The fact that the emergence of “technoscience,” resulting from the coalescing of science and technology, may have serious social and cultural impact has been debated in recent years particularly with regard to the field of medicine. The present article is exploring the scope and limits of the “technoscientization” of medicine using the example of rare disease patient associations. It is investigated whether and to what extent these organizations adopt technoscientific illness identities and subscribe to the research priorities and objectives of (...) biomedicine. In addition, it is analyzed whether Paul Rabinow’s highly influential concept of biosociality entails a technoscientific model of identity or, quite to the contrary, offers a framework for contesting biomedical ascriptions of identities. As the article shows, patient associations do refer to technoscientific definitions of diseases yet constantly modify and transform them based on their everyday illness experiences. Likewise, the “biosociality” of rare disease patients emerges from the shared experience of having been neglected by mainstream medical research rather than from supposedly objective biomedical classifications. (shrink)

Roughly 40% of the sizeable medical research and literature on recently approved drugs is “ghost managed” by the pharmaceutical industry and its agents. Research is performed and articles are written by companies and their agents, though apparently independent academics serve as authors on the publications. Similarly, the industry hires academic scientists, termed key opinion leaders, to serve as its speakers and to deliver its continuing medical education courses. In the ghost management of knowledge, and its dissemination through key opinion leaders, (...) we see the pharmaceutical industry attempting to hide or disguise the interests behind its research and education. (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)

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from (...) or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem that sensor technology reveals things about the elderly patients without the patients being aware of this. I suggest improvement of these relations may be considered in aesthetic (...) terms, for instance by developing the affective quality of people’s technological relationships. (shrink)

This paper makes a conceptual inquiry into the notion of ‘publics’, and forwards an understanding of this notion that allows more responsible forms of decision-making with regards to technologies that have localized impacts, such as wind parks, hydrogen stations or flood barriers. The outcome of this inquiry is that the acceptability of a decision is to be assessed by a plurality of ‘publics’, including that of a local community. Even though a plurality of ‘publics’ might create competing normative demands, its (...) acknowledgment is necessary to withstand the monopolization of the process of technology appraisal. The paper presents four ways in which such an appropriation of publicness takes place. The creation of dedicated ‘local publics’, in contrast, helps to overcome these problems and allows for more responsible forms of decision-making. We describe ‘local publics’ as those in which stakeholders from the different publics that are related to the process of technology implementation are brought together, and in which concerns and issues from these publics are deliberated upon. The paper will present eight conditions for increasing the effectiveness of such ‘local publics’. (shrink)

This study adopts a narrative lens to investigate how place shapes the emergence and work of cross-sector partnerships (CSPs). Based on a qualitative inquiry of the marketization of Lapland, Finland, as the home of Santa Claus, four matters of concern around the ethicality of marketizing Lapland are followed: revitalization, commerciality, distortion, and imbalance. The findings show how CSPs emerge in the marketization of place through the mechanisms of narrative contestations and misalignment of marketized place and place-identity, and their (re)alignment at (...) the nexus of marketization. The contestations and misalignment generate matters of concern from place, which in turn mobilize CSPs via two interrelated narrative practices: (i) problematizing and (ii) reimagining the marketized place to realign it with place-identity. The paper contributes the construct of concerned partnerships to the literature of CSPs, a place-based form of CSPs which consist of both market and non-market actors, including the place and its social and material resources. They are formed through matters of concern that emerge through misalignments of marketized place and place-identity, to realign them and sustain a place at a nexus of marketization. (shrink)

Denmark was once at the forefront of nuclear research, operating three experimental nuclear reactors at the research facility at Risø, close to Copenhagen. However, the 1985 resolution of the Danish Parliament excluded nuclear power from the national energy mix. In 2003, the Parliament passed a resolution on the decommissioning of the nuclear facility at Risø, including plans for establishing a permanent solution for radioactive waste management. To understand the ensuing socio-technical controversy, we employ the “hybrid forum” framework that emphasizes the (...) entangled political-epistemological role of the municipalities and protest groups. They mobilized political resistance while also performing “research in the wild.” In 2016, the protest groups became part of an institutionalized “hybrid forum” where they could negotiate directly with experts and government representatives. We conclude that municipalities and protest groups were instrumental in changing the Danish position on radioactive waste management from final repository to long-term storage at Risø. (shrink)

