Der Begriff »Solidarität« erlebt gegenwärtig eine Renaissance: In Zeiten ökonomischer Krisen scheint eine Rückbesinnung auf solidarische Werte auch in der Gesundheitsversorgung angebracht. Anknüpfend an die internationale Bio- und Medizinethikdebatte entwickeln die Autorinnen ein neues Solidaritätsverständnis: Anstatt den Begriff nur auf der abstrakten Ebene zu behandeln, zeigen sie anhand konkreter Fallbeispiele, etwa der Schweinegrippe-Pandemie von 2009/10 oder lebensstilbedingten Krankheiten, wie ethische Regelwerke und regulatorische Instrumente aus dem Blickwinkel der Solidarität verändert und verbessert werden können.

In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.

In recent years, critical scholarship has drawn attention to increasing power differentials between corporations that use data and people whose data is used. A growing number of scholars see digital data and information commons as a way to counteract this asymmetry. In this paper I raise two concerns with this argument: First, because digital data and information can be in more than one place at once, governance models for physical common-pool resources cannot be easily transposed to digital commons. Second, not (...) all data and information commons are suitable to address power differentials. In order to create digital commons that effectively address power asymmetries we must pay more systematic attention to the issue of exclusion from digital data and information commons. Why and how digital data and information commons exclude, and what the consequences of such exclusion are, decide whether commons can change power asymmetries or whether they are more likely to perpetuate them. (shrink)

This paper, which is based on an extensive analysis of the literature, gives a brief overview of the main ways in which solidarity has been employed in bioethical writings in the last two decades. As the vagueness of the term has been one of the main targets of critique, we propose a new approach to defining solidarity, identifying it primarily as a practice enacted at the interpersonal, communal, and contractual/legal levels. Our three-tier model of solidarity can also help to explain (...) the way in which crises of solidarity can occur, notably when formal solidaristic arrangements continue to exist despite ‘lower tiers’ of solidarity practices at inter-personal and communal levels having ‘broken away’. We hope that this contribution to the growing debate on the potential for the value of solidarity to help tackle issues in bioethics and beyond, will stimulate further discussion involving both conceptual and empirically informed perspectives. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

In today’s digital societies, it has become very difficult for people to exercise meaningful control over what and how data is collected and used. McCoy and colleagues (2023) seek to address this p...

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 17 Heft: 1 Seiten: 331-344.

Designing the future of work is crucial to the health and well‐being of people and societies. Experts predict that developments such as the advancement of digital technologies, automation, and the movement of manufacturing jobs to low‐wage countries will lead to major transformations in the labour market, and some foresee significant job losses. Due to the close relationship between employment and health, major job losses would have significant negative impacts on the health and well‐being of individuals and societies. Job losses would (...) also pose a major challenge to solidaristic support within societies because they would negatively affect the recognition of similarities among people, which is vital for solidaristic practice and institutions. To prevent these negative effects, a fundamental redesign of the relationship between work and income is necessary. And for this project to succeed, we need to reconsider of the value of work. Building on definitions of flourishing people and societies, we argue that the value of work should not be determined by the labour market, but according to its importance for society. Using a solidarity‐based framework we argue that such a re‐valuation of work will help to ensure social cohesion and increase reciprocity in our societies. It will serve as a foundation upon which we can reconfigure the relationship between work and income without risking the loss of social cohesion and solidarity. (shrink)

In 2005, seven European countries signed the so-called Prüm Treaty to increase transnational collaboration in combating international crime, terrorism and illegal immigration. Three years later, the Treaty was adopted into EU law. EU member countries were now obliged to have systems in place to allow authorities of other member states access to nationally held data on DNA, fingerprints, and vehicles by August 2011. In this paper, we discuss the conditions of possibility for the Prüm network to emerge, and argue that (...) rather than a linear ascent towards technological and political convergence and harmonisation, the story of Prüm is heterogeneous and halting. This is reflected also in the early stages of implementing the Prüm Decision which has proven to be more challenging than it was hoped by the drivers of the Prüm process. In this sense, the Prüm network sits uncomfortably with success stories of forensic science . Instead of telling a story of heroic science, the story of Prüm articulates the European dream: one in which goods, services, and people live and travel freely and securely. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

Universities in North America and Europe increasingly provide financial incentives to encourage collaboration between faculty in different disciplines, based on the premise that this yields more innovative and sophisticated research. Drawing from a wealth of empirical data, the contributors to Investigating Interdisciplinary Collaboration put that theory to the test. What they find reveals how interdisciplinarity is not living up to its potential, but also suggests how universities might foster more genuinely collaborative and productive research. Chapter 10 is available Open Access (...) here: https: //www.ncbi.nlm.nih.gov/books/NBK395883/. (shrink)

