Once upon a time scholars assumed that the knowing subject in the disciplines is transparent, disincorporated from the known and untouched by the geo-political configuration of the world in which people are racially ranked and regions are racially configured. From a detached and neutral point of observation (that Colombian philosopher Santiago Castro-Gómez describes as the hubris of the zero point ), the knowing subject maps the world and its problems, classifies people and projects into what is good for them. Today (...) that assumption is no longer tenable, although there are still many believers. At stake is indeed the question of racism and epistemology. And once upon a time scholars assumed that if you ‘come’ from Latin America you have to ‘talk about’ Latin America; that in such a case you have to be a token of your culture. Such expectation will not arise if the author ‘comes’ from Germany, France, England or the US. As we know: the first world has knowledge, the third world has culture; Native Americans have wisdom, Anglo Americans have science. The need for political and epistemic de-linking here comes to the fore, as well as decolonializing and decolonial knowledges, necessary steps for imagining and building democratic, just, and nonimperial/colonial societies. (shrink)

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

This article compares three models for conceptualizing the political and ethical challenges of contemporary genetics, genomics, and postgenomics. The three analytical approaches are referred to as the state-politics model, the biopolitical model, and the infopolitical model. Each of these models is valuable for different purposes. But comparing these models in terms of their influence in contemporary discussions, the first is by far the dominant approach, the second is gaining in importance, and the third is almost entirely neglected. The widespread neglect (...) of the infopolitical dimensions of genetic sciences focused by the third model is puzzling in light of the fact that genetics, genomics, and postgenomics are all pre-eminent information sciences. The infopolitical model thus aims to bring into clearer view the specific political and ethical problems engendered by this informational nature of the genetic sciences. This model offers a way of understanding how ethically-salient and politically-fraught conceptual assumptions can be embedded in informational architectures such as algorithms and the formats (or data structures) upon which they rely. (shrink)

We bring together recent discussions on data capitalism and biocapitalization by studying value flows in consumer genomics firms—an industry at the intersection between health care and technology realms. Consumer genomics companies market genomic testing services to consumers as a source of fun, altruism, belonging and knowledge. But by maintaining a multisided or platform business model, these firms also engage in digital capitalism, creating financial profit from data brokerage. This is a precarious balance to strike: If these companies’ business models consist (...) of assetizing the pool of genomic data that they assemble, then part of their work has to revolve around obscuring to consumers any uncertainties that would potentially impinge on these processes of assemblage. We reflect on the nature of these practices and the market relationships that enable them, and we relate this reflection to debates around alternative market arrangements that would potentially mitigate the extractive tendencies of these and other digital health firms. (shrink)

This article explores Foucault’s two different notions of power: one where the subject is constituted by power–knowledge relations and another that emphasizes how power is a central feature of human action. By drawing out these two conceptualizations of power, Foucault’s work contributes three critical points to the formation of medicalized subjectivities: the issue of medicalization needs to be discussed both in terms of both specific practices and holistically ; we need to think how we as human beings are “disciplined” and (...) “subjectivated” through medicalization, as discourses, practices, and institutions are all crystallizations of power relations; and we need to reflect on how we can “resist” this process of subjectification, since “power comes from below” and patients shape themselves through “technologies of the self.” Ultimately, Foucault’s work does not merely assist us in refining our analysis; rather, it is essential for conceptualizing medicalization in contemporary society. (shrink)

Social theory is developing in response to the coronavirus (COVID) crisis. Fundamental questions about social justice in the relationship of individuals to society are raised by Delanty in his review of political philosophy, including Agamben, Foucault and Žižek. However, the focus on the libertarian critique of authoritarianism is not enough. The social democratic critique of neoliberalism lies at the centre of the contesting responses to the COVID crisis. A social democratic perspective on public health, democracy and state action is contrasted (...) with the anti-statists of left and right. This is addressed in debates on the relationship between science and governance, the place of crisis in theories of change and the conceptualisation of alternative forms of social formation. The crisis initiated by the pandemic, cascading through society, from health to economy, to polity and into violence, includes a contestation between social democratic and neoliberal visions of alternative forms of society. (shrink)