Dominant forms of contemporary big-data based digital citizen science do not question the institutional divide between qualified experts and lay-persons. In our paper, we turn to the historical case of a large-scale amateur project on biogeographical birdwatching in the late nineteenth and early twentieth century to show that networked amateur research can operate in a more autonomous mode. This mode depends on certain cultural values, the constitution of specific knowledge objects, and the design of self-governed infrastructures. We conclude by arguing (...) that the contemporary quest for autonomous citizen science is part of a broader discourse on the autonomy of scientific research in general. Just as the actors in our historical case positioned themselves against the elitism of gentlemen scientists, avant-garde groups of the twenty first century like biohackers and civic tech enthusiasts position themselves against the system of professional science—while “digital citizen science” remains to oscillate between claims for autonomy and realities of heteronomy, constantly reaffirming the classic lay-expert divide. (shrink)

In recent years, there has been an intense debate about the concept of “biological” or “genetic citizenship.” The growing literature on this topic mostly refers to the importance of patients’ associations, disease advocacy organizations, and self-help groups that are giving rise to new forms of subjectivation and collective action. The focus is on the extension of rights, the emergence of new possibilities of participation, and the choice-enhancing options of the new genetics. However, this perspective tends to neglect the potential for (...) exclusion and restriction of citizenship rights based on biological traits. We aim to broaden and complement the existing theoretical discussion on biological citizenship, which so far has concentrated on the medical sphere, by investigating a new empirical field. The article analyzes the use of DNA analysis for family reunification and shows that biological criteria still play an important role in decision making on citizenship rights in nation-states. Presenting Germany as an exemplary case, we argue that the use of parental testing endorses a biological concept of the family that is mobilized to diminish citizenship rights. The argument is based on documentary analysis and on interviews with representatives of nongovernmental organizations and immigration authorities, lawyers, geneticists, and applicants for family reunification. (shrink)

The process of translation has both an excluding and including character. The analysis of actor networks, the process of mobilizing alliances, and constructing networks is a common and worthwhile focus. However, the simultaneous betrayals, dissidences, and controversies are often only implied in network construction stories. We aim to nuance the construction aspect of actor–network theory by shining the analytical searchlight elsewhere, where the theoretical tools of ANT have not yet systematically ventured. We argue that we need to understand every process (...) of translation in relation to its simultaneous process of treason, and to add antonyms for Callon’s problematization, intressement, enrollment, and mobilization. This enables us to describe powerlessness not as a state but as a process. Our case focuses on the network building around measures for disabled people in the construction of the Athens Metro, during the period 1991-1993. The discussion highlights the efforts of disability organizations to intervene in the initial construction works of the metro project and the simultaneous actions of the Greek government to exclude disability organizations from the design process and to disrupt the accessibility-metro actor network. (shrink)

The author traces the ways in which various patients and collective associations of patients come to regard themselves as the users of future stem cell technologies. The author uses Althusser’s notion of interpellation, whereby an identity is the result of the situated encounter of a subject and an authority, to analyze the ways in which patient associations’ current involvement with basic research is related to the enactment of science as a series of technology development projects. The author argues that this (...) ‘‘project-ness’’ forms a certain privileged logic that interpellates patients and their associations in specific ways. Through the listings of illnesses circulated in the mass media, which are hoped to be treatable or curable with stem cell therapies, patients come to recognize themselves as the projected users of stem cell technologies. The author fleshes out the process of this userfication and the various responses made by patients and their associations when hailed by the entrepreneurial projects of stem cell research. (shrink)

