The concept of interactional expertise – characterized by sociologists Harry Collins and Robert Evans as the ability to speak the language of a discipline without the corresponding ability to practice – can serve as a powerful way of breaking down expert/non-expert dichotomies and providing a role for new voices in specialist communities. However, in spite of the vast uptake of this concept and its potential to fruitfully address many important issues related to scientific expertise, there has been surprisingly little critical (...) analysis of it. We seek to remedy this situation by considering potential benefits of interactional expertise and the ways in which the current conception can – and cannot – realize those benefits. In particular, we argue that interactional expertise hasn’t reached its full potential for addressing who ought to be involved in scientific research and decision-making, largely owing to an unnecessarily restrictive way of operationalizing the concept. In its place, we offer a broader, more pluralistic account of interactional expertise – one that is in line with the original spirit of the concept, but also captures the diversity that we see as being an important aspect of interactional experts and the value they can bring to the table. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

I analyse the case of three Japanese-Portuguese interpreters who have given support to technology transfer from a steel company in Japan to one in Brazil for more than thirty years. Their job requires them to be ‘interactional experts’ in steel-making. The Japanese–Portuguese interpreters are immersed in more than the language of steel-making as their job involves a great deal of ‘physical contiguity’ with steel-making practice. Physical contiguity undoubtedly makes the acquisition of interactional expertise easier. This draws attention to the lack (...) of empirical work on the exact way that the physical and the linguistic interact in the acquisition of interactional expertise, or any other kind of expertise.Keywords: Interactional expertise; Technology transfer; Interpreting; Physical contiguity; Linguistic socialization. (shrink)

This paper explores the evolution of a trading zone by organizing the case study of turtle excluder devices within the model proposed by Collins et al.. The case study offers evidence that trading zones do evolve and that the concepts of enforced and fractionated trading zones hold practical utility for describing and defining the complexities of actual exchanges. In this case a trading zone evolved from enforced to fractionated and ultimately diverged into two trading zones. For each step of the (...) evolution I describe the forces that drove these transitions. Finally, I present an adapted trading zone model that is conceptually a better fit for the turtle excluder device case study.Keywords: Trading zones; Interactional expertise; Turtle excluder device; Bycatch. (shrink)

Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well‐intended actions become public performativity, and trust building will (...) fail. In this essay, we draw upon foundational ethical principles of trust, distrust, and trust building; apply the concept of bounded justice to performative trust acts; and center the works of Black and Indigenous feminist bioethicists to revisit some of the wisdom and valuable lessons they have contributed. Rebuilding trust is hard to do because people and institutions are often not honest about how hard it is and there is no simple box‐checking task that can disentangle our society's injustices, but there are steps to take in this direction. Individuals and institutions can recognize valuable relevant work that has already been written, partake in critical reflection, and then apply insights gained to take both small and sustainable steps toward transformational change and deeper trust. (shrink)

Some vaccine-hesitant people lack epistemic trust in the COVID-19 vaccine recommendation that because vaccines have been shown to be medically safe and effective, one ought to get vaccinated. Citing what I call exception information, they claim that whatever the general safety and efficacy of vaccines, the vaccines may not be safe and effective for them. Examples include parents citing information about their children's health, pregnant women's concerns about the potential adverse effects of treatment on pregnant women, young people citing their (...) relative invulnerability to extreme COVID-19 symptoms, or members of vulnerable racial groups citing epistemic injustice, such as a lack of representation in COVID-19 vaccine trials. This paper examines the extent to which a lack of epistemic trust in vaccine recommendations, based on such exemption information, is rational. (shrink)

Background The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional (...) public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders.Methods In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues.Results Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals’ data are used.Conclusions MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes. (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)

Philosophical tradition and conspiracy theorists converge in suggesting that ordinary people ought to do their own research, rather than accept the word of others. In this paper, I argue that it’s no accident that conspiracy theorists value lay research on expert topics: such research is likely to undermine knowledge, via its effects on truth and justification. Accepting expert testimony is a far more reliable route to truth. Nevertheless, lay research has a range of benefits; in particular, it is likely to (...) lead to greater understanding, even when it does not lead to knowledge. I argue that we can reap most of the genuine benefits of lay research while minimizing the risks by engaging in exploratory, rather than truth-directed, inquiry. To engage in exploratory inquiry is to engage dogmatically, expecting to be unable to confirm the expert view or to disconfirm rivals. (shrink)