As befits an emerging field of enquiry, there is on-going discussion about the scope, role and future of the medical humanities. One relatively recent contribution to this debate proposes a differentiation of the field into two distinct terrains, ‘medical humanities’ and ‘health humanities,’ and calls for a supersession of the former by the latter. In this paper, we revisit the conceptual underpinnings for a distinction between ‘the medical’ and ‘health’ by looking at the history of an analogous debate between ‘medical (...) geography’ and ‘the geographies of health’ that has, over the last few years, witnessed a re-blurring of the distinction. Highlighting the value of this debate within the social sciences for the future development of the medical humanities, we call for scholars to take seriously the challenges of critical and cultural theory, community-based arts and health, and the counter-cultural creative practices and strategies of activist movements in order to meet the new research challenges and fulfill the radical potential of a critical medical humanities. (shrink)

This paper explores the distinctive features of the critical agenda associated with the ‘Social Life of Methods’. I argue that although this perspective can be associated with the increasing interest, often associated with scholars in Science and Technology Studies, to reflect on how methods can become objects of inquiry, it also needs to be rooted in the current crisis of positivist methods. I identify the challenge for positivism in terms of the decreasing ability of its procedures to effectively organize increasingly (...) ‘lively’ sources of standardized data, which can now be assembled using aesthetic registers. In developing this argument, I dispute the idea that this development is due to historical shifts linked to the way that methodological devices are playing an increasingly significant role in contemporary social life, which might be argued by writers such as Thrift or Castells. I also argue that by opening up issues of method to the aesthetic, we also recast the relationship between theory and method, pointing to the exhaustion of a certain kind of cultural theory within the social sciences. I contextualize these issues by considering how methods are implicated in the intellectual differentiation between scientific and humanities expertise. Rather than conceiving the ‘Social Life of Methods’ in terms of the rise of instrumentalist modes of governance, it is preferable to place it within the dialectic of transparency and the relationship between the implicit and explicit. These issues are addressed through introducing the papers in the special issue. (shrink)

What new forms of ethical engagement are emerging in naturecultural worlds? In this paper I explore the example of the practical ethics of the permaculture movement. I put these in dialogue first with new approaches to ethics in biopolitics and naturecultures and second with a reading of feminist care ethics. Across this discussion I focus on the potential of ethos transformations experienced through everyday doings to promote ethical obligations of care. If we are living in a naturecultural world where politics (...) and ethics conflate in biopolitics, the permaculture movement is an example of an alter-biopolitical intervention. It works within bios with an ethics of collective empowerment that puts caring at the heart of its search of alternatives for hopeful flourishing for all beings. (shrink)

This paper explores a novel philosophy of ethical care in the face of burgeoning biomedical technologies. I respond to a serious challenge facing traditional bioethics with its roots in analytic philosophy. The hallmarks of these traditional approaches are reason and autonomy, founded on a belief in the liberal humanist subject. In recent years, however, there have been mounting challenges to this view of human subjectivity, emerging from poststructuralist critiques, such as Michel Foucault's, but increasingly also as a result of advances (...) in biotechnology itself. In the face of these developments, I argue that the theoretical relevance and practical application of mainstream bioethics is increasingly under strain. Traditionalists will undoubtedly resist. Together, professional philosopher-bioethicists, public health policymakers, and the global commercial healthcare industry tend to respond conservatively by shoring up the liberal humanist subject as the foundation for medical ethics and consumer decision-making, appealing to the familiar tropes of reason, autonomy, and freedom. (shrink)

