Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

From hostile worlds to multiple spheres: towards a normative pragmatics of justice for the Googlization of health.

The datafication and digitalization of health and medicine has engendered a proliferation of new collaborations between public health institutions and data corporations like Google, Apple, Microsoft and Amazon. Critical perspectives on these new partnerships tend to frame them as an instance of market transgressions by tech giants into the sphere of health and medicine, in line with a "hostile worlds" doctrine that upholds that the borders between market and non-market spheres should be carefully policed. This article seeks to outline the limitations of this common framing for critically understanding the phenomenon of the Googlization of health. In particular, the mobilization of a diversity of non-market value statements in the justification work carried out by actors involved in the Googlization of health indicates the co-presence of additional worlds or spheres in this context, which are not captured by the market vs. non-market dichotomy. It then advances an alternative framework, based on a multiple-sphere ontology that draws on Boltanski and Thevenot's orders of worth and Michael Walzer's theory of justice, which I call a normative pragmatics of justice. This framework addresses both the normative deficit in Boltanski and Thevenot's work and provides an important emphasis on the empirical workings of justice. Finally, I discuss why this framework is better equipped to identify and to address the many risks raised by the Googlization of health and possibly other dimensions of the digitalization and datafication of society.

Blind-sided by privacy? Digital contact tracing, the Apple/Google API and big tech's newfound role as global health policy makers.

Since the outbreak of COVID-19, governments have turned their attention to digital contact tracing. In many countries, public debate has focused on the risks this technology poses to privacy, with advocates and experts sounding alarm bells about surveillance and mission creep reminiscent of the post 9/11 era. Yet, when Apple and Google launched their contact tracing API in April 2020, some of the world's leading privacy experts applauded this initiative for its privacy-preserving technical specifications. In an interesting twist, the tech giants came to be portrayed as greater champions of privacy than some democratic governments. This article proposes to view the Apple/Google API in terms of a broader phenomenon whereby tech corporations are encroaching into ever new spheres of social life. From this perspective, the (legitimate) advantage these actors have accrued in the sphere of the production of digital goods provides them with (illegitimate) access to the spheres of health and medicine, and more worrisome, to the sphere of politics. These sphere transgressions raise numerous risks that are not captured by the focus on privacy harms. Namely, a crowding out of essential spherical expertise, new dependencies on corporate actors for the delivery of essential, public goods, the shaping of (global) public policy by non-representative, private actors and ultimately, the accumulation of decision-making power across multiple spheres. While privacy is certainly an important value, its centrality in the debate on digital contact tracing may blind us to these broader societal harms and unwittingly pave the way for ever more sphere transgressions.

The ethics of inattention: revitalising civil inattention as a privacy-protecting mechanism in public spaces.

Societies evolve practices that reflect social norms of appropriateness in social interaction, for example when and to what extent one should respect the boundaries of another person's private sphere. One such practice is what the sociologist Erving Goffman called civil inattention-the social norm of showing a proper amount of indifference to others-which functions as an almost unnoticed yet highly potent privacy-preserving mechanism. These practices can be disrupted by technologies that afford new forms of intrusions. In this paper, we show how new networked technologies, such as facial recognition (FR), challenge our ability to practice civil inattention. We argue for the need to revitalise, in academic and policy debates, the role of civil inattention and related practices in regulating behaviour in public space. Our analysis highlights the relational nature of privacy and the importance of social norms in accomplishing and preserving it. While our analysis goes some way in supporting current calls to ban FR technology, we also suggest that, pending a ban and in light of the power of norms to limit what is otherwise technically possible, cultivating new practices of civil inattention may help address the challenges raised by FR and other forms of digital surveillance in public.

Towards a seamful ethics of Covid-19 contact tracing apps?

In the early months of 2020, the deadly Covid-19 disease spread rapidly around the world. In response, national and regional governments implemented a range of emergency lockdown measures, curtailing citizens' movements and greatly limiting economic activity. More recently, as restrictions begin to be loosened or lifted entirely, the use of so-called contact tracing apps has figured prominently in many jurisdictions' plans to reopen society. Critics have questioned the utility of such technologies on a number of fronts, both practical and ethical. However, little has been said about the ways in which the normative design choices of app developers, and the products that result therefrom, might contribute to ethical reflection and wider political debate. Drawing from scholarship in critical design and human-computer interaction, this paper examines the development of a QR code-based tracking app called Zwaai ('Wave' in Dutch), where its designers explicitly positioned the app as an alternative to the predominant Bluetooth and GPS-based approaches. Through analyzing these designers' choices, this paper argues that QR code infrastructures can work to surface a set of ethical-political seams, two of which are discussed here-responsibilization and networked (im)permanence-that more 'seamless' protocols like Bluetooth actively aim to bypass, and which may go otherwise unnoticed by existing ethical frameworks.

Towards a Phenomenology of Technologically Mediated Moral Change: Or, What Could Mark Zuckerberg Learn from Caregivers in the Southern Netherlands?

Kamphof offers an illuminating depiction of the technological mediation of morality. Her case serves as the basis for a plea for modesty up and against the somewhat heroic conceptualizations of techno-moral change to date-less logos, less autos, more practice, more relationality. Rather than a displacement of these conceptualizations, I question whether Kamphof's art of living offers only a different perspective: in scale (as a micro-event of techno-moral change), and in unit of analysis (as an art of living oriented to relations with others rather than the relation to the self). As a supplement and not an alternative, this modest art has nonetheless audacious implications for the ethics of surveillance.

The European health data space: Too big to succeed?

In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific "data spaces", the EHDS is a high-stakes development that will transform health data governance in the EU region. As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits. Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal.

Normative positions towards COVID-19 contact-tracing apps: findings from a large-scale qualitative study in nine European countries.

Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support 'traditional' forms of contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349 interviews conducted in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, the Netherlands, German-speaking Switzerland, the United Kingdom), this paper shows that the binary framing often found in surveys and polls, which contrasts privacy concerns with the usefulness of these interventions for public health, does not capture the depth, breadth, and nuances of people's positions towards COVID-19 contact-tracing apps. The paper provides a detailed account of how people arrive at certain normative positions by analysing the argumentative patterns, tropes and (moral) repertoires underpinning people's perspectives on digital contact-tracing. Specifically, we identified a spectrum comprising five normative positions towards the use of COVID-19 contact-tracing apps: opposition, scepticism of feasibility, pondered deliberation, resignation, and support. We describe these stances and analyse the diversity of assumptions and values that underlie the normative orientations of our interviewees. We conclude by arguing that policy attempts to develop and implement these and other digital responses to the pandemic should move beyond the reiteration of binary framings, and instead cater to the variety of values, concerns and expectations that citizens voice in discussions about these types of public health interventions.

Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.

The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.

COVID-19 and Contact Tracing Apps: Ethical Challenges for a Social Experiment on a Global Scale.

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.

The Googlization of health research: from disruptive innovation to disruptive ethics.

Consumer-oriented mobile technologies offer new ways of capturing multidimensional health data, and are increasingly seen as facilitators of medical research. This has opened the way for large consumer tech companies, like Apple, Google, Amazon and Facebook, to enter the space of health research, offering new methods for collecting, storing and analyzing health data. While these developments are often portrayed as 'disrupting' research in beneficial ways, they also raise many ethical issues. These can be organized into three clusters: questions concerning the quality of research; privacy/informed consent; and new power asymmetries based on access to data and control over technological infrastructures. I argue that this last cluster, insofar as it may affect future research agendas, deserves more critical attention.