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)

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients’ embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the (...) tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment. (shrink)

Based on observations and interviews collected during a yearlong ethnography of two anatomy laboratory courses at a large Midwestern university, this article argues that students learn anatomy through the formation of an observational-embodied look. All of the visual texts and material objects of the lab—from atlas illustrations, to photographs, to 3D models, to human bodies—are involved in this look that takes the form of anatomical demonstration and dissection. The student of anatomy, then, brings together observation, visual evidence, haptic experience, and (...) anatomical-medical knowledge to identity as anatomy those objects on display. Through an interrogation of and reflection on the bodies of the course, the participants must learn to recognize and appreciate the descriptive and relational values of anatomical evidence, and in the process develop the habitus of anatomists. Drawing from the work of Maurice Merleau-Ponty, Pierre Bourdieu, and Herbert Dreyfus, the author seeks to both uncover how students learn anatomy as well as articulate a theory of embodied learning. (shrink)

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 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)

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)

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)

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 proposes the term “safety logics” to understand attempts within the European Union to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to (...) explore the types of “safety” produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practitioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape. (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)

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)

Due to the shortage of organs, it has been proposed that the ban on organ sales is lifted and a market-based procurement system introduced. This paper assesses four prominent proposals for how such a market could be arranged: unregulated current market, regulated current market, payment-for-consent futures market, and the family-reward futures market. These are assessed in terms of how applicable prominent concerns with organ sales are for each model. The concerns evaluated are that organ markets will crowd out altruistic donation, (...) that consent to sell organs is invalid, that sellers will be harmed, and that commodification of organs will affect human relationships in a negative way. The paper concludes that the family-reward futures market fares best in this comparison but also that it provides the weakest incentive to potential buyers. There is an inverse relationship between how applicable prominent critiques are to organ market models and the increase in available organs they can be expected to provide. (shrink)

This paper considers Bram Stoker’s novel Dracula, published in 1897, as a window into techno-scientific and sociocultural developments of the fin-de-siècle era, ranging from blood transfusion and virology up to communication technology and brain research, but focusing on the birth of psychoanalysis in 1897, the year of publication. Stoker’s literary classic heralds a new style of scientific thinking, foreshadowing important aspects of post-1900 culture. Dracula reflects a number of scientific events which surfaced in the 1890s but evolved into major research (...) areas that are still relevant today. Rather than seeing science and literature as separate realms, moreover, Stoker’s masterpiece encourages us to address the ways in which techno-scientific and psycho- cultural developments mutually challenge and mirror one another, so that we may use his novel to deepen our understanding of emerging research practices and vice versa (Zwart 2008, 2010). Psychoanalysis plays a double role in this. It is the research field whose genealogical constellation is being studied, but at the same time (Lacanian) psychoanalysis guides my reading strategy. Dracula, the infectious, undead Vampire has become an archetypal cinematic icon and has attracted the attention of numerous scholars (Browning & Picart 2009). The vampire complex built on various folkloristic and literary sources and culminated in two famous nineteenth-century literary publications: the story The Vampyre by John Polidori (published in 1819)2 and Stoker’s version. Most of the more than 200 vampire movies released since Nosferatu (1922) are based on the latter (Skal 1990; Browning & Picart 2009; Melton 2010; Silver & Ursini 2010). Yet, rather than on the archetypal cinematic image of the Vampire, I will focus on the various scientific ideas and instruments employed by Dracula’s antagonists to overcome the threat to civilisation he represents. Although the basic storyline is well-known, I will begin with a plot summary. (shrink)

Research on human cadavers is an important mechanism of scientific progress and comprises a large industry in the United States. However, despite its importance and influence, there is little ethical or regulatory oversight of cadaver-based research. This lack of transparency raises important ethical questions. Thus, this paper serves as a call for ethicists and regulators to pay increased attention to cadaver research. I argue that cadaver research ought to be considered a subset of human subjects research and held accountable to (...) higher ethical standards. After describing current practices, I argue that oversight of cadaver research as a form of human subjects research is appropriate because cadaver research is similar to other types of human research, participants in cadaver research incur risks of harm, and a current lack of oversight has allowed the cadaver industry to entice research participation through ethically questionable practices. This paper urges greater dialogue among human subjects research ethicists and regulators about what constitutes appropriate protections for participants in cadaver research. (shrink)

Uncontainable Life: A Biophilosophy of Bioart investigates the ways in which thinking through the contemporary hybrid artistico-scientific practices of bioart is a biophilosophical practice, one that contributes to a more nuanced understanding of life than we encounter in mainstream academic discourse. When examined from a Deleuzian feminist perspective and in dialogue with contemporary bioscience, bioartistic projects reveal the inadequacy of asking about life’s essence. They expose the enmeshment between the living and non-living, organic and inorganic, and, ultimately, life and death. (...) Instead of examining the defining criteria of life, bioartistic practices explore and enact life as processual, differential, and always already uncontainable, thus transcending preconceived material and conceptual boundaries. In this way, this doctoral thesis concentrates on the ontology of life as it emerges through the selected bioartworks: “semi-living” sculptures created by The Tissue Culture and Art Project and the performance May the Horse Live in Me by L’Art Orienté Objet. The hope is that such an ontology can enable future conceptualisations of an ethico-politics that avoids the anthropocentric logic dominant in the humanities and social sciences. (shrink)

