Science, Technology, & Human Values
Participation in Citizen Science: Insights from the CONECT-e Case Study
Petra Benyei, Manuel Pardo-de-Santayana, Laura Aceituno-Mata, Laura Calvet-Mir, María Carrascosa-García, Marta Rivera-Ferre, Antonio Perdomo-Molina, Victoria Reyes-García
Citizen science (CS) is growing quickly, given its potential to enhance knowledge coproduction by diverse participants, generating large and global data sets. However, uneven participation in CS is still an important concern. This work aims to understand (1) participation dynamics in CS and (2) how they are shaped by participation barriers and drivers. We do so by examining participation in CONECT-e, a CS project that uses a wiki-like platform to document traditional ecological knowledge. More precisely, we analyze quantitative data on participants’ profile and activity patterns and qualitative data on barriers and drivers of participation. Our findings suggest that overcoming the education, age, and residence participation barriers is challenging even in cocreated CS projects. This is potentially due to issues of perceived self-illegitimacy and low access to information and communication technologies. Our results also point out that participants’ alliance with the project’s objectives and trust relationships with the project team are important drivers of participation in CS projects. Finally, we also highlight the need to think beyond participation as single actions and rather consider participation diversity in CS as functional diversity in ecosystems, with participants performing a diverse set of interconnected tasks or functions.
Moving Evidence: Patients’ Groups, Biomedical Research, and Affects (open access)
Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven through these practices and pays attention to the entanglements of affects, biomedical research, and lay experience they involve. The article explores the relation between the gynecological cancer patients’ group and biomedical research as a set of material-semiotic practices of “moving evidence.” These practices of moving evidence (1) enact gynecological cancer as under-researched; (2) collect and produce new “evidence”; (3) “mobilize” the evidence at public events, in interactions with biomedical researchers, and in different online settings; and (4) entangle affects with biomedical and experiential evidence to enact (a lack of) gynecological cancer biomedical research as a matter of concern.
Increasing Engagement in Regulatory Science: Reflections from the Field of Risk Assessment (open access)
Leonie Dendler, Gaby-Fleur Böl
While the demands for greater engagement in science in general and regulatory science in particular have been steadily increasing, we still face limited understanding of the empirical resonance of these demands. Against this context, this paper presents findings from a recent study of a potential participatory opening of the German Federal Institute for Risk Assessment (“Bundesinstitut für Riskobewertung” [BfR]), a prominent regulatory scientific organization in the field of risk governance. Drawing upon quantitative surveys of the public and selected professional experts as well as in-depth qualitative expert interviews, we identify a general support for greater engagement in science-based risk assessment. However, we also find significant contestation concerning its potential enactment and its normative and strategic merit. Underlying these contestations, we identify the persistence of a normal view of science and decisionist understanding of risk assessment, which create conflicting legitimacy demands for BfR and other regulatory scientific organizations. Together with concerns about imbalances in the power to participate, especially in highly specialized engagement processes, these pose significant challenges for the institutionalization of more participatory practices.
Sea Change: The World Ocean Circulation Experiment and the Productive Limits of Ocean Variability (open access)
The ability to quantify the relationship between the ocean and the atmosphere is an enduring challenge for global-scale science. This paper analyzes the World Ocean Circulation Experiment (WOCE, 1990–2002), an international oceanographic program that aimed to provide data for decadal-scale climate modeling and for the first time produce a “snapshot” of ocean circulation against which future change could be measured. WOCE was an ambitious project that drew on extensive international collaboration and emerging technologies that continue to play a significant role in how the global environment is known and governed. However, a main outcome of WOCE was an encounter with ocean variability: the notion that the ocean is governed not by the circular currents shown in the popular “conveyor-belt” diagram but by eddies, filaments, jets, and other nonlinear forces. This paper suggests the concept of “productive limits” as an analytic for understanding how ocean variability both prompted new forms of knowledge and the development of a global knowledge infrastructure that is contingent, uneven, and fully entwined with geopolitical dynamics.
Tempering hope with Intimate Knowledge: Contrasting Emergences of the Concept ‘Uninfectious’ in HIV (open access)
Peter Keogh, Catherine Dodds
In this paper, we contrast two emergences of the concept of ‘uninfectious’ (that pharmaceuticals can render someone living with HIV non-infectious) in HIV. First, using Novas’ framing of ‘political economies of hope’, we describe the deployment of ‘uninfectious’ as part of global health campaigns. Second, we draw on Raffles’ (International Social Science Journal, 2002, 54, 325) concept of ‘intimate knowledge’ to theorise our own account of ‘uninfectious’ through a re-analysis of qualitative data comprising the intimate experiences of people living with or around HIV collected at various points over the last 25 years. Framed as intimate knowledge, ‘uninfectious’ becomes known through people’s multiple engagements with and developing understandings of HIV over a prolonged period. As contingent and specific, intimate knowledge does not register within the biomedical/scientific ontological system that underpins discourses of hope employed in global campaigns. The concept of intimate knowledge offers the potential to critique discourses of hope in biomedicine problematising claims to universality whilst enriching biomedical understandings with accounts of affective, embodied experience. Intimate knowledge may also provide a bridge between different epistemological traditions in the sociology of health and illness.
