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)

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)

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)

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)

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)

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)

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)

The NeuroGenderings project is reminiscent of an interdisciplinary program called Critical Neuroscience. But the steps towards a feminist/queer Critical Neuroscience are complicated by the problematic ways in which critical neuroscientists conceive of their critical practices. They suggest that we work and talk across disciplines as if neuroscientists were from Mars and social scientists from Venus, assigning the latter to the traditional feminine role of assuaging conflict. This article argues that brain science studies scholars need to clarify how we want to (...) frame our critical practices—a critique of what and for whom?—and promote interdisciplinarity. The challenge is to articulate a critical stance that could not be collapsed into the all-encompassing claims of neuroscience, Critical Neuroscience included. I suggest we shift focus: from enhanced communication to the study of controversies (but also non-controversies, failed controversies, etc.) and conflicts. I explore the productiveness of this shift through two examples: the non-controversial notion of brain plasticity, and the controversial question of whether gender identity formation in intersex people is a function of their brain or their genitals. Socializing neuroscience with insights from gender and science studies is good; highlighting the conflicting dimensions of social life in the same gesture is even better. (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)

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)

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)

Citizen science projects have started to utilize Machine Learning to sort through large datasets generated in fields like astronomy, ecology and biodiversity, biology, and neuroimaging. Human–machine systems have been created to take advantage of the complementary strengths of humans and machines and have been optimized for efficiency and speed. We conducted qualitative content analysis on meta-summaries of documents reporting the results of 12 citizen science projects that used machine learning to optimize classification tasks. We examined the distribution of tasks between (...) citizen scientists, experts, and algorithms, and how epistemic agency was enacted in terms of whose knowledge shapes the distribution of tasks, who decides what knowledge is relevant to the classification, and who validates it. In our descriptive results, we found that experts, who include professional scientists and algorithm developers, are involved in every aspect of a project, from annotating or labelling data to giving data to algorithms to train them to make decisions from predictions. Experts also test and validate models to improve their accuracy by scoring their outputs when algorithms fail to make correct decisions. Experts are mostly the humans involved in a loop, but when algorithms encounter problems, citizens are also involved at several stages. In this paper, we present three main examples of citizens-in-the-loop: when algorithms provide incorrect suggestions; when algorithms fail to know how to perform classification; and when algorithms pose queries. We consider the implications of the emphasis on optimization on the ideal of science and the role of citizen scientists from a perspective informed by Science and Technology Studies and Information Systems. Based on our findings, we conclude that ML in CS classification projects, far from being deterministic in its nature and effects, may be open to question. There is no guarantee that these technologies can replace citizen scientists, nor any guarantee that they can provide citizens with opportunities for more interesting tasks. (shrink)

To anyone vaguely aware of Feyerabend, the title of this paper would appear as an oxymoron. For Feyerabend, it is often thought, science is an anarchic practice with no discernible structure. Against this trend, I elaborate the groundwork that Feyerabend has provided for the beginnings of an approach to organizing scientific research. Specifically, I argue that Feyerabend’s pluralism, once suitably modified, provides a plausible account of how to organize science. These modifications come from C.S. Peirce’s account of the economics of (...) theory pursuit, which has since been corroborated by empirical findings in the social sciences. I go on to contrast this approach with the conception of a ‘well-ordered science’ as outlined by Kitcher (Science, truth, and democracy, Oxford University Press, New York, 2001), Cartwright (Philos Sci 73(5):981–990, 2006), which rests on the assumption that we can predict the content of future research. I show how Feyerabend has already given us reasons to think that this model is much more limited than it is usually understood. I conclude by showing how models of resource allocation, specifically those of Kitcher (J Philos 87:5–22, 1990), Strevens (J Philos 100(2):55–79, 2003) and Weisberg and Muldoon (Philos Sci 76(2):225–252, 2009), unwittingly make use of this problematic assumption. I conclude by outlining a proposed model of resource allocation where funding is determined by lottery and briefly examining the extent to which it is compatible with the position defended in this paper. (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)

. 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.