Between the second half of the 2000s and the first half of the 2010s, the prospect of shale gas extraction in Europe at first prompted fervent political support, then met with local and national opposition, and was finally rendered moot by a global collapse in the oil price. In the Europe-wide protests against shale gas and the main technique employed to extract it, hydraulic fracturing, counter-expertise played a crucial role. This kind of expertise is one of the main elements of (...) “energy citizenship,” a concept recently developed in the field of energy humanities which describes the empowerment of citizens in decision-making processes related to energy issues. This paper provides a socio-historical analysis of the co-production of counter-expertise and energy citizenship in the two European countries endowed with the largest shale gas reserves: Poland and France. In my analysis, concerns over the disruption of the food-water-energy nexus due to possible pollution emerge as particularly important. I argue that the exchange of information between activist groups and NGOs, as well as between activist groups from distant European locations, allowed for the creation of a genuinely transnational and science-based anti-fracking movement. (shrink)

Between the second half of the 2000s and the first half of the 2010s, the prospect of shale gas extraction in Europe at first prompted fervent political support, then met with local and national opposition, and was finally rendered moot by a global collapse in the oil price. In the Europe-wide protests against shale gas and the main technique employed to extract it, hydraulic fracturing, counter-expertise played a crucial role. This kind of expertise is one of the main elements of (...) “energy citizenship,” a concept recently developed in the field of energy humanities which describes the empowerment of citizens in decision-making processes related to energy issues. This paper provides a socio-historical analysis of the co-production of counter-expertise and energy citizenship in the two European countries endowed with the largest shale gas reserves: Poland and France. In my analysis, concerns over the disruption of the food-water-energy nexus due to possible pollution emerge as particularly important. I argue that the exchange of information between activist groups and NGOs, as well as between activist groups from distant European locations, allowed for the creation of a genuinely transnational and science-based anti-fracking movement.ZuammenfassungZwischen der zweiten Hälfte der 2000er und der ersten Hälfte der 2010er Jahre, löste die Aussicht auf die Förderung von Schiefergas in Europa zuerst weitreichende politische Begeisterung aus, dann Gegeninitiativen auf der lokalen und nationalen Ebene, und schließlich Resignation, als ein weltweiter Einbruch des Ölpreises die Gewinnannahmen des Unternehmens in Frage stellte. Im Erfolg der europäischen Proteste gegen Schiefergas und „hydraulic fracturing“ war die Rolle der Gegenexpertise entscheidend. Diese Art von Expertise ist eines der Hauptelemente von „energy citizenship“, ein Konzept das kürzlich im Bereich der „Energy Humanities“ entwickelt wurde und für die Befähigung des Bürgers zur Entscheidungsfindung in energiebezogenen Fragen steht. Die vorliegende Studie analysiert die kooperative Produktion von Gegenexpertise und die Schaffung von „energy citizenship“ in den beiden europäischen Ländern, die mutmaßlich über die größten Schiefergasvorkommen verfügen: Polen und Frankreich. Aus dieser Analyse geht hervor, dass Besorgnis über die Störung des Nahrungsmittel-Wasser-Energie-Nexus aufgrund einer möglichen Verschmutzung durch industrielle Aktivitäten im Vordergrund stand. Der Informationsaustausch zwischen Aktivistengruppen und spezialisierten NGOs sowie zwischen Aktivistengruppen in verschiedenen europäischen Orten ermöglichte die Entstehung einer transnationalen, wissenschaftsbasierten Anti-Fracking-Bewegung. (shrink)

Most literature about vaccine hesitancy has been focused on parental attitudes. Less attention has been devoted to both scientists and experts who raise criticism about immunization policies and intervene in the public debate. This consideration aims to balance the current emphasis in the literature on parents’ attitudes about vaccination, offering a complementary angle to reframe and widen the controversy. Focusing on scientists and experts, an unattended complex picture of multiple attitudes towards vaccines and vaccinations has been discovered through a qualitative (...) content analysis of texts related to the harsh public debate, held between March 2017 and November 2018, triggered by the legislative proposal of making ten vaccinations mandatory for children. Unlike oversemplications that misleading dichotomies reproduce, the analysis reveals nine different positions along the continuum of immunisation attitudes, ranging from radical acceptance of vaccinations to radical rejection, which constitute a fuzzy set. Consequently, a twofold reality emerges: on the surface, the conflict seems between pro-vaxxers versus hesitant, pro-choice and anti-vaxxers; beneath it is amid standardized versus a varieties of contextual and personalised approaches to health. (shrink)