It is useful on the occasion of the 21st anniversary of the ‘Cyborg Manifesto’ not only to reconsider its lessons in the context of what is frequently described as the re-engineering of ‘life itself’, but to look at Haraway’s earlier work on embryos. In this article I begin with Haraway’s analysis of embryology in the 1970s to suggest her cyborg embryo was already there, and has, if anything, gained relevance in today’s embryo-strewn society. I argue further, as the title suggests, (...) that the cyborg embryo has been crucial in defining our path to what I am calling here, building on Haraway’s notion of trans from Modest_Witness, ‘transbiology’ - broadly meaning stem cell research, cloning, tissue engineering and regenerative medicine. To illustrate this argument I draw on recent ethnographic fieldwork in a new stem cell derivation facility in the UK built adjacent to an IVF surgery. Using this example, I explore the important and paradoxical role of IVF in the emergence of stem cell science, cloning and transbiology, suggesting that Haraway’s analysis remains crucial to understanding the ironic and contradictory, and unexpectedly generative, circumstances through which the IVF-stem cell interface - the door to transbiology - came into being. (shrink)

Foucault’s argument that a major break occurred in the nature of power in the European Eighteenth century—an unprecedented socialization of medicine and concern for the health of bodies and populations, the birth of biopolitics—has become since the 1990s a dominant narrative among sociologists but is rarely if ever scrutinized in its premises. This article problematizes Foucault’s periodization about the politics of health and the way its story has been solidified into an uncritical account. Building on novel historiographic work, it challenges (...) the modernist bias of histories of biopolitics and public health and considers an earlier and more plural history of collective practices of health of which the story told by Foucault is just one important episode. Finally, it discusses the implications of this revised model for wider sociological debates on the link between modernity, health and the body. (shrink)

It is argued that the social significance of nanotechnologies should be understood in terms of the politics and ethics of uncertainty. This means that the uncertainties surrounding the present and future development of nanotechnologies should not be interpreted, first and foremost, in terms of concepts of risk. It is argued that risk, as a way of managing uncertain futures, has a particular historical genealogy, and as such implies a specific politics and ethics. It is proposed, instead, that the concepts of (...) contingency and of finitude must be central to any understanding of the ethical significance of nanotechnologies, as these concepts can be used to understand the basis of recent work in science and technology studies, and the sociology of knowledge more widely, which details the multi-dimensional social nature of technological uncertainty. (shrink)

In the mid-1970s, the biomedical model of medicine gave way to the biopsychosocial model of medicine; it was billed as a more comprehensive and compassionate model of medicine. After more than a century of disentangling medicine from religion, the medicine and spirituality movement is attempting to bring religion and spirituality back into medicine. It is doing so under a biopsychosociospiritual model. I unpack one model for allowing religion back into medicine called the RCOPE. RCOPE is an instrument designed to categorize (...) religion and spirituality as psychological coping mechanisms. I explore how such instruments are related to the history of statistical measurement and demonstrate the political impetus that governs such enterprises. The biopsychosociospiritual medicine is billed as a more holistic and comprehensive model. This new model of medicine offers total care. However, I demonstrate how this total care becomes totalizing, indeed totalitarian, admitting religion and spirituality back into the fold of medicine under a new secularized medical control. (shrink)

The making and taking of psychotropic drugs, whether on medical prescription or as self-medication, whether marketed by pharmaceutical companies or clamoured for by an anxious population, has been an integral part of the twentieth century. In this modern era of speed, uncertainty, pleasure and anguish the boundaries between healing and enhancing the mind by chemical means have been redefined. Long before Prozac would become a household name for an ‘emotional aspirin’ did consumers embrace the idea and practice of taking psychotropics (...) not only to treat mental illness but also to make them feel better about living in a modern world. The Freudian promise that each individual can remake him- or herself in the pursuit of health and happiness was helpful in promoting and legitimizing the idea and practice of seeking wellness on prescription. We will argue that the modern consumer-driven political culture of medicine will continue to transverse the boundaries of therapy and enhancement of the mind into the largely unexplored territories of human cognition and behaviour. However exciting, this endeavour will come at the cost of further widening the problem of iatrogenic addiction in the age of happiness pills as ‘botox’ for the mind. (shrink)

