We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We (...) frame these concerns using five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

The COVID-19 global pandemic has stretched the capacities of public health institutions and health systems around the world, opening the door to a range of technologically-driven solutions. In this article, we seek to historicize the expanding role of digital health technologies and examine the political-economic context from which they have emerged. Drawing on critical insights from science and technology studies, we maintain that the rise of digital health technologies has been catalyzed by (...) broad shifts in global health governance that have expanded the role of market forces in public health and a unique set of political and economic crises that have accelerated the adoption of digital technologies—often under the guise of appeals to technological innovation to address “unprecedented” crises. These interrelated historical trends, we contend, are critical for understanding current state responses to the pandemic and possibilities for more equitable and democratic applications of technology in public health. (shrink)

Digital phenotyping is the term given to the capturing and use of user log data from health and wellbeing technologies used in apps and cloud-based services. This paper explores ethical issues in making use of digital phenotype data in the arena of digital health interventions. Products and services based on digital wellbeing technologies typically include mobile device apps as well as browser-based apps to a lesser extent, and can include telephony-based services, text-based (...) chatbots, and voice-activated chatbots. Many of these digital products and services are simultaneously available across many channels in order to maximize availability for users. Digital wellbeing technologies offer useful methods for real-time data capture of the interactions of users with the products and services. It is possible to design what data are recorded, how and where it may be stored, and, crucially, how it can be analyzed to reveal individual or collective usage patterns. The paper also examines digital phenotyping workflows, before enumerating the ethical concerns pertaining to different types of digital phenotype data, highlighting ethical considerations for collection, storage, and use of the data. A case study of a digital health app is used to illustrate the ethical issues. The case study explores the issues from a perspective of data prospecting and subsequent machine learning. The ethical use of machine learning and artificial intelligence on digital phenotype data and the broader issues in democratizing machine learning and artificial intelligence for digital phenotype data are then explored in detail. (shrink)

Despite advances in the treatment of heart failure, the physical symptoms and stress of the disease continue to negatively impact patients’ health outcomes. Technology now offers promising ways to integrate personalized support from health care professionals via a variety of platforms. Digital health technology solutions using mobile devices or those that allow remote patient monitoring are potentially more cost effective and may replace in-person interaction. Notably, digital health methods may not only improve clinical outcomes (...) but may also improve the psycho-social status of HF patients. Using digital health to address biopsychosocial variables, including elements of the person and their context is valuable when considering chronic illness and HF in particular, given the multiple, cross-level factors affecting chronic illness clinical management needed for HF self-care. (shrink)

Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as (...) users and innovators. This patient‐led innovation has been celebrated in innovation studies and economics as a “bottom‐up” type of innovation. In this article, we take a closer look at open‐source patient‐led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient‐led innovation and its socio‐political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open‐source patient‐led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient‐led innovation from more fully materializing its innovative potential. (shrink)

Digital Health Tools (DHTs), also known as patient self-surveilling strategies, have increasingly been promoted by health-care policy makers as technologies that have the capacity to transform patients’ lives. At the heart of the debate is the notion of empowerment. In this paper, we argue that what is required is not so much empowerment but rather a shift to enabling DHTs as digital companions. This will enable policy makers and health-care system designers to provide a (...) more balanced view—one that capitalises on the benefits of DHTs, while minimising the risks of potential harms. -/- . (shrink)

Much has been said about the potential of digital health technologies for democratizing health care. But how exactly is democratization with digital health technologies conceptualized and what does it involve? We investigate debates on the democratization of health care with digital health and identify that democratization is being envisioned as a matter of access to health information, health care, and patient empowerment. However, taking a closer look at the (...) growing pool of empirical data on digital health, we argue that these technologies come short of materializing these goals, given the unequal health outcomes they facilitate. Building on this evidence, we argue that not only debates on democratization need to be connected to concerns of social determinants of health but also debates on the impact of digital health need to go far beyond democratization and engage with concerns of health justice. (shrink)

Digital health includes applications for smartphones and smart speakers as well as more traditional ways to access health information electronically, such as through your health care provider's online web‐based patient portal. As the number of digital health offerings—such as smartphone health trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digital health product development? For starters, the field of bioethics is concerned about issues of social justice, (...) including equitable benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digital health applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digital health products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digital health care disparities. (shrink)

In recent years, all major consumer technology corporations have moved into the domain of health research. This ‘Googlization of health research’ begs the question of how the common good will be served in this research. As critical data scholars contend, such phenomena must be situated within the political economy of digital capitalism in order to foreground the question of public interest and the common good. Here, trends like GHR are framed within a double, incommensurable logic, where private (...) gain and economic value are pitted against public good and societal value. While helpful for highlighting the exploitative potential of digital capitalism, this framing is limiting, insofar as it acknowledges only one conception of the common good. This article uses the analytical framework of modes of justification developed by Boltanksi and Thévenot to identify a plurality of orders of worth and conceptualizations of the common good at work in GHR. Not just the ‘civic’ and ‘market’ orders, but also an ‘industrial’, a ‘project’, and what I call a ‘vitalist’ order. Using promotional material of GHR initiatives and preliminary interviews with participants in GHR projects, I ask what moral orientations guide different actors in GHR. Engaging seriously with these different conceptions of the common good is paramount. First, in order to critically evaluate them and explicate what is at stake in the move towards GHR, and ultimately, in order to develop viable governance solutions that ensure strong ‘civic’ components. (shrink)