Expectations play a distinctive role in shaping emerging technologies and producing hype cycles when a technology is adopted or fails on the market. To harness expectations, facilitate and provoke forward-looking discussions, and identify policy alternatives, futures studies are required. Here, expert anticipation of possible or probable future developments becomes extremely arbitrary beyond short-term prediction, and the results of futures studies are often controversial, divergent, or even contradictory; thus they are contested. Nevertheless, such socio-technical imaginaries may prescribe a future that seems (...) attainable to those involved in the visioneering process, and other futures may thus become less likely and shaping them could become more difficult. This implies a need to broaden the debate on socio-technological development, creating spaces where policy, science, and society can become mutually responsive to each other. Laypeople’s experiential and value-based knowledge is highly relevant for complementing expertise to inform socially robust decision-making in science and technology. This paper presents the evolution of a transdisciplinary, forward-looking co-creation process—a demand-side approach developed to strengthen needs-driven research and innovation governance by cross-linking knowledge of laypeople, experts, and stakeholders. Three case studies serve as examples. We argue that this approach can be considered a method for adding social robustness to visioneering and to responsible socio-technical change. (shrink)

The paper examines Pierre Bourdieu’s extensive writings on the production of scientific knowledge. The study shows that Bourdieu offered not one but two - significantly different - approaches to scientific knowledge production, one formulated in his theoretical, or programmatic, writings on the subject, the other developed in his empirical writings. Addressing the question as to the relevance of Bourdieu’s work for science studies, the analysis argues that the former of these two approaches is at once very visible in Bourdieu’s work (...) but characterized by limitations from the standpoint of scholarship in STS, whereas the latter approach is less conspicuous but of broader empirical value. (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)

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)

Brak transparentności procesów decyzyjnych typowy dla demokracji liberalnych oraz związany z nim kryzys zaufania obywateli wobec instytucji politycznych to jedne z głównych przyczyn sukcesów odnoszonych przez stronników demokracji nieliberalnej. Zdaniem krytyków liberalizmu zbyt wiele decyzji współcześnie delegowanych jest do ciał nienadzorowanych demokratycznie. Zwolennicy koncepcji demokracji deliberacyjnej formułują różne remedia na tę sytuację. Nie czynią tego jednak stronnicy najpopularniejszej obecnie z wersji demokracji deliberacyjnej – podejścia systemowego do deliberacji. Autor artykułu twierdzi, że podejście to może legitymizować „niedemokratyczny liberalizm” – jedną z (...) przyczyn kryzysu demokracji liberalnej. Celem artykułu jest prezentacja i ocena stosunku zwolenników podejścia systemowego do roli odgrywanej w procesie politycznym przez nienadzorowane demokratycznie gremia eksperckie. (shrink)

Civil society organizations (CSOs) have significantly impacted on the politics of health research and the field of bioethics. In the globalHIVepidemic,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 inHIVresearch. This study explored the perspectives ofCSOrepresentatives involved inHIVprevention trials (HPTs) on the impact of premature trial closures on stakeholder engagement. Fourteen respondents fromSouthAfrican and internationalCSOs representing activist and advocacy groups, community mobilisation initiatives, (...) and human and legal rights groups were purposively sampled based on involvement inHPTs. Interviews were conducted fromFebruary‐May 2010. Descriptive analysis was undertaken across interviews and key themes were developed inductively.CSOrepresentatives largely described positive outcomes of recent microbicide andHIVvaccine trial terminations, particularly inSouthAfrica, 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 toCABs as mechanisms for engagement. Key issues forCSOs in relation to research were also raised. (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)

Drawing on an analysis of complaint files that we conducted for the Irish Medical Council, this paper offers three possible explanations for the gap between the ubiquity of official commitments to taking patients’ complaints seriously and medical professional regulators’ dismissal—as not warranting an inquiry—of the vast majority of complaints submitted by members of the public. One explanation points to the “regulatory illiteracy” of many complainants, where the remit and threshold of seriousness of regulators is poorly understood by the general public. (...) Another points to possible processes of “institutional epistemic injustice” that unjustly undermine the credibility of certain complainants, such as those with low levels of formal education. A third explanation highlights the marginalization of the general public from “symbolic power” to define what matters in medical professional regulation. The paper is offered in a spirit of ideas in progress and raising questions rather than definitive insights into the regulatory process. (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)

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)

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)

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)

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)

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)

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)

The common “human in the loop” narrative in artificial intelligence (AI) implementation is in critical need of analysis and explanation, as Salloch and Eriksen (2024) rightfully argue. Researchers...