The COVID-19 crisis has highlighted the considerable challenge of sourcing expertise and determining which experts to trust. Dissonant information fostered controversy in public discourse and encouraged an appeal to a wide range of social indicators of trustworthiness in order to decide whom to trust. We analyze public discourse on expertise by examining how social indicators inform the reputation of Dr. Didier Raoult, the French microbiologist who rose to international prominence as an early advocate for using hydroxychloroquine to treat COVID-19. To (...) comprehend how these indicators came to inform his reputation, we outline Dr. Raoult's rise to fame based on discourse about hydroxychloroquine. We then discuss why we trust in experts like scientist-practitioners. This is followed by an examination of how social indicators of trust like status, epistemic authority, influence and values have informed Dr. Raoult's reputation. We conclude with recommendations for how to improve the selection and evaluation social indicators of trust and reputations. Our aim here, instead of making a claim about the efficacy of hydroxychloroquine or Dr. Raoult's reputation per se, is to outline through this case study how social indicators of trust inform reputation and the challenge they present to evaluating expertise. (shrink)

Social inequality may obstruct the generation of knowledge, as the rich and powerful may bring about social acceptance of skewed views that suit their interests. Epistemic equality in the context of justification is a means of preventing such obstruction. Drawing on social epistemology and theories of equality and distributive justice, we provide an account of epistemic equality. We regard participation in, and influence over a knowledge-generating discourse in an epistemic community as a limited good that needs to be justly distributed (...) among putative members of the community. We argue that rather than trying to operationally formulate an exact criterion for distributing this good, epistemic equality may be realized by insisting on active participation of members of three groups in addition to credited experts: relevant disempowered groups, relevant uncredited experts, and relevant stakeholders. Meeting these conditions fulfills the political, moral, and epistemic aims of epistemic equality. (shrink)

The place of scientific expertise in democracy has become increasingly disputed, raising question who ought to have a say in decision-making about science and technology, with what authority, and for what reasons. Public engagement has become a common refrain in technoscientific discussions to address tensions in the rightful roles of experts and the public in democratic decision-making. However, precisely what public engagement entails, who it involves, how it is performed, and to what extent it is desirable for democratic societies remain (...) contested matters. Nevertheless, strong commitments to greater public engagement in the governance of science and technology persist. This essay examines expert discussions about heritable human genome editing beginning from the 2015 International Summit on Human Genome Editing through the controversies surrounding of the first CRISPR-edited humans in late 2018 and the subsequent renewed calls for a moratorium on heritable human genome editing. I examine these discussions as example cases in which the right relations among experts, the public, and technoscientific decision-making are actively reconfigured. I argue that rather than expanding the range of included stakeholders, public engagement serves as an enabling handservant of technocracy that reinforces the position of scientific experts in decision-making as both epistemic and normative authorities. (shrink)

An ongoing trend in technology policy has been to advocate participation. However, the author claims that lay citizens’ participation typically materializes in the form of a laboratory experiment at present. That is, lay participation as currently organized by professional participation experts under controlled conditions rarely is linked to public controversies, to the pursuit of political participation or to individual concerns. Derived from qualitative research on two citizen conferences, the author shows empirically that in practice, this laboratory participation leads to paradoxical (...) effects: successfully carrying out the experiment results in a systematic disappointment of the hope for gains in rationality typically attached to lay participation. Finally, the author relates this result to sociological debates about new modes of knowledge production. Under such a perspective, the author sees a paradoxical development: while society at large is becoming a laboratory in which knowledge is produced, participation practice is retreating from society into the lab. (shrink)

This article explores the social frameworks guiding expert and nonexpert perspectives on medicines safety in the U.K. Scientific experts from the Committee on the Safety of Medicines and the Medicines Commission were interviewed, and three nonexpertgroups, including patients and health professionals, were studied by the administration of questionnaires and focused group discussions. The research examined to what extent these groups subscribed to technocratic or democratic approaches to medicines regula tion and how this might be related to values toward technological risk. (...) The results reveal that there is substantial divergence between expert and nonexpert perspectives on medicines regulation, and that this derives as much from value differences as from any informational deficits. However, there seems to be some scope for shared values between some experts and some nonexperts, especially as regards state secrecy. The article concludes by discussing how those values could be used to foster a new "social contract of expertise" in which scientists are more democratically accountable and patients take more responsibility in governing medical risks. (shrink)

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)

. Given the importance of the issue of scientific objectivity in our democratic societies and the significant development of citizen science, it is crucial to investigate how citizen science may either undermine or foster scientific objectivity. This paper identifies a variety of epistemic risks and benefits that participation of lay citizens in scientific inquiries may bring. It also discusses concrete actions and pending issues that should be addressed in order to foster objectivity in citizen science programs.