Medical and non-medical experts increasingly argue that individuals, whether they are diagnosed with a specific chronic disease or condition or not (and whether they are judged at minimal risk of these consequences or not), have an obligation to make ‘healthy’ food choices. We argue that this obligation is neither scientifically nor ethically justified at the level of the individual. Our intent in the article is not simply to argue against moralization of the value of prudential uses of food for nutritional (...) health, but to situate nutritional advocacy in the context of Western liberal democracy that values free choice. We have two objectives: (i) to untangle and examine the substance of discourses on ‘healthy’ food choice that simplify nutrition science and place a moral obligation on individuals and (ii) to establish a more comprehensive view of the relationship among food, ethics and health. Although critical of certain features of the liberal political and moral tradition, we argue that John Stuart Mill’s notion of experiments in living provides fertile ground for an improved ethical understanding of individual obligation and of the interconnections among food, health and well-being. (shrink)

This article addresses the relations between ‘nature’ and ‘culture’ (and those characteristics associated with ‘the natural’ and ‘the cultural’) in the context of the debates about Prozac. Following Marilyn Strathern, I focus specifically on the contested issue of enablement - that is, on what Prozac does or does not enable, and on the relation between enablement and enhancement, normality and pathology. I argue that the implications of the model of the brain that accompanies explanations of Prozac are such that commentators (...) are obliged to address not only the nature of normality but also the nature of nature itself. Through a close analysis of these debates, I suggest that critiques of Prozac should be understood not as objections to reductionism - to a biology that closes things down - but rather to one that opens things up: that opens up the relations between nature, culture, biology and the individual, relations that are now cross-cut and thrown about by artificiality. Objections to Prozac, then, might be characterized as an attempt to put these concepts back into their ‘proper’ positions, to re-establish the relationality between them. In conclusion, I argue that the biology put forward by proponents of psychopharmacology, regardless of the desirability of the latter, challenges not only the frequent assumptions that are made about the claims of materialist science, but also some of the terms and concepts that are commonly deployed in the social sciences. (shrink)

In this paper we explore the rise of ‘the breast cancer gene’ as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe instability in the individuals (...) and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of ‘being in good health’ has hardly been reinforced by the emergence of gene technology. (shrink)

The emergence of a new tissue economy raises issues for the governance of risk and concepts of the body and self. This article explores the development of autologous cell therapies as a form of tissue engineering and considers how and why autologous applications are seen as less risky and more socially and politically acceptable. In a careful analysis of contemporary debates around the need for new international policies to regulate these technologies, we critically assess the discursive strategies employed to support (...) ideas of the body as a natural entity. Central to these debates are assumptions that autologous applications do not threaten the moral or corporeal integrity of the individual and that they are ‘an ethics-free zone’. Analysis reveals that concepts such as intercorporeality need to be refined if they are to assist our understanding of these cell-based therapies. We consider the biopolitics of Autologous Chondrocyte Implantation (ACI) in order to show the linkages between the culturing of cells, regulation and the reproduction of the self. (shrink)

In this article, we argue that contemporary biomedicine is shaped by two, seemingly incommensurable, organizational logics, the ‘regime of truth’ and the ‘regime of hope’. We articulate their features by drawing on debates sparked by the recent clinical trial of a new approach to the treatment of Parkinson’s Disease. We also argue that the ‘self’ is configured in the very same process whereby these two organizational logics interlock and become mutually dependent, so that the ‘self’ might be said to be (...) the effect of a ‘parasitic’ relationship between the regimes of ‘truth’ and ‘hope’. We then bring these two arguments to bear on the contrasting views of the relationship between embodiment and political subjectivity articulated by Michel Foucault and Giorgio Agamben, on the one hand, and Paul Rabinow and Nikolas Rose, on the other hand. (shrink)

