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.
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)
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)
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)
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 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)
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)
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)
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. No data are available. (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)
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)
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)
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)
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.
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.
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’ 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)