Philosophers of science are increasingly arguing for and addressing the need to do work that is socially and scientifically engaged. However, we currently lack well-developed frameworks for thinking about how we should engage other expert communities and what the epistemic benefits are of doing so. In this paper, I draw on Collins and Evans' concept of ‘interactional expertise’ – the ability to speak the language of a discipline in the absence of an ability to practice – to consider the epistemic (...) benefits that can arise when philosophers engage scientific communities. As Collins and Evans argue, becoming an interactional expert requires that one ‘hang out’ with members of the relevant expert community in order to learn crucial tacit knowledge needed to speak the language. Building on this work, I argue that acquiring interactional expertise not only leads to linguistic fluency, but it also confers several ‘socio-epistemic’ benefits such as the opportunity to cultivate trust with scientific communities. These benefits can improve philosophical work and facilitate the broader uptake of philosophers' ideas, enabling philosophers to meet a variety of epistemic goals. As a result, having at least some philosophers of science acquire interactional expertise via engagement will likely enhance the diversity of epistemic capacities for philosophy of science as a whole. For some philosophers of science, moreover, the socio-epistemic benefits identified here may be more important than the ability to speak the language of a discipline, suggesting the need for a broader analysis of interactional expertise, which this paper also advances. (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)

This paper puts forward a theoretical framework for the analysis of expertise and experts in contemporary societies. It argues that while prevailing approaches have come to see expertise in various forms and functions, they tend to neglect the broader historical and societal context, and importantly the relational aspect of expertise. This will be discussed with regard to influential theoretical frameworks, such as laboratory studies, regulatory science, lay expertise, post-normal science, and honest brokers. An alternative framework of expertise is introduced, showing (...) the limitations of existing frameworks and emphasizing one crucial element of all expertise, which is their role in guiding action. (shrink)

In a White House ceremony on May 16, 1997, President Clinton issued an apology on behalf of the nation for the Tuskegee Syphilis Study, a forty-year research project in which African-American men were deceived and denied treatment in order to document the natural course of syphilis. Reflection on this occasion can give us pause to take pride in the progress made toward more ethical research with humans. The President's apology is perhaps the most public of a number of recent events (...) representing a renewed attention to ethics in research with human participants. Alongside it stand the efforts of treatment activists for people with acquired immune deficiency syndrome and the revelations of the human radiation experiments. In 1995, President Clinton called for the creation of the National Bioethics Advisory Commission, which was charged with a host of projects aimed at investigating the organization and function of the federal system for overseeing human subjects research in the United States, and giving guidance on specific forms of research. (shrink)

Why and how have lay people participated in scientific observation? And on what terms have they collaborated with experts and professionals? We have become accustomed to the involvement of lay observers in the practice of many branches of science, including both the natural and human sciences, usually as subordinates to experts. The current surge of interest in this phenomenon, as well as in the closely related topic of how expertise has been constructed, suggests that historians of science can offer a (...) valuable contribution to these vital questions. A historical approach to lay participation allows us to better understand the making of expert-lay relations in science, and it offers a broader, long-term perspective on contemporary debates about that boundary. (shrink)

Experimentation in Technological Wisdom: Can the Political be Kept off the Practice Ground?Gert GoeminneCentre Leo Apostel, Vrije Universiteit Brussel, BelgiumCentre for Sustainable Development, Ghent University, Belgiume-mail: [email protected] Welcome VoiceI met Michel Puech for the first time in 2008 at a workshop entitled ‘Artificial Environments.’ In an interdisciplinary Science and Technology Studies spirit, this 2-day event at Roskilde University gathered philosophers and sociologists of science and technology, as well as architecture theorists. Being rather new to the STS-field at that point, I (...) had read the main authors of the Anglo-Saxon tradition, including Andrew Pickering and Peter‐Paul Verbeek, who were present at the workshop. And sure, I had acquainted myself with the work of the French masters such as Bruno Latour, Gilbert Simondon and Bernard Stiegler. I had never heard of the French philosopher of technology Michel Puech, though. But there he was, startin .. (shrink)