This article explores the relationship between medicine’s history and its digital present through the lens of the physician-patient relationship. Today the rhetoric surrounding the introduction of new technologies into medicine tends to emphasize that technologies are disturbing relationships, and that the doctor-patient bond reflects a more ‘human’ era of medicine that should be preserved. Using historical studies of pre-modern and modern Western European medicine, this article shows that patient-physician relationships have always been shaped by material cultures. We discuss three activities (...) – recording, examining, and treating – in the light of their historical antecedents, and suggest that the notion of ‘human medicine’ is ever-changing: it consists of social attributions of skills to physicians that played out very differently over the course of history. (shrink)

In this paper, we explore how the definition of life takes on an essential character in the ethical debates around health technologies, with life thus being manufactured in the tensions and conflicts around the use of such artefacts and devices. We introduce concepts from science and technology studies (STS) to approach bioethics, overcoming the dualistic conception that separates the natural and the technological and questioning the dominant rationality that divides life into dualities. Drawing on two research projects in which we (...) have been involved in recent years, one regarding biobanks and the other regarding social care robots, we explore how the ethical discussions about biobanks and robots imply particular notions of life. We argue that the contemporary epistemic category of life is a manufactured life in which various rationalities coexist: one rationality based on a separation between the technological and the human, focused on pragmatism and functionalities that tend towards a dualized notion of life divided into qualified and non-qualified life, and another rationality based on a non-essentialist ontology, focused on the mediating role of health technologies, that entails a distributed life appearing as a precarious effect of a network. Each of these rationalities allows the emergence of different issues and ethical concerns, thus enriching the bioethical debate. (shrink)

Many scholars have historicized biopolitics with reference to the emergence of sovereign nations and their colonial extensions over the 18th, 19th and 20th centuries. This article begins to conceptualize and trace the history of biopolitics beyond the nation, arguing that the history of world health - the great 20th-century reach of 19th-century health and hygiene - should be understood as a vital politics of population on a newly large field of play. This substantive history of world health and world population (...) is analysed as sites for thinking about global bio-politics; and the article looks seriously at the interwar period as a point at which ‘the world’ (or Hardt and Negri’s ‘Empire’) was already challenging the idea of ‘inter/national’. (shrink)

Angelaki, Volume 17, Issue 2, Page 169-176, June 2012.

While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of “victim-blaming” approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the (...) ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted. (shrink)

This paper examines processes of translation through which molecular genetic technologies and practices are incorporated into environmental health research and regulation. Specifically, it considers how scientists, risk assessors, and regulators have used genetically modified mouse models to translate across scientific disciplines, articulate emergent molecular forms, standards, and practices with the extant? gold standard,? and establish roles for molecular knowledge in risk assessment and regulation. Noting variation both within and between regulatory agencies in responses to data from these models, the article (...) describes also the role of public-private networks and their effects on professional and institutional imperatives which shape regulators? responses to the potential applications of these models. The conclusions address the importance of translation for understanding the wider implications of the molecularization of environmental health science. (shrink)

Based upon flyers and advertisements for the contraceptive pill from 1961 until 2005, this paper discusses the ways in which the drug and its female users were represented in the marketing of two West European countries, France and the German Federal Republic. As my analysis suggests, national differences are only discernible in the marketing until the end of the 1970s. In West Germany, the pill was depicted from early on as a contraceptive, whereas, due to the restrictive legal situation, in (...) France the pill was marketed as a multi-purpose drug. Nevertheless, the sources in both countries emphasized the safety of the drug. Likewise the representations of women changed from the notion of the married mother to a more diverse image, including young, modern and active women. From the early 1980s on, French and German materials conformed to one another. Now more classification systems were developed, emphasizing the differences between types of pills and types of women. Lifestyle, leisure and fun became increasingly central topics. Correspondingly, the female user was often portrayed in a sexualized way and represented as an active consumer with individual needs and wishes. (shrink)

