. (shrink)

Reproductive technologies produce new babies and new bioethical concerns. This article analyzes how Danish infertile couples negotiate traveling to Spain for egg donation. Fertility travel is situated in light of Danish bioethical discourses, while feminist cultural analysis is used to understand how Spanish clinical discourses choreograph egg donation to involve an intimate and affective exchange between two like-minded women. The Danish travelers employ love and desire to naturalize transnational egg donation as well as anger and disappointment to invoke notions of (...) reproductive rights. The article concludes that empirical research on fertility travel opens up for discussion bioethical perspectives, such as those involving fair trade and reciprocity. (shrink)

Medical practice has always involved at least three roles, three complimentary identities. Practitioners have been at once clinicians dedicated to a patient’s care, members of a professional organization promoting medicine, and informed citizens engaged in public debates on health issues. Beginning in the 1970s, a series of social and technological changes affected, and in many cases restricted, the practitioner’s ability to function equally in these three identities. While others have discussed the changing realities of medical practice in recent decades, none (...) have commented on their effect on their effect on rights of practitioners as citizens. Here several cases begin an analysis of the manner in which those changes have limited the physician’s right to act conscientiously and speak publicly in the face of organizational agendas and political priorities. (shrink)

For more than two decades, classes on “professionalism” have been the dominant platform for the non-technical socialization of medical students. It thus subsumes elements of previous foundation courses in bioethics and “medicine and society” in defining the appropriate relation between practitioners, patients, and society-at-large. Despite its importance, there is, however, no clear definition of what “professionalism” entails or the manner in which it serves various purported goals. This essay reviews, first, the historical role of the vocational practitioner in society, and (...) second, the introduction of “professionalism” as a newly constituted, core value in teaching. The structure of the paper is as an archaeology, a Foucauldian term for an investigation of seemingly separate but related antecedent contexts and ideas whose result is a perspective or point of view. The goal thus is an attempt to precisely locate “professionalism” within the greater history of medicine and its contemporary role in medical socialization. (shrink)

Personal genetic information services (PGI) or direct-to-consumer genomics (DTC) presents a convergence of web 2.0 platforms with consumer-oriented genetics that brings together issues of policy and design. The rise of networking over DNA profile and biodata (bionetworking) challenges the common design and HCI notions of interaction, social networking and user needs. It confronts design thinking and HCI with various biopolitical and biosocial issues discussed in STS studies. These interfaces intensify the troubled relationship between what is social and biological, collective and (...) individual, public and private, natural and political, material (embodied) and based on data or discourses. At the same time, this fast evolving convergence of biosciences with social networking transforms scientific practices in a way which demonstrates the importance of design in discussing issues of STS and policy. The notion of cosmopolitics as "collective experimentation" and "progressive composition of the common world" (Bruno Latour) offers a framework for understanding this connection between philosophy, policy and design. Bionetworking interfaces in this sense serve as probes for testing future collectives which transform the notions of human subjects, community and politics. (shrink)

In this article, I consider ‘skin portraiture’: a mode of representation that privileges quasi-anonymous, fragmented, magnified and anatomized images of skin. I argue that this mode of representation permits a heightened awareness of embodied experiences such as reflexivity, empathy and relationality. Expanding understandings of difference through its engagement with haptic imagery and visuality, skin portraiture reorients the boundaries between ‘I’/‘not I’ and subject/object – often through touch – and challenges the cultural commitment to traditional notions of bodily autonomy. By doing (...) so, skin portraiture functions as an antagonistic form of portraiture; that is, as a kind of anti-portraiture that pushes the genre into an expanded visual field and, at times, beyond representation. Exploring the skin-as-technology metaphor, I show that bio art skin portraiture creates chimeric skins through tissue culturing practices, permitting bodies to become radically relational. Bio art skin portraits celebrate the genetic and cellular differences between bodies through a visible collapse of epidermal boundaries, which engenders a hyper-haptic mode of seeing beyond the subject and her or his skin. Analysing the bio art of Jalia Essaïdi, ORLAN and Julia Reodica, and drawing on the work of Laura Marks and Erin Manning, this article explores the skin-as-technology metaphor in order to offer the arts and humanities an innovative understanding of contemporary embodiment. (shrink)

Throughout the COVID-19 pandemic, the concept of solidarity has been invoked frequently. Much interest has centred around how citizens and communities support one another during times of uncertainty. Yet, empirical research which accounts and understands citizen’s views on pandemic solidarity, or their actual practices has remained limited. Drawing upon the analysis of data from 35 qualitative interviews, this article investigates how residents in England and Scotland enacted, understood, or criticised (the lack of) solidarity during the first national lockdown in the (...) United Kingdom in April 2020—at a time when media celebrated solidarity as being at an all-time high. It finds that although solidarity was practiced by some people, the perceived lack of solidarity was just as pronounced. We conclude that despite frequent mobilisations of solidarity by policy makers and other public actors, actual practices of solidarity are poorly understood—despite the importance of solidarity for public health and policy. (shrink)

The issue of what is proper to nature, or life itself, is central to critical accounts of biomedicine and its complex interrelations with social, political and economic forces. These engagements, namely biopolitical accounts of medical practices and ethical-political critiques of biomedical discourse, grapple with the indistinction between the political and biological that biomedicine enacts. Making a significant contribution to both literatures, Ed Cohen’s A Body Worth Defending argues that the emergence of the concept of biological immunity signals the entry of (...) politics into life itself and, as such, constitutes a concrete example of biopolitics. This article examines Cohen’s account of how the political becomes biological, and the view of life it assumes. Seeking to open up the question of biology, it draws on the work of Georges Canguilhem, and New Materialist accounts of matter–meaning entanglement, to offer a reading of knowledge and life, or politics and biology, as ontologically entangled. (shrink)