The very existence of explicit techno-scientific controversies in the “nano” arena is often denied on behalf of a conception of science, risks, public engagement and responsibility which borders on a disembodied idealism and merits at least serious discussion. The recurrence of this view prompted us to clarify our position regarding our common field of research, in order to avoid being trapped in the seemingly clear divide between the universal and neutral pursuit of pure science, on the one hand, and on (...) the other hand the infinite variety of values and opinions that lead to the horrors throes of pure relativism. We therefore launched an internal trans-disciplinary project, in order to overhaul the premises underpinning both this idealistic standpoint and our own work, and to find a better definition of our approach to the exploration of the real policy implications of NST research initiatives. Indeed, the debates surrounding NST clearly have wider implications for the examination of issues of Science, Technology and Society as a whole. A first step in this clarification process was taken in Paris, at the conference which has now been published in this issue of Foundations of Chemistry. We further develop it in this paper, in the hope that it will contribute to the joint construction of a better nano-future. (shrink)

Bruno Latour once argued that science laboratories actively modify the wider society by displacing crucial actors outside the laboratory into the “field.” This article turns this idea on its head by using the case of geothermal energy utilization to demonstrate that in many cases it is the experimental setup outside the laboratory that is there first, with the activities normally associated with a laboratory setting only being decided upon and implemented post hoc. As soon as the actors involved perceive unknowns (...) and uncertainties, these are relocated to various kinds of closed laboratories to be dealt with in a more controlled environment. This is done, for instance, by inviting stakeholders to laboratory-like settings or by analyzing the geochemical composition of fluids in laboratories. Thus, the risk-laden production of new knowledge by means of real-world experimentation amounts to a practice of relocating the context of discovery in society to laboratories of justification sometimes defined as such post hoc. Experimental processes in society can then be conceptualized as “real” experiments and laboratory activities as merely temporarily subordinated components of the larger experiment. (shrink)

A pesar de algunos antecedentes dispersos y excepciones, existe una manifiesta laguna en la literatura sobre el concepto de cultura científica comunitaria. Con esa expresión nos referimos a situaciones en las cuales unos ciudadanos perciben un problema, se agrupan, organizan, comunican y ponen en común sus recursos para buscar, evaluar y producir conocimiento científico con el fin de encarar dicho problema. En este trabajo realizamos una propuesta de caracterización de la cultura científica comunitaria. Posteriormente, procedemos a aplicarla y contrastarla respecto (...) del caso de los colectivos de afectados por la COVID persistente. La metodología empleada se ha basado en el análisis documental. (shrink)

This article reports on ethnographic research into the practical and ethical consequences of the implementation and use of telecare devices for older people living at home in Spain and the United Kingdom. Telecare services are said to allow the maintenance of their users’ autonomy through connectedness, relieving the isolation from which many older people suffer amid rising demands for care. However, engaging with Science and Technology Studies literature on “user configuration” and implementation processes, we argue here that neither services nor (...) users preexist the installation of the service: they are better described as produced along with it. Moving beyond design and appropriation practices, our contribution stresses the importance of installations as specific moments where such emplacements take place. Using Etienne Souriau’s concept of instauration, we describe the ways in which, through installation work, telecare services “bring into existence” their very infrastructure of usership. Hence, both services and telecare users are effects of fulfilling the “felicity conditions” of an achieved installation. (shrink)

The management of commons is now at the centre of researchers’ attention in many branches of science, particularly those related to the human or social sciences. This paper seeks to demonstrate how civil society participation in common goods or resources is not only possible but is also desirable for society because of the medium and long-term benefits it offers involved and/or affected parties. To this end, we examine the falsity of the discourse underlying the supposed incompetence of civil society to (...) cooperate interpersonally in the pursuit of common objectives, and also analyse a specific example of the necessary and possible participation of civil society in managing common goods through biobanks.La gestión del bien común se ha convertido actualmente en centro de atención para diferentes ramas de la ciencia, especialmente aquellas vinculadas con lo humano y lo social. El presente estudio busca mostrar cómo la participación de la sociedad civil en la gestión de este tipo de bienes o recursos no sólo es posible, sino deseable para la sociedad por los beneficios que reporta a las partes implicadas y/o afectadas a medio y largo plazo. Para ello, se atenderá la falsedad del discurso sobre el cual se asienta la supuesta incompetencia de la sociedad civil para poder cooperar interpersonalmente en busca de objetivos comunes, así como se analizará un ejemplo concreto de la necesaria y posible participación de la sociedad civil en la gestión del bien común a través de los centros de recursos biológicos (brcs). (shrink)

This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to (...) the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations. (shrink)

Over the past 20 years, the participation of laypersons or representatives of civil society has become a guiding principle in processes of research and innovation. There is now a significant litera...

