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1.
Med Humanit ; 2023 Jun 05.
Article in English | MEDLINE | ID: covidwho-20237891

ABSTRACT

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.

2.
Ethics Inf Technol ; : 1-11, 2020 Sep 28.
Article in English | MEDLINE | ID: covidwho-2315380

ABSTRACT

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.

3.
SSM Qual Res Health ; 2: 100158, 2022 Dec.
Article in English | MEDLINE | ID: covidwho-2008133

ABSTRACT

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.

4.
Crit Public Health ; 32(1): 5-18, 2022.
Article in English | MEDLINE | ID: covidwho-1254198

ABSTRACT

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.

5.
J Bioeth Inq ; 17(4): 835-839, 2020 Dec.
Article in English | MEDLINE | ID: covidwho-728247

ABSTRACT

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.


Subject(s)
COVID-19 , Contact Tracing/ethics , Mobile Applications/ethics , Access to Information , Humans , Privacy , Public Health , SARS-CoV-2
6.
Ethics Inf Technol ; 23(Suppl 1): 45-57, 2021.
Article in English | MEDLINE | ID: covidwho-665468

ABSTRACT

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.

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