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PurposeIn April 2020, it was announced that NHSX, a unit of the UK National Health Service (NHS) responsible for digital innovation, was developing a contact tracing app that would offer a digital solution to managing the COVID-19 pandemic. Despite the urgency with which the app was developed, a clear commitment was made to designing the technology in a way that enshrined key ethical principles, and an ethics advisory board (EAB) was established to provide timely advice, guidance and recommendations on associated ethical issues. Alongside this, there were extensive criticisms of how NHSX adhered to ethical principles in the handling of the app development-criticisms that require empirical exploration. This paper explores how ethics was incorporated into decision-making during governance processes associated with the development of app.Design/methodology/approachInterviews were conducted with those involved in the app's development/governance, those with a consulting role associated with the app, or those who sat on the EAB.FindingsThe EAB fulfilled an important role by introducing ethical considerations to app developers. Though at times, it was difficult to accommodate key ethics principles into governance processes, which sometimes suffered from little accountability.Originality/valueWhile several articles have provided overviews of ethical issues, or explored public perceptions towards contact tracing apps, to the best the authors, knowledge this is the first empirical piece analysing ethics governance issues via stakeholder interviews.

In order to combat the COVID-19 pandemic, policymakers around the globe have increasingly invested in digital health technologies to support the 'test, track and trace' approach of containing the spread of the novel coronavirus. These technologies include mobile 'contact tracing' applications (apps), which can trace individuals likely to have come into contact with those who have reported symptoms or tested positive for the virus and request that they self-isolate. This paper takes a critical public health perspective that advocates for 'genuine participation' in public health interventions and emphasises the need to take citizen's knowledge into account during public health decision-making. In doing so, it presents and discusses the findings of a UK interview study that explored public views on the possibility of using a COVID-19 contact-tracing app public health intervention at the time the United Kingdom (UK) Government announced their decision to develop such a technology. Findings illustrated interviewees' range and degree of understandings, misconceptions, and concerns about the possibility of using an app. In particular, concerns about privacy and surveillance predominated. Interviewees associated these concerns much more broadly than health by identifying with pre-existent British national narratives associated with individual liberty and autonomy. In extending and contributing to ongoing sociological research with public health, we argue that understanding and responding to these matters is vital, and that our findings demonstrate the need for a forward-looking, anticipatory strategy for public engagement as part of the responsible innovation of the COVID-19 contact-tracing app in the UK. ispartof: CRITICAL PUBLIC HEALTH vol:32 issue:1 pages:31-43 ispartof: location:England status: published

Purpose The research question is: what are older adults’ experiences of shared decision making (SDM) in a healthcare setting? This involved exploring older adults’ experiences and opinions of decision making in a healthcare setting, and understanding what SDM means to older adults. The paper aims to discuss this issue. Design/methodology/approach A qualitative study using face-to-face, semi-structured interviews with adults over 65 years was conducted. Thematic analysis was used. Findings Three broad themes were identified which ascribed roles to individuals involved in decision making. This includes the way in which older adults felt they should be involved actively: by asking questions and knowing their own body. The doctors’ role was described as assistive by facilitating discussion, giving options and advice. The role of the family was also explored; older adults felt the family could impact on their decisions in both a direct and indirect way. There was some confusion about what constituted a decision. Research limitations/implications This was a small qualitative study in a market town in England. Practical implications Clinicians should facilitate the involvement of older adults in SDM and consider how they can increase awareness of this. They should also involve the family in decision making. Originality/value There are limited studies which look at this issue in depth.

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. ispartof: Critical Public Health vol:32 issue:1 pages:5-18 ispartof: location:England status: Published online

The integration of open science as a key pillar of responsible research and innovation has led it to become a hallmark of responsible research. However, ethical, social and regulatory challenges still remain about the implementation of an internationally- and multi-sector-recognised open science framework. In this Commentary, we discuss one important specific challenge that has received little ethical and sociological attention in the open science literature: the environmental impact of the digital infrastructure that enables open science. We start from the premise that a move towards an environmentally sustainable open science is a shared and valuable goal, and discuss two challenges that we foresee with relation to this. The first relates to questions about how to define what environmentally sustainable open science means and how to change current practices accordingly. The second relates to the infrastructure needed to enact environmentally sustainable open science ethical and social responsibilities through the open science ethics ecosystem. We argue that there are various ethical obstacles regarding how to responsibly balance any environmental impacts against the social value of open science, and how much one should be prioritised over the other. We call for all actors of the open science ethics ecosystem to engage in discussions about how to move towards open data and science initiatives that take into account the environmental impact of data and digital infrastructures. Furthermore, we call for ethics governance frameworks or policy-inscribed standards of practice to assist with this decision-making.