Off the Record: The Invisibility Work of Doctors in a Patient-Accessible Electronic Health Record Information Service (open access)
Jesper Petersson, Christel Backman
In this article, we draw on Michael Lipsky’s work on street-level bureaucrats and discretion to analyse a real case setting comprising an interview study of 30 Swedish doctors regarding their experiences of changes in clinical work following patients being given access to medical records information online. We introduce the notion of invisibilitywork to capture how doctors exercise discretion to preserve the invisibility of their work, in contrast to the well-established notion of invisible work, which denotes work made invisible by parties other than those performing it. We discuss three main forms of invisibility work in relation to records: omitting information, cryptic writing and parallel note writing. We argue that invisibility work is a way for doctors to resolve professional tensions arising from the political decision to provide patients with online access to record information. Although invisibility work is understood by doctors as a solution to government-initiated visibility, we highlight how it can create difficulties for doctors concerning accountability towards patients, peers and authorities.
Situating Adherence to Medicines: The Embodied Practices and Hinterlands of HIV Antiretrovirals (open access)
Emily Jay Nicholls, Tim Rhodes, Siri Jonina Egede
Adherence to medicines tends to be envisaged as a matter of actors’ reasoned actions, though there is increasing emphasis on situating adherence as a practice materialised in everyday routines. Drawing on the qualitative interview accounts of Black African women living with HIV in London, UK, we treat adherence to HIV medicines as not only situated in the practices of the immediate and everyday but also relating to a hinterland of historical and social relations. We move from accounts which situate adherence as an embodied matter of affect in the present, to accounts which locate adherence as a condition of precarity, which also trace to enactments of time and place in the past. Adherence is therefore envisaged as a multiple and fluid effect which is made-up in-the-now and in relation to a hinterland of practices which locate elsewhere.
Diagnostic Slippage: Medical Uncertainty and Engaged Patienthood in the Case of Atypical Disorders
This study explores how patients affected by depersonalization/derealization disorder confront clinical uncertainty by investing in their own diagnosis and prognosis. While depersonalization/derealization has been a legitimate medical category within psychiatric nomenclature for decades, those affected by this condition have traditionally embarked on a diagnostic odyssey. As a rare disorder, clinicians have repeatedly misdiagnosed depersonalization/derealization as a byproduct of illnesses such as anxiety disorder, depression, or schizophrenia. Drawing from in-depth interviews, as well the analysis of videos and online posts, I explore the trajectory through which patients affected by depersonalization/derealization, dissatisfied with traditional diagnostic routes, have transformed the process of diagnostic revelation from a clinical prerogative to a lay accomplishment. This study indicates that a multifaceted process, consisting of a dialectical relation between the material reality of information democratization and a heightening cultural orientation towards engaged patienthood, may shorten diagnostic odysseys for people affected by atypical disorders and undermine physicians’ authority to diagnose.
Is There Evidence for the Racialization of Pharmaceutical Regulation? Systematic Comparison of New Drugs Approved Over Five Years in the USA and the EU (open access)
Shai Mulinari, Andreas Vilhelmsson, Piotr Ozieranski, Anna Bredström
Recent decades have seen much interest in racial and ethnic differences in drug response. The most emblematic example is the heart drug BiDil, approved by the US Food and Drug Administration in 2005 for “self-identified blacks.” Previous social science research has explored this “racialization of pharmaceutical regulation” in the USA, and discussed its implications for the “pharmaceuticalization of race” in terms of reinforcing certain taxonomic schemes and conceptualizations. Yet, little is known about the racialization of pharmaceutical regulation in the USA after BiDil, and how it compares with the situation in the EU, where political and regulatory commitment to race and ethnicity in pharmaceutical medicine is weak. We have addressed these gaps by investigating 397 product labels of all novel drugs approved in the USA (n = 213) and the EU (n = 184) between 2014 and 2018. Our analysis considered statements in labeling and the racial/ethnic categories used. Overall, it revealed that many labels report race/ethnicity demographics and subgroup analyses, but that there are important differences between the USA and the EU. Significantly more US labels specified race/ethnicity demographics, as expected given the USA’s greater commitment to race and ethnicity in pharmaceutical medicine. Moreover, we found evidence that reporting of race/ethnicity demographics in EU labels was driven, in part, by statements in US labels, suggesting the spillover of US regulatory standards to the EU. Unexpectedly, significantly more EU labels reported differences in drug response, although no drug was restricted to a racial/ethnic population in a manner similar to BiDil. Our analysis also noted variability and inconsistency in the racial/ethnic taxonomy used in labels. We discuss implications for the racialization of pharmaceutical regulation and the pharmaceuticalization of race in the USA and EU.