In this paper we explore shifts in how the law and ethics allow European law enforcement officers to use forensic genetic technologies. We do so by reviewing three technologies, ‘traditional’ (STR-based) forensic DNA profiling, forensic DNA phenotyping and the searching of genetic genealogy databases. In particular, we discuss changes in how ethical boundaries have been placed around what is seen as an appropriate use of genetic technologies in European criminal justice systems. While the ‘type’ of DNA that law enforcement officers (...) are permitted to analyse offers a useful ethical reference point, for newer forensic genomic technologies, ethical scrutiny, we argue, would also look at the specific purpose or use of the technology. (shrink)

Many countries currently invest in technologies and data infrastructures to foster precision medicine (PM), which is hoped to better tailor disease treatment and prevention to individual patients. But who can expect to benefit from PM? The answer depends not only on scientific developments but also on the willingness to address the problem of structural injustice. One important step is to confront the problem of underrepresentation of certain populations in PM cohorts via improved research inclusivity. Yet, we argue that the perspective (...) needs to be broadened because the (in)equitable effects of PM are also strongly contingent on wider structural factors and prioritization of healthcare strategies and resources. When (and before) implementing PM, it is crucial to attend to how the organisation of healthcare systems influences who will benefit, as well as whether PM may present challenges for a solidaristic sharing of costs and risks. We discuss these issues through a comparative lens of healthcare models and PM-initiatives in the United States, Austria, and Denmark. The analysis draws attention to how PM hinges on—and simultaneously affects—access to healthcare services, public trust in data handling, and prioritization of healthcare resources. Finally, we provide suggestions for how to mitigate foreseeable negative effects. (shrink)

The concept of lifestyle-related diseases and individual responsibility for health has played an important role in debates on the fair allocation of increasingly scarce health-care resources. In this article, we examine this discussion through the prism of solidarity. Based on an understanding of solidarity as shared practices reflecting a collective commitment to carry ‘costs’ (financial, social, emotional or otherwise) to assist others, we analyse frequent arguments in the debate and, in particular, the tool of risk-stratification. We then offer a solidarity-based (...) approach to understanding risk in the context of lifestyle-related diseases, and draw a number of conclusions on how health policy informed by solidarity should approach priority setting in health care. (shrink)

James F. Drane: A Liberal Catholic Bioethics. Muenster, DE: Lit Verlag. 2010, 290 Pages Content Type Journal Article Category Book Review Pages 771-774 DOI 10.1007/s11406-011-9319-4 Authors Andrew Papanikitas, Department of Education and Professional Studies, King’s College London, Strand Campus, London, WC2R 2LS UK Barbara Prainsack, Kings Institute of Social Science and Public Policy, King’s College London, Strand Campus, London, WC2R 2LS UK Journal Philosophia Online ISSN 1574-9274 Print ISSN 0048-3893 Journal Volume Volume 39 Journal Issue Volume 39, Number (...) 4. (shrink)

Forensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person’s observable characteristics (“phenotype”) from DNA. The aim is to aid criminal investigations by helping to identify unknown suspected perpetrators, or to help with non-criminal missing persons cases. Here we provide results from the analysis of 36 interviews with those who have a professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social scientists. Located in eight EU countries, these individuals (...) were asked for their views on the benefits and problems associated with the prospective use of FDP. While all interviewees distinguished between those phenotypic tests perceived to either raise ethical, social or political concerns from those tests viewed as less ethically and socially problematic, there was wide variation regarding the criteria they used to make this distinction. We discuss the implications of this in terms of responsible technology development. (shrink)

Elias G. Carayannis and David F. J. Campbell, Mode 3 Knowledge Production in Quadruple Helix Innovation Systems: 21st-Century Democracy, Innovation, and Entrepreneurship for Development Content Type Journal Article Category Book Review Pages 139-142 DOI 10.1007/s11024-012-9194-6 Authors Barbara Prainsack, Department of Sociology and Communications, Brunel University, Kingston Lane, Uxbridge, Middlesex UB8 3PH, UK Journal Minerva Online ISSN 1573-1871 Print ISSN 0026-4695 Journal Volume Volume 50 Journal Issue Volume 50, Number 1.