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.

Mobile health (mHealth) is rapidly being implemented and changing our ways of doing, understanding and organising healthcare. mHealth includes wearable devices as well as apps that track fitness, offer wellness programmes or provide tools to manage chronic conditions. According to industry and policy makers, these systems offer efficient and cost-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical issues raised by mHealth and aims to draw scholarly attention to the ethical significance of its promises and challenges. We show that the overly positive promises of mHealth need to be nuanced and their desirability critically assessed. Finally, we offer suggestions to bioethicists to engage with this emerging trend in healthcare to develop mHealth to its best potential in a morally sound way.

Robots are slowly, but certainly, entering people’s professional and private lives. They require the attention of regulators due to the challenges they present to existing legal frameworks and the new legal and ethical questions they raise. This paper discusses four major regulatory dilemmas in the field of robotics: how to keep up with technological advances; how to strike a balance between stimulating innovation and the protection of fundamental rights and values; whether to affirm prevalent social norms or nudge social norms in a different direction; and, how to balance effectiveness versus legitimacy in techno-regulation. The four dilemmas are each treated in the context of a particular modality of regulation: law, market, social norms, and technology as a regulatory tool; and for each, we focus on particular topics – such as liability, privacy, and autonomy – that often feature as the major issues requiring regulatory attention. The paper then highlights the role and potential of the European framework of rights and values, responsible research and innovation, smart regulation and soft law as means of dealing with the dilemmas.

Mobile applications are increasingly regarded as important tools for an integrated strategy of post-lockdown policy response around the globe. This paper explores how the use of smartphone applications for digital contact tracing is currently being framed by media, experts and policy-makers and discusses a number of questions raised by the debate on digital surveillance at the time of Covid-19: How can personal data be adequately collected and protected? Who should access data? What is a legitimate role for Big Tech companies in the development and implementation of these systems? How is the cultural and moral context taken into account in the design of these apps? Should use of these apps be compulsory? What does transparency and ethical oversight mean in this context? As we show that responses to these questions are complex and uncertain, we argue that rather than technological fixes to the current emergency these apps should be introduced in society as societal experimental trials whose effectiveness and consequences need to be closely and independently monitored the same level of precaution and safeguards that social experimentation require.

Data-driven digital technologies are often presented in policy agendas as contributing to the goal of sustainable development by providing information to reduce energy consumption and offering a green alternative to industries and behaviour with a higher environmental footprint. However, it is widely acknowledged in the context of environmental research that Information and Communication Technologies (ICT) in general, and data centres and cloud computing in particular, have a heavy footprint featuring a high consumption of non-renewable energy, waste production and carbon dioxide emissions. In spite of this, environmental issues have so far figured only sparsely in both policy initiatives supporting data-driven digital initiatives, as well as in recent ethics and governance scholarly literature discussing the data-driven revolution. We convened an interdisciplinary workshop to map out the current conceptual landscape on the environmental impacts of data-driven technologies, and to explore how ethical thinking can contribute to it. In this commentary, we discuss the main themes that emerged and our call for action.

This paper addresses a problem that has so far been neglected by scholars investigating the ethics of Big Data and policy makers: that is the ethical implications of Big Data initiatives’ environmental impact. Building on literature in environmental studies, cultural studies and Science and Technology Studies, the article draws attention to the physical presence of data, the material configuration of digital service, and the space occupied by data. It then explains how this material and situated character of data raises questions concerning the ethics of the increasingly fashionable Big Data discourses. It argues that attention should be paid to (1) the vocabulary currently used when discussing the governance of data initiatives; (2) the internal tension between current data initiatives and environmental policies; (3) issues of fair distribution. The article explains how taking into account these aspects would allow for a more responsible behaviour in the context of data storage and production.

Throughout many parts of the world, biomedical research ethics is based on a core body of well-established norms, rules, and principles, including the Declaration of Helsinki, the Nuremberg Code, the Belmont Report, and the International Ethical Guidelines for Biomedical Research Involving Human Subjects (1). The overarching goal of these codifications is to protect people against harms arising from research, and from researchers experimenting on them without their knowledge and permission. More recently, and because of the increasing technological capabilities for digital data production, storage, and analysis (such as web and ubiquitous computing, wearables, apps), new opportunities for conducting biomedical research have emerged. Data-intensive approaches in biomedicine, made possible by the increasing availability of digital health data and biobanks, are profoundly changing the ways in which research is conducted, and the role of research participants and health care (2-4). Physical contact between researchers and study participants is no longer needed and, once collected and stored, participants’ data remain available for potential reuse in further research for various purposes. With the growth of data-intensive approaches in biomedical research, a rich discussion on the saliency of moral considerations pertaining to the management of personal data in health databases and biobanks has unfolded (5).