The technique of nuclear transplantation – popularly known as cloning – has been integrated into several different histories of twentieth century biology. Historians and science scholars have situated nuclear transplantation within narratives of scientific practice, biotechnology, bioethics, biomedicine, and changing views of life. However, nuclear transplantation has never been the focus of analysis. In this article, I examine the development of nuclear transplantation techniques, focusing on the people, motivations, and institutions associated with the first successful nuclear transfer in metazoans in (...) 1952. The conflict between embryologists and geneticists over the mechanisms of differentiation motivated Robert Briggs to pursue nuclear transplantation experiments as a way to resolve the debate. Briggs worked at the Lankenau Hospital Research Institute, a research facility devoted to the study of cancer. The goal of understanding cancer would play a role in the development of the technique, and the story of nuclear transplantation sheds light on the role that biomedical contexts play in biological research in the second half of the twentieth century. (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.

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)

_Phenomenological insights into health issues relating to bodily self-experience, normality and deviance, self-alienation, and objectification._.

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)

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)

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)

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)

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are (...) delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach—which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)—allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why. (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)

BackgroundThe bioethical debates concerning living donation and surrogacy revolve around similar ethical questions and moral concepts. Nevertheless, the ethical discourses in both fields grew largely isolated from each other.MethodsBased on a review of ethical, sociological and anthropological research this paper aims to link the ethical discourses on living kidney donation and surrogacy by providing a comparative analysis of the two practices’ relational dimension with regard to three aspects, i.e. the normative role of relational dynamics, social norms and gender roles, and (...) reciprocity. Based on this analysis, we derive conclusions for the framing of living organ donation and surrogacy in ethical theory and practice.ResultsFirst, our analysis emphasizes the relevance of acknowledging the complex relational implications of living kidney donation and surrogacy. Underestimating this relational dimension may not only lead to individual crises but endanger existing as well as newly emerging familial relationships. Second, we point out differences in the normative assessment of social norms and gender roles in the ethical debates about living kidney donation and surrogacy. In particular, we show how different evaluations of altruism affect the understanding of autonomy in both contexts. In addition, we sensitize for biased perceptions of gender roles. Finally, we argue that challenges resulting from unresolved reciprocity are an issue in living kidney donation and surrogacy independent of whether the exchange of body parts or bodily services is framed as a gift or commercial exchange. By pointing out the limits of financial compensation, we stress the relevance of non-material, relational rewards as potential remedy. (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)

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)

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)

The placenta’s role as a mediating passage between bodies has been a conceptual resource for feminist theorists and philosophers interested in developing more nuanced explanations of the maternal–fetal relation, a relation that has tended to be identified with maternal and fetal bodies rather than with the placenta between them. I draw on efforts by philosopher Luce Irigaray and her readers to theorise placental relations as a model for the negotiation of differences. In her more recent work, Irigaray figures the placenta (...) as an enveloping space of metaphorical enclosure. The placental relation in Irigaray’s work thus offers insights into the temporal structure of her theory of becoming and can inform a more ‘materialist’ account of pregnancy. I then consider how placental relations are conceptual resources for re-imagining relations of self–other in pregnancy, and for addressing emergent ethical concerns over the transformation of the placenta into a scientific object. (shrink)

The identification and valorization of unacknowledged, feminized forms of economic productivity has been an important task for feminist theory. In this article, we expand and rethink existing definitions of labour, in order to recognize the essential economic role women play in the stem cell and regenerative medicine industries, new fields of biomedical research that are rapidly expanding throughout the world. Women constitute the primary tissue donors in the new stem cell industries, which require high volumes of human embryos, oöcytes, foetal (...) tissue and umbilical cord blood. Such material is generally given for free in the advanced industrial democracies, constituted as a surplus (‘spare’ embryos) or waste (umbilical cord ‘afterbirth’, cadaveric foetuses, poor quality oöcytes) whose generative powers should not be withheld from others. At the same time, among impoverished female populations in developing nations, such biological material is now often procured through frankly transactional relations, where women undertake risky procedures for small fees. In each case, female bodily productivity is mobilized to support bioeconomic research, yet the economic value involved in these relations is largely unacknowledged. In this article, we consider both the gift economy and the transactional economy for reproductive tissues as a form of labour. In order to fully conceptualize the specificities of feminized productivity in the bioeconomy, we distinguish between earlier feminist theories of reproductive labour and the emerging practices generated by stem cell research, which we term regenerative labour. We consider how historical transformations in the regulation of feminized labour and the technical repertoires of stem cell research renegotiate the productivity limits of female reproductive biology, opening it out to novel and profitable forms of surplus value and enrolling women in complex negotiations over their role in bioeconomic activity. (shrink)