Civil society organizations (CSOs) have significantly impacted on the politics of health research and the field of bioethics. In the global HIV epidemic, CSOs have served a pivotal stakeholder role. The dire need for development of new prevention technologies has raised critical challenges for the ethical engagement of community stakeholders in HIV research. This study explored the perspectives of CSO representatives involved in HIV prevention trials (HPTs) on the impact of premature trial closures on stakeholder engagement. Fourteen respondents from South (...) African and international CSOs representing activist and advocacy groups, community mobilisation initiatives, and human and legal rights groups were purposively sampled based on involvement in HPTs. Interviews were conducted from February-May 2010. Descriptive analysis was undertaken across interviews and key themes were developed inductively. CSO representatives largely described positive outcomes of recent microbicide and HIV vaccine trial terminations, particularly in South Africa, which they attributed to improvements in stakeholder engagement. Ongoing challenges to community engagement included the need for principled justifications for selective stakeholder engagement at strategic time-points, as well as the need for legitimate alternatives to CABs as mechanisms for engagement. Key issues for CSOs in relation to research were also raised. (shrink)

This article draws attention to struggles inherent in discourse about the meaning of participation in a Flemish participatory technology assessment (pTA) on nanotechnologies. It explores how, at the project’s outset, key actors (e.g., nanotechnologists and pTA researchers) frame elements of the process like ‘the public’ and draw on interpretive repertoires to fit their perspective. The examples call into question normative commitments to cooperation, consensus building, and common action that conventionally guide pTA approaches. It is argued that pTA itself must reflect (...) an awareness of competing interests and perspectives inherent in the discourse associated with the meaning of ‘participation’ if it is to incite action beyond vested interests and ensure genuine mutual learning. (shrink)

There is growing need for hybrid curricula that integrate constructivist methods from Science and Technology Studies (STS) into both engineering and policy courses at the undergraduate and graduate levels. However, institutional and disciplinary barriers have made implementing such curricula difficult at many institutions. While several programs have recently been launched that mix technical training with consideration of “societal” or “ethical issues,” these programs often lack a constructivist element, leaving newly-minted practitioners entering practical fields ill-equipped to unpack the politics of knowledge (...) and technology or engage with skeptical publics. This paper presents a novel format for designing interdisciplinary coursework that combines conceptual content from STS with training in engineering and policy. Courses following this format would ideally be team taught by instructors with advanced training in diverse fields, and hence co-learning between instructors and disciplines is a key element of the format. Several instruments for facilitating both student and instructor collaborative learning are introduced. The format is also designed for versatility: in addition to being adaptable to both technical and policy training environments, topics are modularized around a conceptual core so that issues ranging from biotech to nuclear security can be incorporated to fit programmatic needs and resources. (shrink)

Research collaborations beyond the boundaries of science—such as transdisciplinary, participatory or co-research projects—usually aim at increasing the societal impact of the research conducted. In the literature discussing such collaborations, as well as in science policy endorsing them, it is generally assumed that the wanted societal impact is achieved through exchange that contributes to knowledge production and to the results of the research. However, collaboration beyond the boundaries of science can help a research project reach its societal impact goals even if (...) it does not contribute to the epistemic outcomes of the project at all. Instead, other kinds of contributions from the extra-academic partners, and what the extra-academic partners receive from the collaboration, can be crucial. Recognizing this helps us to better understand existing practices, and to identify potentially interesting forms of collaboration beyond the boundaries of science. (shrink)

Around 1970, high numbers of traffic casualties among cyclists led to the creation of numerous local protest movements in the Netherlands. While activists employed protest strategies, their main interest lie in the way they exemplify a highly successful instance of “lay expertise”; the idea that users of a technology have a fundamentally different and valuable perspective on a technology than experts or system-builders. Specifically, cyclists claimed to be more knowledgeable about cycling conditions and safety than the state-employed engineers and traffic (...) experts who built the roads and cycling path network. A key actor in this story is the Dutch Cyclists’ Union, a national platform of local action groups formed in 1975. These activists used the cycling experience of everyday utilitarian cyclists to compile maps and blacklists of locations where cycling was dangerous, unpleasant, uncomfortable, or otherwise discouraging. In doing so, they successfully claimed legitimacy as a valuable knowledge partner for local engineers and policymakers. As a result, they gained some level of influence within local governments, a relation which in the intervening years has only grown stronger. This case study shows how users can shape socio-technical systems bottom-up, and can therefore to an extent be seen as a successful example of co-construction of technology. (shrink)