Contributing to both ageing research and queer-feminist scholarship, this article introduces feminist philosopher Margrit Shildrick’s queer notion of the monstrous to the subject of ageing and the issue of dealing with frailty within ageing research. The monstrous, as a norm-critical notion, takes as its point of departure that we are always already monstrous, meaning that the western ideal of well-ordered, independent, unleaky, rational embodied subjects is impossible to achieve. From this starting point the normalizing and optimizing strategies of ageing research (...) – here exemplified through the concept of successful ageing and the treatment of Alzheimer’s disease – can be problematized. The notion of the monstrous instead suggests a view on ageing and ‘monstrous’ embodiment which provides room for other, different ways of being recognized as an embodied subject, and for dealing with difference, vulnerability and frailty. (shrink)

In this essay we take stock of the shortcomings, successes, and promises of ‘biopolitics' to understand and frame global health crises such as COVID-19. We claim that rather than thinking in terms of a special relationship between Western modernity and biopolitics, it is better to look at a longer and more global histories of populations’ politics of life and health to situate present and future responses to ecological crises. Normatively, we argue for an affirmative biopolitics, that at once de-securitizes our (...) approach to our biosocial condition and expands the politics of the human estate to other molar and molecular dimensions. (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)

This article raises the question of ‘normality’ today and the fracturing of health ideals along new lines of enablement and function. In particular the study asks if ‘functional’ and ‘dysfunctional’ are displacing ‘normal’ and ‘pathological’ as master biopolitical binarisms, and if so, what distinctions can be drawn between them. The discourse of ‘function’ and ‘dysfunction’ is certainly ubiquitous in two areas of research and practice: gerontology and sexology. In the former case ‘functional health’ is linked to successful aging represented by (...) technical tests around activities of daily living (ADLs) and risk-assessment profiles. In the latter case, sexual function and dysfunction have become all-encompassing markers of heterosexual competence, now largely detached from reproductive imperatives, but refashioned as integral to responsible and successful self-management. Presenting examples from both cases, the article concludes that functionality, circulating under the signs of ‘normal’, ‘natural’ and ‘healthy’, furnishes economic, technological, educational, professional, pharmacological and policy fields with a rich intellectual, practical and regulatory resource. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or (...) privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)

This is part 1 of 6 of the dossier What Do We Talk about when We Talk about Queer Death?, edited by M. Petricola. The contributions collected in this article sit at the crossroads between thanatology and queer theory and tackle questions such as: how can we define queer death studies as a research field? How can queer death studies problematize and rethink the life-death binary? Which notions and hermeneutic tools could be borrowed from other disciplines in order to better (...) define queer death studies? The present article includes the following contributions: – MacCormack P., What does queer death studies mean?; – Radomska M., On queering death studies; – Lykke N., Death as vibrancy; – Hillerup Hansen I., What concreteness will do to resolve the uncertain; – Olson P., Queer objectivity as a response to denials of death; – Manganas N., The queer lack of a chthonic instinct. (shrink)

Using the metaphors body and voice and drawing on critical contributions on biopolitics, this article interrogates children’s participation rights in a knowledge culture of ‘evidencing’. With child welfare and protection practice as an empirical example, I analyse written assessment reports from a Swedish child welfare agency, all exemplifying how social workers evidence needs for protection and reasons for removing children from the home. I discuss how ‘evidencing’ equals a knowledge culture of seeing-believing and predicting-believing and the search for visibly damaged (...) bodies and underdeveloped minds. I furthermore problematise how such conceptualisation of evidencing foregrounds children’s ‘speaking’ bodies while silencing their voices. By showing these manifestations of evidencing, this critical contribution discusses some wider epistemic concerns for fields influenced by the knowledge cultures of ‘the evidence-based’. (shrink)

The Linda paradox is a key topic in current debates on the rationality of human reasoning and its limitations. We present a novel analysis of this paradox, based on the notion of verisimilitude as studied in the philosophy of science. The comparison with an alternative analysis based on probabilistic confirmation suggests how to overcome some problems of our account by introducing an adequately defined notion of verisimilitudinarian confirmation.