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

Mobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number of questions that should be addressed when assessing the ethical challenges of mobile applications for digital contact-tracing of COVID-19: Which safeguards should be designed in the technology? Who should access data? What is a legitimate role for “Big Tech” companies in the development and implementation of these systems? How should cultural and behavioural issues be (...) accounted for in the design of these apps? Should use of these apps be compulsory? What does transparency and ethical oversight mean in this context? We demonstrate that responses to these questions are complex and contingent and argue that if digital contract-tracing is used, then it should be clear that this is on a trial basis and its use should be subject to independent monitoring and evaluation. (shrink)

Research, innovation, and progress in the life sciences are increasingly contingent on access to large quantities of data. This is one of the key premises behind the “open science” movement and the global calls for fostering the sharing of personal data, datasets, and research results. This paper reports on the outcomes of discussions by the panel “Open science, data sharing and solidarity: who benefits?” held at the 2021 Biennial conference of the International Society for the History, Philosophy, and Social Studies (...) of Biology, and hosted by Cold Spring Harbor Laboratory. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware (...) that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production. (shrink)

This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of (...) data. We then consider how these justifications translate to digital epidemiology, understood as an evolution of traditional epidemiology that includes personal and proprietary digital data alongside formal medical datasets. We consider the risks imposed by re-purposing such data for digital epidemiology and propose eight justificatory conditions that should be met in justifying a duty to participate for specific digital epidemiological studies. The conditions are then applied to three hypothetical cases involving usage of social media data for epidemiological purposes. We conclude with a list of questions to be considered in public negotiations of digital epidemiology, including the application of a duty to participate to third-party data controllers, and the important distinction between moral and legal obligations to participate in research. (shrink)

Throughout the COVID-19 pandemic, the concept of solidarity has been invoked frequently. Much interest has centred around how citizens and communities support one another during times of uncertainty. Yet, empirical research which accounts and understands citizen’s views on pandemic solidarity, or their actual practices has remained limited. Drawing upon the analysis of data from 35 qualitative interviews, this article investigates how residents in England and Scotland enacted, understood, or criticised (the lack of) solidarity during the first national lockdown in the (...) United Kingdom in April 2020—at a time when media celebrated solidarity as being at an all-time high. It finds that although solidarity was practiced by some people, the perceived lack of solidarity was just as pronounced. We conclude that despite frequent mobilisations of solidarity by policy makers and other public actors, actual practices of solidarity are poorly understood—despite the importance of solidarity for public health and policy. (shrink)

In her article “The ‘We’ in the Me: Solidarity in the Era of Personalized Medicine,” Barbara Prainsack develops an earlier interest in the relationship between solidarity and autonomy and the way that these notions operate once passed through the lens of bioethical thought and practice. In his response to this article, Simpson introduces the perspective of two South Asian physicians on these issues. The piece highlights issues of personhood upon which the informed consent transaction is based and draws (...) attention to the culturally specific versions of how people conceive of relationality, duty, care, and the obligations they feel they owe to others. The piece highlights the pronomial shifts between the “we” and the “me” and the way that these dispositions emerge in sociopolitically configured spaces. By paying careful attention to the settings and situations in which the movements between different positions actually take place, the ways in which the fabric of ethical life is made rather than simply given is revealed. Ethnographic inquiry is seen as crucial in understanding this process because it points to disjunctions between the categories that we are provided to apprehend the world and what it is actually like to live in that world. (shrink)

How does thinking affect doing? There is a widely held view that thinking about what you are doing, as you are doing it, hinders performance. Once you have acquired the ability to putt a golf ball, play an arpeggio on the piano, or parallel-park, reflecting on your actions leads to inaccuracies, blunders, and sometimes even utter paralysis--that's what is widely believed. But is it true? After exploring some of the contemporary and historical manifestations of the idea, Barbara Gail Montero (...) develops a theory of expertise which emphasizes the role of the conscious mind in expert action. She aims to dispel various myths about experts who proceed without any understanding of what guides their action, and she analyzes research in both philosophy and psychology that is taken to show that conscious control and explicit monitoring of one's movements impedes well practiced skills. Montero explores a wide range of real-life examples of optimal performance, in sports, the performing arts, healthcare, the military, and other fields, and draws from psychology, neuroscience, and literature to offer a refreshing and persuasive view of expertise, according to which expert action generally is and ought to be thoughtful, effortful, and reflective. (shrink)

This book examines the birth of the scientific understanding of motion. It investigates which logical tools and methodological principles had to be in place to give a consistent account of motion, and which mathematical notions were introduced to gain control over conceptual problems of motion. It shows how the idea of motion raised two fundamental problems in the 5th and 4th century BCE: bringing together being and non-being, and bringing together time and space. The first problem leads to the exclusion (...) of motion from the realm of rational investigation in Parmenides, the second to Zeno's paradoxes of motion. Methodological and logical developments reacting to these puzzles are shown to be present implicitly in the atomists, and explicitly in Plato who also employs mathematical structures to make motion intelligible. With Aristotle we finally see the first outline of the fundamental framework with which we conceptualise motion today. (shrink)