Well before patient-centered or patient-controlled research became trendy, and earlier than calls to preferentially refer to research subjects as participants, Bob Veatch wrote “The Patient as Partner” Veatch presciently argued that research patients should not be thought of as passive subjects nor material from which to obtain data, but rather as partners in discovery. In this manuscript, I will explore Veatch’s conception of patient as partner in research and how that idea has evolved and been implemented over time and consider (...) some of the remaining challenges. Complexities of patient partnership include: clarifying the types of research in which patient partnership is most appropriate, recognizing the various possible levels of patient engagement in each case, avoiding tokenism and striving for respectful partnership, and keeping in mind the appropriate implementation of protections and safeguards. Bob Veatch would be pleased with the progress that has been made in creating research partnerships with patients, while also undoubtedly pushing us to continue to do better. (shrink)

Against the background of an increasing dependency of governance on specialized expertise and growing calls for citizen participation, this study discusses solutions to the tension between knowledge and democracy. It asks: Which institutions and practices add to striking a balance between knowledge-based decision-making and the involvement of the affected? Based on the social studies of science, knowledge and expertise as well as democratic theory with a focus on participation, representation and inclusion, the study first identifies quality criteria of expertise and (...) participation, and then, with reference to two quite different, up-and-coming empirical answers to the epistemic-democratic tension, spells out the conditions of realizing these criteria in practice. In focus are a) highly complex, multi-layered structures of policy deliberation and advice that combine expert panels with a range of public input channels and b) the involvement of ‘lay experts’ into policy-making through participatory knowledge practices such as ‘service user involvement’ or ‘citizen science’. The study underlines, inter alia, how claims that transcend individual viewpoints and integrate a multiplicity of experiences and concerns are of particular democratic and epistemic value; it points to the key role of organized advocacy groups when it comes to credibly combining a mandate to speak for others with useful and reliable experience-based expertise; and it illustrates the relevance of conflict-minimising institutions for the making of public policies. (shrink)

In the scenario of growing polarization of promises and dangers that surround artificial intelligence (AI), how to introduce responsible AI and robotics in healthcare? In this paper, we develop an ethical–political approach to introduce democratic mechanisms to technological development, what we call “Caring in the In-Between”. Focusing on the multiple possibilities for action that emerge in the realm of uncertainty, we propose an ethical and responsible framework focused on care actions in between fears and hopes. Using the theoretical perspective of (...) Science and Technology Studies and empirical research, “Caring in the In-Between” is based on three movements: the first is a change of focus from the world of promises and dangers to the world of uncertainties; the second is a conceptual shift from assuming a relationship with robotics based on a Human–Robot Interaction to another focused on the network in which the robot is embedded (the “Robot Embedded in a Network”); and the last is an ethical shift from a general normative framework to a discussion on the context of use. Based on these suggestions, “Caring in the In-Between” implies institutional challenges, as well as new practices in healthcare systems. It is articulated around three simultaneous processes, each of them related to practical actions in the “in-between” dimensions considered: monitoring relations and caring processes, through public engagement and institutional changes; including concerns and priorities of stakeholders, with the organization of participatory processes and alternative forms of representation; and making fears and hopes commensurable, through the choice of progressive and reversible actions. (shrink)

This paper is about a drug called misoprostol and its controversial clinical and social lives. Although originally developed as a prevention for gastric ulcers, in the 1980s, it developed an off-label reputation as an abortifacient. The drug’s association with clandestine abortion has profoundly shaped its social life as a marginal and suspect character in the realm of global maternal and reproductive health where it has the potential to prevent two major causes of maternal death––postpartum hemorrhage and unsafe abortion. The social (...) life of misoprostol has also been shaped by the question of authoritative practice, that is, the question of who can deliver medicine. Both issues are about the specters of misuse of misoprostol: off-label, illegal, immoral, or by unlicensed providers. In this paper, I focus ethnographically on two women’s health nongovernmental organizations that have been conducting clinical testing and advocacy for the use of misoprostol for reproductive indications in global maternal health settings. Drawing on the notions of pharmaceutical activism and protocol feminism, I describe and analyze how the tools of evidence and authoritative practice have been reassembled in new networks of expertise toward the social justice goals of life, access, and dignity for women. (shrink)

Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public (...) debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel. (shrink)

Development of the cochlear implant, discussed in this article, depended vitally on deaf people being persuaded to undergo implantation. Media "reconstruction" of the device as the "bionic ear" was typically encouraged by implant pioneers. Unexpectedly, however, a "counter-rhetoric" based on a very different understanding of deafness emerged. With it, deaf people are slowly succeeding in gaining influence over the further deployment of the technology. The analysis suggests modifications to existing theoretical models of technological change in medicine.