BackgroundThe bioethical debates concerning living donation and surrogacy revolve around similar ethical questions and moral concepts. Nevertheless, the ethical discourses in both fields grew largely isolated from each other.MethodsBased on a review of ethical, sociological and anthropological research this paper aims to link the ethical discourses on living kidney donation and surrogacy by providing a comparative analysis of the two practices’ relational dimension with regard to three aspects, i.e. the normative role of relational dynamics, social norms and gender roles, and (...) reciprocity. Based on this analysis, we derive conclusions for the framing of living organ donation and surrogacy in ethical theory and practice.ResultsFirst, our analysis emphasizes the relevance of acknowledging the complex relational implications of living kidney donation and surrogacy. Underestimating this relational dimension may not only lead to individual crises but endanger existing as well as newly emerging familial relationships. Second, we point out differences in the normative assessment of social norms and gender roles in the ethical debates about living kidney donation and surrogacy. In particular, we show how different evaluations of altruism affect the understanding of autonomy in both contexts. In addition, we sensitize for biased perceptions of gender roles. Finally, we argue that challenges resulting from unresolved reciprocity are an issue in living kidney donation and surrogacy independent of whether the exchange of body parts or bodily services is framed as a gift or commercial exchange. By pointing out the limits of financial compensation, we stress the relevance of non-material, relational rewards as potential remedy. (shrink)

Ten years after the publication of the special issue of Social Epistemology on feminist epistemology, this paper explores recent feminist interest in the inhuman. Feminist science studies, cultural studies, philosophy and environmental studies all build on the important work feminist epistemology has done to bring to the fore questions of feminist empiricism, situated knowledges and knowing as an intersubjective activity. Current research in feminist theory is expanding this epistemological horizon to consider the possibility of an inhuman epistemology. This paper explores (...) these developments through the subject of waste. Waste, as both an epistemological and material phenomenon, invites timely questions about possibilities for acknowledging an inhuman epistemology. These questions appear to be particularly urgent from an environmental perspective. (shrink)

“Democratization” has recently become a popular trope in Western public discourses on medicine, where it refers to patient participation in the gathering and distribution of health-related data using various digital technologies, in order to improve healthcare technically and socially. We critically analyze the usage of the term from the perspective of the “politics of buzzwords.” Our claim is that the phrase works primarily to publicly justify the dramatic increase in the application of information and data technologies in healthcare and therefore (...) fosters the corresponding industry. As a buzzword, “democratizing healthcare” is characterized by vagueness, which is why it receives meaning only through a word collective—a group of words that provide it with a context and are often used together with it. We examine key terms associated with “democratization” in the healthcare discourse—participation, empowerment, and personalized medicine—and show that the buzzword receives rhetorical power through the ambiguous reference to these concepts. As a consequence, the idea of “democracy” becomes diluted into meaning merely “access to,” and “healthcare” is reduced to the notion of a preventive, nonacute, monitored form of medical care. (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)

According to biomedical discourse, cord blood has been transformed from ‘waste’ to ‘clinical gold’ because of its potential for use in treatments. Private cord blood banks deploy clinical discourse to market their services to prospective parents, encouraging them to pay to bank cord blood as a form of ‘biological insurance’ to ensure their child’s future health. Social scientists have examined new forms of (bio)value produced in biological materials emergent with contemporary biotechnologies. This paper contributes to this literature by examining the (...) social and technical production of value in cord blood units collected for private banking. Value, in this paper is defined as a socio-cultural concept in which an object is made meaningful, or valuable, through its relations with social actors and within specific regimes of value. I draw on in-depth interviews with women who banked cord blood and key informants in private banks in Canada, to analyze how social actors produced cord blood as a valuable biological object. I show that a cord blood unit holds promissory value for women who bank and profit value for private banks and that these values are folded into each other and the biological material itself. Analyzing how specific cord blood units are made valuable provides insight into the multiple and possibly competing values of biological materials and the tensions that may arise between social actors and forms of knowledge during the valuing process. (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)

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)

Critical analysis of the biotechnological reproduction of biological life increasingly emphasises the role of value-producing labour in biotechnologically reproductive processes, while also arguing that Marx’s use of the terms ‘labour’ and ‘value’ is inadequate to the critical scrutiny of these processes. Focusing especially on the reformulation of the value-labour relation in recent work in this area by Melinda Cooper and Catherine Waldby, this paper both critiques this reformulation and questions the explanatory efficacy of the category ‘labour’ in this context. Emphasising (...) the contemporary global expansion of capital relative to value-producing labour – specifically, the expansion of fictitious capital and debt on the one hand, and of global surplus populations on the other – it argues that this reformulation misrepresents the mediated capacities of capital as the immediate capacities of labour. This reformulation, moreover, is indicative of broader tendencies in the contemporary theorisation of labour, tendencies exemplified by autonomist Marxism. (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)

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)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (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)

The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...) and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a ‘donation’ or ‘gift’, and tissue providers are referred to as ‘donors’. Because of the performative qualities of language, the effect of using ‘donation’ and ‘donor’ shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology. (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)