Philosophers have long distinguished between appearance and reality, and the opposition between a supposedly deceptive surface and a more profound truth is deeply rooted in Western culture. At a time of obsession with self-representation, when politics is enmeshed with spectacle and social and economic forces are intensely aestheticized, philosophy remains moored in traditional dichotomies: being versus appearing, interiority versus exteriority, authenticity versus alienation. Might there be more to appearance than meets the eye? In this strikingly original book, Barbara Carnevali (...) offers a philosophical examination of the roles that appearances play in social life. While Western metaphysics and morals have predominantly disdained appearances and expelled them from their domain, Carnevali invites us to look at society, ancient to contemporary, as an aesthetic phenomenon. The ways in which we appear in public and the impressions we make in terms of images, sounds, smells, and sensations are discerned by other people's senses and assessed according to their taste; this helps shape our ways of being and the world around us. Carnevali shows that an understanding of appearances is necessary to grasp the dynamics of interaction, recognition, and power in which we live-and to avoid being dominated by them. Anchored in philosophy and traversing sociology, art history, literature, and popular culture, Social Appearances develops new theoretical and conceptual tools for today's most urgent critical tasks. (shrink)

In this paper we respond to Angus Dawson’s and Marcel Verweij’s recent editorial on ‘Solidarity: A Moral Concept in need of Clarification’. While Dawson’s and Verweij’s call for a broader solidarity-based research agenda is highly timely, their critique of our Report on ‘Solidarity as an Emerging Concept in Bioethics’ (2011) is based on some mistaken assumptions and misinterpretations of our arguments. These are (1) a fundamental misunderstanding of the importance of practice in our conceptualisation of solidarity; (2) a misinterpreration of (...) the normativity of our concept; and (3) a misrepresentation of our case study of public policy in the context of pandemics and in turn, of the relevance of our concept for policy-making. We correct each of these and in a final section we comment on the model of rational and constitutive solidarity put forward by Dawson and Verweij as an alternative to our conception of solidarity. (shrink)

This book is an introduction to the philosophy of Arthur Schopenhauer, written in a lively, personal style.

This volume explores the cross-linguistic diversity, and possibly inconsistency, of the span of linguistic means that signal reported speech and thought. The integration of broad linguistic (viewpoint in conversation and narrative) and cognitive (theory of mind and understanding the inner life and thought of others) strategies for handling mixed points of view will be considered.

Barbara Herman argues for a radical shift in the way we perceive Kant's ethics. She convincingly reinterprets the key texts, at once allowing Kant to mean what he says while showing that what Kant says makes good moral sense. She urges us to abandon the tradition that describes Kantian ethics as a deontology, a moral system of rules of duty. She finds the central idea of Kantian ethics not in duty but in practical rationality as a norm of unconditioned (...) goodness. This book both clarifies Kant's own theory and adds programmatic vitality to modern moral philosophy. (shrink)

As a consequence of the COVID-19 pandemic, the number of decentralized clinical trials, trials conducted in whole or in part at locations other than traditional clinical trial sites, significantly increased. While these trials have the potential advantage of access, participant centricity, convenience, lower costs, and efficiency, they also raise a number of important ethical and practical concerns. Here we focus on a number of those concerns, including participant safety, privacy and confidentiality, remote consent, digital access and proficiency, and trial oversight. (...) Awareness of these ethical complexities will help foster the development of processes and cooperative solutions to promote safe, ethical trials going forward, optimized to decrease burden and increase access for all participants. (shrink)

The ancient history of flamenco is pure hypothesis, partly owing to the “ Dark Ages “ which shrouded the folk expression of a large portion of Andalusia from soon after the victory of the Catholic Kings at Granada in 1492 until the emancipation laws of Charles III in 1783. Although flamenco as such is a product of the nineteenth century, the hypothesis may be taken right back to pre-Iberian days when there was a flourishing civilization in the south of Spain, (...) with its capital, Tartessos, more or less where Seville—or Cadiz—is now, perhaps the first Empire in the West. The Iberians inhabited the north and the east but the towns along the Andalusian coast were founded by Phoenicians from Tyre (Cadiz) and Phocaeans from Asia Minor (Málaga). During the Celtic invasions the south was held by Carthage until Andalusia finally became Roman as a result of the Punic wars. (shrink)