This article analyzes the rise and fall of a public health ‘fact’ in the US: the assertion that gay men’s Viagra use is inherently recreational and increases STD risk. Extending the science studies argument that drug development and marketing entail the construction of new publics, this article shows how strategic drug marketing silences can also constitute new populations of users. It shows how Viagra marketing’s silence about gay users, which facilitated legitimization of the drug as an aid for companionate heterosexuality, (...) created a cultural space for the development of health discourse about gay men as illegitimate, recreational and risky Viagra users. Using Susan Leigh Star’s concepts of ‘simplification’ and ‘complexification’, this article traces the construction and deployment of this public health fact, as well as its subsequent contestation. Using an arena analysis approach, this article demonstrates how marketing discourse and public health fact-making came together in the case of gay Viagra use to refresh long-standing and politically harmful American cultural associations between gay sex and sickness. (shrink)

Few empirical studies have explored how different types of knowledge are associated with diverse objectivities and moral economies. Here, we examine these associations through an empirical investigation of the public policy debate in Israel around medical cannabis, which may be termed a contested medicine because its therapeutic effects, while subjectively felt by users, are not generally recognized by the medical profession. Our findings indicate that beneath the MC debate lie deep-seated issues of epistemology, which are entwined with questions of ethics (...) and morality. Whereas some stakeholder groups viewed evidence-based medicine and mechanical objectivity as the only valid knowledge base, others called for recognition of a particular experience-based knowledge, championing regulatory, administrative, or strong objectivity. Stakeholders’ interpretations of what should be considered as ethical courses of action corresponded to their epistemological views, with most criticizing the regulators for relying on regulatory subjectivity instead of objectivity. Our in-depth mapping of this arena allowed us not only to shed light on the emergence of the new entity called “medical cannabis” but also to reexamine the link between epistemology, ethics, and action and to elucidate how heterogeneous groups view the validity and objectivity of knowledge and the interface between medicine, science, and policy. (shrink)

The central topic of this paper is a mobile phone application, ‘InformaCam’, which turns metadata from a surveillance risk into a method for the production of public proof. InformaCam allows one to manage and delete metadata from images and videos in order to diminish surveillance risks related to online tracking. Furthermore, it structures and stores the metadata in such a way that the documentary material becomes better accommodated to evidentiary settings, if needed. In this paper I propose InformaCam should be (...) interpreted as a ‘forensic device’. By using the conceptualization of forensics and work on socio-technical devices the paper discusses how InformaCam, through a range of interventions, rearranges metadata into a technology of evidence. InformaCam explicitly recognizes mobile phones as context aware, uses their sensors, and structures metadata in order to facilitate data analysis after images are captured. Through these modifications it invents a form of ‘sensory data forensics'. By treating data in this particular way, surveillance resistance does more than seeking awareness. It becomes engaged with investigatory practices. Considering the extent by which states conduct metadata surveillance, the project can be seen as a timely response to the unequal distribution of power over data. (shrink)

Populist protests against Coronavirus-related restrictions in the US appear paradoxical in three respects. Populism is generally hostile to expertise, yet it has flourished at a moment when expertise has seemed more indispensable than ever. Populism thrives on crisis and indeed often depends on fabricating a sense of crisis, yet it has accused mainstream politicians and media of overblowing and even inventing the Corona crisis. Populism, finally, is ordinarily protectionist, yet it has turned anti-protectionist during the pandemic and challenged the allegedly (...) overprotective restrictions of the nanny-state. I address each apparent paradox in turn before speculating in conclusion about how populist distrust of expertise, antipathy to government regulation, and skepticism toward elite overprotectiveness may come together – in the context of intersecting medical, economic, political, and epistemic crises – in a potent and potentially dangerous mix. (shrink)