Ensuring patient participation in healthcare decision making remains a difficult task. Factors such as a lack of time in the consultation, medical objectivation, or the difficulties of translating individual patient experience into the treatment plan have been shown to limit patient contributions. Little research attention has focused however on how emotions experienced by both the patient and the healthcare provider may affect the ability of the patient to participate. In this research, patient’s and healthcare provider’s emotions were identified and analysed. (...) The research method showed fear as a prominent emotion experienced. This included patient’s fears both inside and outside the consultation, as well as the healthcare provider’s fears in their professional practice. Using Martha Nussbaum’s cognitive-evaluative theory of emotions as an additional means of analysis, the research looked at what this emotion could show about the importance of the object of this fear to the person’s eudaimonia (flourishing). At the end of the article, several solutions were proposed to help mitigate this fear to keep it from becoming a destructive force in the healthcare provider—patient relationship. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced by a variety (...) of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

The controversy over the prescription drug, alosetron, is examined in order to investigate what is permitted to count as ‘therapeutic advance’ and ‘therapeutic breakthrough’ within pharmaceutical innovation and regulation. It is argued that those official accounting categories can mask very modest efficacy of some drugs by reference to the official techno-scientific evidence, thus leading to questionable acceptance of risks to public health. This is explained by: the drug availability options set by the commercial interests of manufacturers; the FDA management's need (...) to demonstrate rapid approval of therapeutic advances to their budgetary masters, especially in the context of patient demands for access to new drugs; and the increasing capacity of patient groups, sometimes in collaboration with pharmaceutical manufacturers, to challenge techno-scientific expertise and evidence with experiential testimony. It is concluded that regulatory policy-makers need much more sophisticated accounting systems for differentiating between drugs defined as significant therapeutic advances, and between drugs (‘therapeutic breakthroughs’ fast-tracked to treat serious or life-threatening conditions. Contrary to some STS analyses, the desirability of an ascendancy of patients’ anecdotal evidence in regulatory decisions for public health is questioned. (shrink)

In this paper, I combine the actor-network economic sociology of disability with recent developments in phenomenological, embodied cognitive science, to discuss how ability, calculative agency, and meaning are distributed throughout materially situated sociocognitive systems. I begin by outlining the actor-network approach to disability, market formation, and economic agency. Next, I turn to the cognitive sciences, and describe the emergence of consciousness and meaning in embodied human being. With an operative synthesis of the two projects in place, I turn to government-organized (...) disability savings plans in Canada. I suggest that the low uptake of these plans can be explained using the theoretical synthesis provided in the first two sections of this paper, giving a robust account of the threefold distribution of ability, calculative agency, and meaning. (shrink)

Comment le système associatif contribue-t-il à façonner les représentations et les politiques publiques en matière d’autisme? Cette question renvoie au rôle plus général des mouvements sociaux. Dans le domaine de la santé, ces mouvements participent de plus en plus à l’action publique et acquièrent une influence grandissante. Les associations de parents d’enfants autistes ont contribué à la prise de conscience du public et ont joué un rôle croissant dans les changements des représentations et des politiques publiques en matière d’autisme mais (...) un fossé s’est creusé entre les positions adoptées par des « experts associatifs » qui pèsent sur les décisions politiques et les situations que vivent au quotidien de nombreux parents. Cet article sur le rôle des associations de parents d’enfants autistes aux États-Unis et en France vise à analyser la montée en puissance d’un lobbying associatif qui influence les autorités politiques afin d’établir de nouvelles normes en matière d’autisme. (shrink)