This special issue of Science, Technology, & Human Values critically explores a new stage in which the life sciences and biomedical practices have entered. This new stage is marked by postgenomic developments and an increased interest of life sciences in the everyday lives of people outside laboratories and clinical settings. Furthermore, particular attention is given to many chronic and degenerative disorders such as cardiovascular disease, Alzheimer’s disease, or developmental disorders. These developments coincide—or have become entangled—with a new set of interests (...) that an anthropologically inclined science and technology studies is bringing to the analyses of biomedical practices. An increased interest is observed in the anthropologically inclined STS in studying phenomena on different scales and in exploring fields that are not readily dominated by technoscientific rationality in practice. The introduction to the special issue examines briefly these developments and situates them in a broader genealogy of different movements that have taken place in the anthropologically inclined subfield of STS since the late 1970s and early 1980s. (shrink)

The concept of responsibilization that originally emerged out of the context of the so-called Governmentality Studies is now widely used in various social sciences to describe a governing technology particularly attuned to the challenge of neoliberalism, i.e. how to govern free individuals. However, in seemingly paradoxical simultaneity with the hegemeony of neoliberalism that relies heavily on individual choice, freedom and responsibility, two powerful scientific discourses exist that appear to undermine these assumptions vehemently, namely genetics and neuroscience. Starting from a discussion (...) of the strengths and limits of the notion of responsibilization, the article argues for the need to introduce the complementary concept of irresponsibilization that can be interpreted as a form of what Foucault in his lectures on the History of Governmentality refers to as ‘counter-conduct’ – in this case, against the neoliberal governing technology of responsibilization. The article proceeds to explore to what extent genetics and neuroscience can be considered discourses fuelling forms of genetic and/or neuro-irresponsibilization, which would make sense of the seemingly paradoxical co-hegemony of neoliberalism, on the one hand, and genetics and neuro-science, on the other. However, the article ultimately argues that, upon closer inspection of the findings in these disciplines and how they are used, it turns out that constituting oneself as a ‘somatic individual’ as a form of counter-conduct comes at a considerable cost, notably new forms of genetic and/or neuro-responsibility. Thus, the article closes with the twofold conclusion that wherever there is responsibilization, there is also irresponsibilization and that genetic and neuro-irresponsibilization are risky strategies of counter-conduct that might bring in responsibilization on a different level through the back door again. (shrink)

An intellectual and cultural movement advocating a radical enhancement of human performance via technoscientific and biomedical advances, transhumanism has grown in notoriety in recent years. Grouping engineers, philosophers, sociologists, and entrepreneurs, the movement and its ideals of enhanced humans have a strong social resonance, be it doping in sport, the use of smart drugs, or the biomedical battle against aging. This article sheds theoretical and critical light on transhumanism through the lens of human perfectibility. It particularly aims to show how (...) the movement marks a significant reversal of the humanist conception of human perfectibility inherited from the Enlightenment. Far from working for the social and political emancipation of humans and the human condition, transhumanism is emblematic of a depoliticized conception of human perfectibility focused on the technoscientific adaptation of the human being. Transhumanism thus marks a major rupture with the modern democratic project of autonomy. (shrink)

Kniha Grégoira Chamayou, Les corps vils: Expérimenter sur les êtres humains aux 18e et 19e siècles vykresluje výzkumné praktiky v lékařství v 18. a 19. století a na pozadí příběhů zacházení s těly trestanců, galejníků nebo prostitutek abstrahuje kategorii „nešlechetného těla": tedy těla, vnímaného danými společenskými poměry jako nehodnotného. Autor knihy představuje pomocí této kategorie postulát kritické analýzy výzkumných praktik, jejichž povaha jde ruku v ruce s vývojem historicko-společenských konvencí. Tato recenzní stať představuje vývoj debaty v aktuálních pracích anglofonní STS, (...) lékařské sociologie a sociologie vědeckého poznání. Reflexi zužuje na subjekty a produkty lékařského výzkumu, pomocí nichž vykresluje koncept „argumentační koprodukce". Argumentační koprodukce upozorňuje na provázanost vědy a společnosti a zároveň zesíleně vnímá vnitřní dynamiku tohoto vztahu. (shrink)