This paper explores the potential and relevance of an innovative sociological research method known as the Imitation Game for research in health care. Whilst this method and its potential have until recently only been explored within sociology, there are many interesting and promising facets that may render this approach fruitful within the health care field, most notably to questions about the experiential knowledge or ‘expertise’ of chronically ill patients. The Imitation Game can be especially useful because it provides a way (...) to map this experiential knowledge more systematically, without falling in the dual trap of either over-relying on in-depth, but highly specific phenomenological ‘insider’-approaches that are hard to generalize, or, alternatively, problematically reducing the rich life-worlds of patients to a set of indicators in a questionnaire. The main focus of this paper is theoretical and conceptual: explaining the Imitation Game method, discussing its usefulness in the health care domain, and exploring the ways in which the approach can be utilized for chronic illness care. The paper presents both a conceptual and empirical exploration of how the Imitation Game method and its underlying theoretical concepts of ‘contributory expertise’ and ‘interactional expertise’ can be transferred from the sociological realm to the field of health care, what kinds of insights can be gained from the method, which methodological issues it may raise, and what potentially fruitful research routes can be explored. I argue that the Imitation Game can be thought of as a ‘social learning experiment’ that simultaneously enables the participants to learn from each other’s perspectives, allows researchers to explore exciting new possibilities, and also offers the tools to intervene in the practice that is being studied. (shrink)

Equipoise is an essential condition to justify a clinical trial. The term, describes a state of uncertainty: the data suggest but do not prove a drug's safety and efficacy The only way to resolve this uncertainty is further study In many cases, a clinical trial seems to be the most efficient way to prove safety and efficacy Equipoise is therefore not an esoteric philosophic construct applied to research ethics. Rather, since it is vital for the justification of clinical trials, it (...) is part of how society regulates medical progress. Where there is equipoise, drug design and development proceeds according to Food and Drug Administration and Health and Human Services regulations. When that equipoise ends, a drug is either not approved or becomes standard care. (shrink)

In developing an "internal" sociology of science, the sociology of scientific knowledge drew on Wittgenstein’s later philosophy to reinterpret traditional epistemological topics in sociological terms. By construing scientific reasoning as rule following within a collective, sociologists David Bloor and Harry Collins effectively blocked outside criticism of a scientific field, whether scientific, philosophical, or political. Ethnomethodologist Michael Lynch developed an alternative, Wittgensteinian reading that similarly blocked philosophical or political critique, while also disallowing analytical appeals to historical or institutional contexts. I criticize (...) these Wittgensteinian sociologies and argue for the historical and contemporary significance of methodological criticisms of scientific practice that conjoin epistemological and political categories. I consider two such cases briefly: the Baconian criticism of Scholastic science in the early Royal Society and the criticism of AIDS drug testing protocols by activists. Key Words: Wittgenstein • sociology of scientific knowledge • ethnomethodology • scientific method • interpretive sociology. (shrink)

This article explores some implications of the increasing reliance on clinical trials in contemporary health care, particularly health care payers’ efforts to use them in the so-called fourth hurdle decisions. How do these agencies manage medical uncertainty given the desire to produce clear guidelines for clinicians? Their solutions take account of trials in at least two ways, reflecting broader debates about the meaning of these medical experiments. Trials can be read as either ‘‘proofs of protocol’’—straightforward guides to action with individual (...) drugs in specific populations—or ‘‘proofs of principle’’— where extrapolation is made possible through an appeal to underlying biological mechanisms. These contrasting readings of trials are illustrated with reference to guidelines on heart disease prevention/cholesterol reduction using statins among the elderly in North America and the United Kingdom. Uncertainty in these cases does not lead to inertia but solutions use different fixed points to aid navigation, including both physiological principles and moral values. (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)

The article examines the process of niche standardization in medical research as an example of democratizing strategies implemented in industry-funded science. I argue that niche standardization can lead to undesirable epistemic and ethical consequences, if the various goals of research are not properly aligned. I examine two examples: the case of Sarafem, approved for the treatment of premenstrual dysphoric disorder in women, and the case of BiDil, approved for exclusive use in African Americans for the treatment of congestive heart failure. (...) I conclude by cautioning against the unqualified support of democratizing strategies in industry-funded research. (shrink)

ArgumentThe deficit model of science communication assumes that the creation and dissemination of knowledge is limited to researchers with formal credentials. Recent challenges to this model have emerged among “e-patients” who develop extensive online activist communities, demand access to their own health data, conduct crowd-sourced experiments, and “hack” health problems that traditional medical experts have failed to solve. This article explores the aesthetics of medical media that enact the transition from a deficit model to a patient-driven model of visual representation (...) and health communication. I present a framework for understanding the role of film and video in patient movements by analyzing the historical transition from researchers filming patients as nameless, voiceless human research subjects to patients recording their own health narratives through activist cinematography. By comparing several approaches to patient-centered video, I argue that imperfect production aesthetics play a critically important role in establishing the credibility of health communications. (shrink)