We’ve Got What the NHS Ultimately Intended for Us: Experiences of Community Engagement in Rural Primary Care Services Change
Sarah-Anne Munoz, Sara Bradley
Policy promotes service user engagement in health services design and delivery. Various tools exist to support the engagement of citizens within health services design. We consider community engagement within the context of primary care delivery in remote and rural areas of Scotland. We present findings from three years of qualitative work with community members and healthcare professionals within five different remote and rural areas, undergoing primary care service changes. 364 interviews were carried out with community members and healthcare professionals on their experiences of, and feelings towards, the services changes. A key theme to emerge from our thematic analysis of the qualitative data is experiences of community engagement. In this paper we present our analysis of this theme. We identify different types of community engagement discourse within community and healthcare professional interviews. We illustrate these themes and, through consideration of five case study areas, demonstrate how these discourses can co-exist within the same service change process. The paper presents our sub-themes on community engagement relating to discourses of inclusion and exclusion; the role of the General Practitioner (GP); conceptualisations of the organisational role of the NHS; discourses of fear and, finally, community members understandings of what it means to be active “agents of change” (or not) within health services redesign. We argue that context is as important as method when it comes to facilitating a positive community engagement experience for citizens. Our findings have relevance to the emerging social science literature on citizen experience of public sector community engagement activities.
Valuing Patient Engagement: Reflexive Learning in Evidence Generation Practices for Health Technology Assessment (open access)
Callum J. Gunn, Neil Bertelsen, Barbara J. Regeer, Tjerk Jan Schuitmaker-Warnaar
Much attention in health technology assessment (HTA), a health system governance mechanism used for determining the value of health technologies, is being paid to improving the quality and patient-relevance of the evidence used in assessment pratices. Whilst the direct involvement of patient actors throughout HTA processes has become a more routine element of institutional practice, the ‘impacts’ of patient engagement (PE) initiatives have proven difficult to determine and enhance. In reflexive governance theories, reflexive learning is a critical mechanism of multi-stakeholder arrangements that better handles the complexities of technologies and how they are understood through governance practices. This paper explores how reflexive learning can be used to build a richer conceptualisation of PE in HTA, in order to generate suggestions for enhancing PE practices and their impact. We critically apply reflexive learning insights on qualitative data derived from the co-creation process of a PE evaluation framework, organised through an EU project focused on strengthening PE practices across medicines development (2018–2020), including 24 interactive case studies, 3 multi-stakeholder workshops, and our observations throughout the project. The findings characterise two dimensions of reflexive learning in PE: First, reflexive learning refers to the adaptive reorganisation of evidence generating practices, including the revision of medicines’ evaluation criteria and the conditions under which evidence ‘relevant’ to HTA is constructed. Second, reflexive learning spotlights the sociopolitics which shape technology evaluation. Four themes affecting meaningful and sustained PE in medicines development were analysed: institutional boundaries due to established evaluation criteria; timing of engagements; network relations between institutional actors; and the politics of patient representation. Extending beyond discrete PE activities and their reported impacts, reflexive forms of learning are crucial to yielding more ‘meaningful’ PE for HTA and medicines development, facilitating a HTA practice that more meaningfully deals with the complexities of medicines evidence generation.
“If a Rabbi Did Say ‘You Have to Vaccinate,’ We Wouldn’t”: Unveiling the Secular Logics of Religious Exemption and Opposition to Vaccination
Maintaining ‘faith’ in vaccination has emerged as a public health challenge amidst outbreaks of preventable disease among religious minorities and rising claims to ‘exemption’ from vaccine mandates. Outbreaks of measlesand coronavirus have been particularly acute among Orthodox Jewish neighbourhoods in North America, Europe and Israel, yet no comparative studies have been conducted to discern the shared and situated influences on vaccine decision-making.