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.ZusammenfassungUm 1970 führte die hohe Zahl von Verkehrsunfällen unter Radfahrern zur Gründung zahlreicher lokaler Protestbewegungen in den Niederlanden. Obwohl die Aktivisten auch Proteststrategien einsetzten, besteht das Hauptinteresse dieses Artikels in der Art und Weise, wie sie ein äußerst erfolgreiches Beispiel für „Laienkompetenz“ darstellen. Die Idee dahinter ist, dass Nutzer eine wertvolle und grundlegend andere Perspektive auf eine Technologie haben als Experten oder Systembauer: Radfahrer gaben in Umfragen an, mehr über die Bedingungen und die Sicherheit von Fahrrädern zu wissen als die staatlich angestellten Ingenieure und Verkehrsexperten, die die Systeme des Straßen- und Radwegenetzes gebaut haben. Ein Hauptakteur dieser Geschichte ist der Fietsersbond [Radfahrerbund], eine nationale Plattform lokaler Aktionsgruppen, die 1975 gegründet wurde. Diese Aktivisten nutzten die Mobilitätserfahrung täglicher Radfahrer, um Karten und Liste von Orten zusammenzustellen, an denen das Radfahren gefährlich und unangenehm oder auf andere Weise beschwerlich war. Damit beanspruchten sie erfolgreich Legitimität als wertvoller Wissenspartner für lokale Ingenieure und politische Entscheidungsträger. Infolgedessen gewannen sie einen gewissen Einfluss auf die Kommunalverwaltung; eine Beziehung, die seitdem immer stärker geworden ist. Diese Fallstudie zeigt, wie Nutzer sozio-technische Systeme „von unten“ gestalten können; sie kann daher in gewissem Maße als erfolgreiches Beispiel für die kooperative Konstruktion von Technik angesehen werden. (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 article examines the cultural practices through which a group of professionals infuse their work and community with charisma. Although previous research has theorized the “charisma of office” (Weber 1978), we know little about how the occupants of such offices sustain it. I focus on a group of psychoanalytically-inclined psychotherapists, whose field, despite its early charismatic beginnings, has been especially embattled in recent decades. Drawing on ethnographic and interview data, I reveal how they share stories emphasizing their “idealization” by others, (...) draw boundaries between their professional and private lives to manage their work identities, and perform interpersonal affective work that shores up their claims to extraordinary abilities. Together, these cultural practices constitute charisma within the professional group. This article thus makes a case that, as expertise becomes increasingly contested, we must look beyond social organization and the evidentiary bases of knowledge to understand professional authority. (shrink)

In the context of more and more project-based research funding, commercialization and economic growth have increasingly become rationalized concepts that are used to demonstrate the centrality of science for societal development and prosperity. Following the world society tradition of organizational institutionalism, this paper probes the potential limits of the spread of such rationalized concepts among different types of research funders. Our comparative approach is particularly designed to study the role and position of nonprofit research funders, a comparison that is relevant (...) as NPF could potentially be shielded from such rationalized pressures given their lack of profit gaining motives. By making a qualitative interview-based investigation we are able to describe how research funders rationalize their contributions to society at large, as well as their obligations to the researchers they fund. Four types of research funders are compared—independently wealthy philanthropists, fundraising dependent nonprofits, public agencies, and industry. We find that NPF, and especially philanthropists, are the least commercially geared type of funder, but that philanthropists also express least obligations to researchers funded. This is in sharp contrast to public research funders who, even more than industry, employ commercially geared rationalizations. We also find that both public and corporate funders express obligations to the researchers they fund. Our results indicate that there are limits to the spread of commercially tinted rationalizations among NPF, but that this does not necessarily mean an increased sense of obligations to the researchers funded, and by extension to the integrity of scientific pursuit. (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)

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)

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of their place (...) in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future. (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 article draws attention to the production and circulation of genetic knowledge among three constituencies—laboratory researchers, clinicians, and health advocates— all of whom have a stake in research on a heritable connective tissue condition known as Marfan syndrome. National and international conferences provide a context that brings members of these groups together. Such meetings are performance settings, which include the display of visual images depicting various aspects of Marfan syndrome and of the bodies and lived experience of those who have (...) it. The article examines how these images are interpreted, appropriated, and exchanged and how their circulation is both grounded in local knowledge and the grounds for transformative translocal practice. (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)

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)

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)