Consumer genomics and mobile health provide health-related information to individuals and offer advice for lifestyle change. These ‘technologies for healthy lifestyle’ occupy an ambiguous space between the highly regulated medical domain and the less regulated consumer market. We argue that this ambiguity challenges implicit distinctions between what is medical and what is related to personal lifestyle choices within current regulatory systems. In this article, we discuss how consumer genomics and mobile health devices give rise to new ways of creating (and making sense of) health-related knowledge. We also address some of the implications of harnessing, rather than denying, the hybridity of mobile health devices, being situated between medical devices and consumer products, between health and lifestyle.

Increasing numbers of patients have direct access to their electronic health records (EHRs). Proponents of direct access argue that it empowers patients by making them more informed and offering them more control over their health and care. According to some proponents of patients' access to EHRs, clinicians' concerns about potential negative implications are grounded in a form of paternalism that protects clinicians' authority. This paper draws upon narratives from patients in the United Kingdom (UK) who have access to their EHRs and suggests strategies for moving beyond these controversies between proponents and critics of the system. It additionally shows that the very organizational, procedural, and technological infrastructure that promises patients' increased access to records can also exacerbate some patients' "difficult" behaviors.

(2014). Laws on Robots, Laws by Robots, Laws in Robots: Regulating Robot Behaviour by Design. Law, Innovation and Technology: Vol. 6, No. 2, pp. 193-220.

In recent years, several authors have argued that the desirability of novel technologies should be assessed early, when they are still emerging. Such an ethical assessment of emerging technologies is by definition focused on an elusive object. Usually promises, expectations, and visions of the technology are taken as a starting point. As Nordmann and Rip have pointed out in a recent article, however, ethicists should not take for granted the plausibility of such expectations and visions. In this paper, we explore how the quality of expectations on emerging technologies might be assessed when engaging in a reflection on the desirability of emerging technologies. We propose that an assessment of expectations' plausibility should focus on statements on technological feasibility, societal usability, and desirability of the expected technology. Whereas the feasibility statement and, to a lesser extent, the usability statements are frequently quite futuristic, the claims on desirability, by contrast, often display a conservative stance towards the future. Assessing the quality of expectations and visions on behalf of emerging technologies requires, then, a careful and well-directed use of both skepticism and imagination. We conclude with a brief overview of the tools and methods ethicists could use to assess claims made on behalf of emerging technologies and improve the ethical reflection on them.

When a scientific and technological field is still emerging, promises of its social desirability and warnings about its potential negative effects are wide spread. The dawn of the Human Genome Project (HGP) is an exemplar in this respect. The high expectations that emerged from the early stage of genomics research have been drastically deflated while the field has continued to develop. Difficulties, uncertainty and unanticipated constraints arose at later stages of research to challenge the initial expectations of scientists, investors, policy makers, clinicians, patients and other social groups. These projections into the future described an individual or collective belief in the possibility that a certain state of affairs would come into being. Drawing on a diverse set of literature, this chapter discusses the strategic, performative and normative character of visions of technological futures. It argues that if, on the one hand, visions are morally characterized as implicitly normative, while, on the other, technologies and our morality mutual shape each other, the analysis of their “plausibility”, rather than their “desirability”, becomes crucial. The chapter concludes by outlining an approach to the reconstruction of plausible expectations around emerging technologies consisting of thickening, zooming in/out and situating visions of emerging technologies.

This chapter addresses the question of how the analysis of expectations’ plausibility, described in the previous chapters, contributes to the goal of fostering a democratic deliberation on the normative acceptability of emerging technologies (outlined in Chap. 1). Building on pragmatist ethics approaches, the normative ideal of democratic deliberations around science and technology is outlined as an attempt to include different perspectives in the deliberative process; articulate the reasons, meanings and assumptions behind a problem; and explore possible scenarios of how new technologies change our moral concepts and vocabularies. In this context, “moral imagination” is presented as a way of broadening democratic deliberation exercises to create spaces for discussions of “ideas of good” and moral values. After reviewing some types of scenarios that have been developed as tools for discussing the social and ethical issues of emerging technologies (namely, “socio-technical” scenarios and “techno-ethical” scenarios and vignettes), indicating some of their limitations, the chapter addresses the issue of using scenarios to trigger the moral imagination of technology developers. It does so by discussing two exercises based on the analysis of expectations’ plausibility conducted in the previous chapters of this book that have been designed in order to produce a “grounded” and “exploratory” discussion with the developers of the Nanopil and Immunosignatures.