This paper synthesises qualitative research into vaccine decision-making among Orthodox Jews in the United Kingdom and Israel during the 2014–15 and 2018-19 measles epidemics, and 2020–21 coronavirus pandemic. The methods integrate 66 semi-structured informal interviews conducted with parents, formal and informal healthcare practitioners, and religious leaders, as well as analysis of tailored non-vaccination advocacy events and literature.
The paper argues that the discourse of ‘religious’ exemption and opposition to vaccination obscures the diverse practices and philosophies that inform vaccine decisions, and how religious law and leaders form a contingent influence. Rather than viewing religion as the primary framework through which vaccine decisions are made, Orthodox Jewish parents were more concerned with safety, trust and choice in similar ways to ‘secular’ logics of non-vaccination. Yet, religious frameworks were mobilised, and at times politicised, to suit medico-legal discourse of ‘exemption’ from coercive or mandatory vaccine policies. By conceptualising tensions around protection as ‘political immunities,’ the paper offers a model to inform social science understandings of how health, law and religion intersect in contemporary vaccine opposition.
Political Frames of Public Health Crises: Discussing the Opioid Epidemic in the US Congress
Max Weiss, Michael Zoorob
When and how do politicians talk about public health crises? Using evidence from the opioid crisis in the United States, this paper assembles and analyzes novel data on Congressional statements to explore the conditions under which politicians (1) issue public statements about opioids and (2) frame the opioid crisis as a predominantly public health or law enforcement problem. We examined 3.8 million Congressional floor speeches and 111,000 public statements to identify (1) floor speeches about drug crises in the 97th to 114th Congresses (1981–2017) and (2) public statements about the opioid crisis in the 116th Congress (2019–2020). Moderate ideology, women, greater overdose deaths, and larger white populations are associated with significantly higher frequencies of opioid statements. Using a dictionary-based text analysis approach, we find that ideologically liberal and African American legislators are more likely to use public health framing, while ideologically conservative members are more likely to use law enforcement framing and refer to national borders or foreign countries in opioid statements. Democrats/liberals more often referenced medication treatment for opioids. These findings imply two broader conclusions about the nature of political discourse in public health crises. First, that political extremists are least likely to talk about opioids suggests that increasing partisan polarization may result in less discussion, emphasis, and expertise in public health issues. Second, the tenor of discourse about opioids and other public health crises is likely to change with partisan electoral waves, potentially hindering long term planning of public health capacity.
Do Standard Classifications Still Represent European Welfare Typologies? Novel Evidence from Studies on Health and Social Care (open access)
Giovanni Bertin, Ludovico Carrino, Marta Pantalone
Due to the profound changes that have characterised welfare systems, the representativeness of standard welfare classifications such as Esping-Andersen’s Three Worlds of Welfare (TWW) have been questioned. In response to concerns that welfare services do not share a common rationale across policy areas, new typologies focused on sub-areas of welfare provision have been introduced. Still, there is little evidence on whether such policy-specific typologies are (i) consistent with the standard TWW classifications; and (ii) consistent across policy areas.
We reviewed 22 recent studies which identified welfare typologies in 12 European countries focusing on economically relevant areas such as healthcare and social care. We build novel indices of “welfare similarity” to measure the extent to which welfare systems have been grouped together in previous studies. Our findings are twofold: first, healthcare and social care policies are characterised by the coexistence and overlap of multiple regimes, i.e., a hybridisation of the original TWW taxonomy. Second, countries classifications are substantially different between healthcare and social care, which highlights the lack of coherence in welfare systems rationales across policy areas. Our findings suggest that comparative analyses of welfare systems should narrow their focus on policy-specific areas, which may prove more informative than general classifications of welfare states.
The Politics of COVID-19 Vaccination in Middle-Income Countries: Lessons from Brazil
Elize Massard da Fonseca, Kenneth C. Shadlen, Francisco I. Bastos
As the world struggles to meet the challenges of vaccination against COVID-19, more attention needs to be paid to issues faced by countries at different income levels. Middle-income countries (MICs) typically lack the resources and regulatory capacities to pursue strategies that wealthier countries do, but they also face different sets of challenges and opportunities than low-income countries (LICs). We focus on three dimensions of vaccination: procurement and production; regulation of marketing registration; and distribution and uptake. For each dimension we show the distinct challenges and opportunities faced by MICs. We illustrate these challenges and opportunities with the case of Brazil, showing how each dimension has been affected by intense political conflicts. Brazil’s procurement and production strategy, which builds on a long trajectory of local production and technology transfer, has been riddled by conflicts between the national government and state governments. The regulatory approval process, based around one of Latin America’s most highly-regarded regulatory authorities, has also been subject to acute inter- and intra-governmental conflicts. And with regard to distribution and uptake, in the face of high uncertainty, even with a solid health infrastructure, Brazil encounters difficulties in promoting vaccine delivery. The research also reveals the importance of coordination among these dimensions, in Brazil and beyond. Pandemic preparedness and response must include sharing knowledge of how to produce vaccines and recognition of the crucial linkages between procurement, regulation, delivery, and uptake that are necessary for ensuring access to these products.