A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable (...) citizenry. In this essay, I outline the logic of inclusive and eugenic world building, define and explain the role of the "normate" in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations. (shrink)

The human microbiome is changing the way experts and non-experts think about germs and microorganisms. This essay is a gender analysis of contemporary discourses surrounding the human reproductive microbiome, specifically the vaginal microbiota and the penile microbiota. I first historically situate the human reproductive microbiome within the germ theory of disease. Then, I draw on Heather Paxson’s Foucauldian and Latourian concept of microbiopolitics to argue that microbiopolitics is not only about how humans should live with microorganisms; but it also impacts (...) how humans and microbes live together as gendered beings. I illustrate this gendering through two figures: the microbial mother and the independent organ. (shrink)

The multidisciplinary provenance of bioethics leads to a variety of discursive styles and ways of reasoning, making the discipline vulnerable to criticism and unwieldy to the setting of solid theoretical foundations. Applied ethics belongs to a group of disciplines that resort to deliberation rather than formal argumentation, therefore employing both factual and value propositions, as well as emotions, intuitions and other non logical elements. Deliberation is thus enriched to the point where ethical discourse becomes substantial rather than purely analytical. Caution (...) must be exercised to avoid this formal permissiveness from accepting empty and incorrigible statements that are but flatus voci since they can neither be supported nor falsified. It is therefore suggested that deliberation in bioethics should comply with three sets of conditions: (1) Be understandable, truthful, honest and pertinent, as suggested by communicative ethics; (2) Allow for second order, thick judgements as suggested by pragmatism; (3) Abide by additional criteria as here proposed: Doxastic propositions should be bolstered by a cognitive element; statements should be specific and proportional to the issue at hand, and they should be arguable and coherent. (shrink)

This is an ethnographic exploration into the meanings of contaminated blood. Intense commercial harvesting of human plasma, a blood component, in rural central China during the 1990s resulted in extensive HIV infection among donors. The lack of viral diversity among these infected donors, as revealed by research in molecular epidemiology, confirms that this epidemic took hold and spread rapidly with deadly efficiency through unsanitary plasmapheresis. The distinction in viral strains between this epidemic and the spread of HIV via other routes (...) of transmission in other parts of China serves also to promote claims to victimhood by infected rural commercial donors in the ambiguous geography of moral ambivalence towards carriers of the virus. Through a series of vignettes from field research among rural plasma donors in China, this article examines the tensions between solidarity and distinction, victimhood and responsibility, alliance and strife as they play out in meanings derived from contaminated blood, within their everyday experience and also within their participation in the broader HIV/aids activism, in which their distinction is inevitably challenged. (shrink)

This article analyses research that has explored the potential of a focus on indeterminate bodies for decision making, policy and politics. Drawing on different ways of conceptualising indeterminacy in scientific and policy domains it describes the Loweswater Care Project, a participatory ‘knowledge collective’ that attempted to avoid converting the complexities of vital cyanobacterial bodies into a purely social or managerial set of questions around water quality. Through a commitment to opening out the nature of ‘things’, participants in this collective honed (...) new questions and avenues of inquiry around cyanobacteria and its relations. The Loweswater Care Project was a kind of ‘open’ in Haraway’s sense, where questions and demands are put to bodies, and to the apparatus that allows us to sense them, in ways that do not shy away from the probabilistic character of entities and their relations. The implications of generating indeterminacies in this setting are explored for environmental decision making, policy and politics. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of empowerment (...) and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrap- olating it towards public health. By means of the “All of Us” (AoU) research pro- gram, launched by the National Institutes of Health in the U.S., PPH is being devel- oped based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine (...) to be able to tai- lor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal chal- lenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program. (shrink)