This chapter addresses the questions pertaining to the analysis of expectations around the use of emerging technologies. As in the previous chapter, the Nanopil – an emerging artifact for colorectal cancer screening – offers a case study to address the central question of this chapter. The concept of a “fictive script” is introduced as a useful analytic tool to investigate scenarios of use and application of an emerging technology. The fictive scripts conceived by designers are compared both with the script inscribed in the technological object, and with alternative “worlds” as conceived by other actors. Following a short explanation of the research design used for investigating these questions in the case of the Nanopil, the findings of this analysis are presented and critically discussed.

Building on the analyses provided in Chaps. 3 and 4, this chapter establishes that general claims regarding the desirability of an emerging technology appear to often draw on a superficial unifying rhetoric of supposedly shared values. The discourses on the desirability of the Nanopil implicitly or explicitly refer to a number of values – autonomy, care, comfort, efficiency – that the technology is claimed to promote. The analysis demonstrates the ambivalence and contradictions inherent in the expectation that a technology “offers a solution for a social problem”, “addresses a need” and “improves our current practice”. It does so by building on frameworks developed in the field of philosophy of technology and within the “Vision Assessment” approach. Such frameworks bring forward the moral connotation of possible design choices and the latent ethical controversies in stakeholders’ normative positions, as well as potential technology-mediated changes in the current moral landscape and value framework.

The mandate to the assessment of new technologies has been evolving for the last four decades according to societal and political contexts. As such, this chapter explains evolving trends towards more participatory and deliberative models of Technology Assessment (hereafter TA) and increasingly broader sets of aspects (beyond efficiency and health impacts) of ethical inquiry. It discusses in which sense TA initiatives have been criticized for a normative deficit, while bioethics councils and applied ethics approaches to the study of new technologies have been accused of a technological and sociological deficit. In addressing the question of how to integrate ethical inquiry in TA and how to account for societal contexts, the literature has focused on the importance of accounting for techno-social co-shaping and stakeholders’ conflicts while exploring the moral dimensions, framing and values inherent in new technologies or actors’ controversies. Within this enterprise, the issues of emergence, uncertainty and dynamic evolution that characterize the technologies under investigation deserve attention. The debate on “speculative ethics” is introduced as a reflection on the possibilities of knowledge concerning technologies that are still emerging and, as such, do not fully exist yet. If emerging technologies do not yet exist and we can only address them as prospective projections, how can we guarantee that an assessment of their desirability is epistemologically robust? The contribution of this book lies in addressing this question.

“A world without patients”: this is the motto of the Arizona State University spin-off company manufacturing microchips for research on “Immunosignatures”. By its developers, immunosignatures (ImSg) are presented as a “technological revolution” able to transform diagnostics and improve the American healthcare system. How is the plausibility of these expectations constructed and how can it be assessed? Chapters 3, 4 and 5 of this book use the Nanopil to justify and explain the single steps of a framework for analyzing the plausibility of expectations of emerging technologies. This chapter illustrates the wider applicability of this framework using the case of ImSg. After an introduction on the promise of this technology and a description of the research design, the two central sections analyze expectations in relation to this technoscientific project and its context of use. Based on these analyses, the plausibility of expectations that the ImSg will bring about desirable outcomes is discussed. The chapter concludes with a reflection on the plausibility assessment framework through a comparison of the cases of the Nanopil and Immunosignature.

In summarizing the main contributions of the book, this last chapter examines in what ways the approach discussed so far addresses the question, articulated in Chap. 1, of how to integrate normative sensitiveness in TA. It demonstrates in what way addressing the question of plausibility allows ethicists (as well as social scientists, bioethical committees, policy makers, technology developers, etc.) to address the normative questions that surround the issue of social desirability of emerging technologies with a broader set of visions wherein the material morality of artifacts, the worldviews of stakeholders and the dynamics of moral changes are spelled out. The chapter also considers the role of the “ethicist” in such processes and concludes by outlining some open questions for further research.

Between 2009 and 2011, TV, national newspapers, magazines, and a children’s book presented images of the “Nanopil”. A device designed to function as a miniaturized lab within the human body, the Nanopil is expected to test the presence of biomarkers for colorectal cancer and transmit the result to an outside receiver. As the first of three chapters using the “Nanopil” as an example, this one discusses how to analyze expectations about a future artifact. Providing tangible examples from this case study based on in-depth interviews with Nanopil developers and observation within their laboratory, the chapter explores alternative designs, components and conditions of its functioning. The conclusions highlight how such analysis contributes to ruling out implausible scenarios and adds significant detail to the initial public expectations.