Relational Health: Theorizing Plants as Health-Supporting Actors
‘Plant blindness’ stops people from recognizing the important role that plants play in society, and is acute when it comes to seeing how plants support health. The social sciences are beginning to explore how plants are imbricated in sociopolitical processes, including ones that produce health. This paper theorizes people-plant relations and the agency of plants in the production of health, drawing on data from a multispecies ethnographyconducted in Toronto’s largest social housing community during the 2018 growing season. The paper applies a posthumanist lens to find that food-producing plants in the area exert their agency and are health-supporting actors when collaborating with residents to advocate for community gardens and influence neighbourhood design. By arguing that plants are actual agents of change in sociopolitical processes, the article deepens an understanding of the health-supporting role of plants and provides empirical evidence for a view of health as a process, as opposed to a status, that is produced through relationships. The paper suggests that the term ‘relational health’ be used to describe a conception of health that recognizes that health is produced through interconnections and interdependencies, including between people and plants. The article contributes to discourses exploring the human health relationship to nature, including One Health.
Science, Technology, and Society
Technology Evolution and Multiplier Innovation Through TDNA Analytical Model (open access)
Junghee Han, Sunghoon Chung, Heeyoung Jang
Few papers have dealt with disruptive technology from a technological evolutionary perspective. This article analyses disruptive innovation activities in terms of the new concept of technological DNA (TDNA). To pursue the research aim, evolution theories and a case methodology were utilised. We find that evolutions in technology are due to changes in environmental conditions. Parallels may be drawn between technology discontinuity and the punctuated equilibrium theory in evolution. When seen from that perspective, TDNA has not been disrupted but has evolved within the new market environment, and technological evolution gives birth to a new industry. New products or services are created through the changing or reconfiguring of TDNA. Over time, technology evolves, but its inherent nature remains. For that reason, TDNA is not disrupted even if disruptive innovation occurs. Rather, through the process of disruptive innovation, new functions are created by the substitution or replacement of the architecture surrounding the technology which determines how it actually functions. Thus we may refer to this phenomenon as a ‘Multiplier innovation’ rather than a disruptive innovation in that it involves the birthing of new products. This article seeks to contribute to innovation studies in expanding its methodological framework.
Grasping the Body: Physicians, Tailors, and Holy People
This article argues for the importance of material practices and the agency of objects in forming and validating knowledge in early modern Britain. They played a crucial role in the development of technological and scientific culture, as part of a process of appropriation of knowledge, skills, and methods from artisans. Despite this importance, they have so far been largely overlooked. Moreover, this article demonstrates how the belief that “scientific” observations could be communicated reliably and certified through specific objects was rooted in religious and mythicized practices. It discusses the mid-seventeenth-century case of the provincial physician William Durston. To prove his knowledge was reliable, he submitted the tapes used to measure his patients together with witness accounts to the Royal Society in London. This article adds to current debates around Useful and Reliable Knowledge in Europe and shows how different kinds of knowledge and actors shaped the Western path to “modernity.”
The Codification of Techniques: Between Bureaucracy and the Markets in Early Modern Europe from a Global Perspective
The term “technology” has routinely been used to mean the application of science to industry. By contrast, “artisanal technology” questions the current epistemological status of practices as sources of abstraction and the synthetic activities of the mind. This article shows the connections between bureaucracy and the codification of useful knowledge—or technique—across Europe, in various channels of knowledge transmission, before focusing on British artisanal records. Artisan-entrepreneurs, facing expanding markets and differentiated demands, were arguably crucial to the birth of new rationalities of labor. Theirs was a path to technological knowledge rooted in the merchant economy, an alternative to technocracy and the rise of engineering sciences. The article thus shows that “technology” as an abstraction of technical activity belonged to the craft culture.
Useful & Reliable: Technological Transformation in Colonial India
The proposition that Useful and Reliable Knowledge (URK) produced divergent patterns of long-term economic growth implies that such knowledge had weak agency in countries that fell behind. This article rejects such a theory on the evidence of colonial India. Indo-European contacts activated transfer, transplantation, and adaptation in URK; however, the impact was uneven within India. Despite boosting productivity in manufacturing and consumption, large areas were left untouched. These contrasts highlight the differentiated impact of URK on production conditions in India and question its transferability and mode of knowledge exchange under colonialism.