The proposition that digital innovations can put people in charge of their health has been accompanied by prolific talk of empowerment. In this paper we consider ethical challenges and opportunities of trying to achieve justice and empowerment using digital health initiatives. The language of empowerment can misleadingly suggest that by using technology, people can control their health and take responsibility for health outcomes to a greater degree than is realistic or fair. Also, digital (...) health empowerment often primarily reaches people who already have high technological and health literacy, leaving others behind. We critically investigate whether the concept of health empowerment could be re-engineered to mean something different, namely the process of improving the health literacy and access of those who least possess it, in line with recent proposals for conceptual engineering in the service of justice. We settle on the weaker conclusion that underlying ethical values including justice should be used to interpret the existing concept of empowerment. To conclude, we take a high-level view of various strategies for achieving the ethical value associated with digital health empowerment. (shrink)

In exploring the intra-active, relational and material connections between humans and non- humans, proponents of posthumanism advocate a questioning of the ‘human’ beyond its traditional anthropocentric conceptualization. By referring specifically to controversial developments in mHealth applications, this paper critically diverges from posthuman accounts of human/non-human assemblages. Indeed, we argue that, rather than ‘dissolving’ the human subject, the power of assemblages lie in their capacity to highlight the antagonisms and contradictions that inherently affirm the importance of the subject. In outlining this (...) claim, we propose a turn from the posthuman to the inhuman as a way of understanding the contemporary landscape of (digital) health. (shrink)

Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach (...) honors and builds on Indigenous Data Sovereignty (IDS) decolonial scholarship by Indigenous and non-indigenous researchers and its adaptations to health research involving racialized communities from former European colonies in the global South. We discuss strategies to practice equity, diversity, inclusion, accessibility and decolonization (EDIAD) principles in digital health. We draw upon and adapt the concept of Precision Health Equity (PHE) to emphasize models of data sharing that are co-defined by racialized communities and researchers, and stress their shared governance and stewardship of data that is generated from digital health research. This paper contributes to an emerging research on equity issues in digital health and reducing health, institutional, and technological disparities. It also promotes the self-determination of racialized peoples through ethical data management. (shrink)

Wearable self-tracking devices capture multidimensional health data and offer several advantages including new ways of facilitating research. However, they also create a conflict between individual interests of avoiding privacy harms, and collective interests of assembling and using large health data sets for public benefits. While some scholars argue for transparency and accountability mechanisms to resolve this conflict, an average user is not adequately equipped to access and process information relating to the consequences of consenting to further uses of (...) her data. As an alternative, this paper argues for fiduciary relationships, which put deliberative demands on digital health data controllers to keep the interests of their data subjects at the forefront as well as cater to the contextual nature of privacy. These deliberative requirements ensure that users can engage in collective participation and share their health data at a lower risk of privacy harms. This paper also proposes a way to balance the flexible and open-ended nature of fiduciary law with the specific nature and scope of fiduciary duties that digital health data controllers should owe to their data subjects. (shrink)

Digital health technologies are often advocated as a way of helping people monitor, promote and manage their health, care for others and reduce the burden on healthcare systems. Yet these technologies have also been subject to criticism for limiting human flourishing and exacerbating socioeconomic disadvantage. Bioethical appraisals of digital health technologies tend to take a conventional risk‐benefit approach, positioning the human subject as a rational, autonomous agent who is acted on by (...) class='Hi'>technologies. In this paper, I present a case for adopting an alternative more‐than‐human perspective on bioethics. A more‐than‐human approach considers human‐technological assemblages and agencies as distributed, relational, situated and emergent. To illustrate the insights that this perspective can offer, I draw on the findings of four empirical projects I have conducted on people’s use of digital devices and platforms used for health‐related purposes, including social media groups and online forums, mobile apps and wearable devices. I conclude with the argument that a more‐than‐human approach to bioethics can begin to incorporate a new ‘zoë ethics’ that can acknowledge and address the deeper affective, multisensory and relational dimensions of humans’ encounters with and enactments of material things and nonhuman creatures. (shrink)

In this paper we will be discussing the ethical risks of the transcendental quality of virtual spaces as they apply to digital health, especially in relation to new attempts to construct a “social mediome.” As we will discuss in the following section, phenomenology has raised criticisms against the context-lessness and ethical opacity of technology. The creation of a social mediome seems to come as an answer to this criticism as it creates a context that gives voice and flesh (...) to human beings within their virtual lives. Yet, as we will discuss in this paper, the transcendental quality of this social mediome might involve the risk of normalizing health in a way that would prevent individuals from achieving well-being according to the meaning that they personally attribute to it. (shrink)

Healthcare expenditures account for approximately 9% of GDP in OECD countries and are on an upward trajectory (OECD, 2017). This significant financial burden, combined with an aging global population and increasing demand, emphasizes the imperative for sustained research and innovation to enhance health system efficacy. Key to this transformation are technological advancements, including digital health, which presents novel opportunities for improvement. Emerging digital health technologies, such as virtual consultations, complex imaging procedures, and electronic medical (...) records, are fundamental to modern healthcare infrastructures. However, significant gaps remain in the evaluation and understanding of these innovations, especially for nascent technological areas. This thesis addresses this subject, aiming to delineate how individuals and institutions can bolster their evaluative capabilities, strategic decision-making, and planning for the deployment of emerging digital healthcare technologies. The research methodology amalgamates theoretical exploration, literature scrutiny, and empirical examinations, presenting an integrated perspective that intersects the disciplines of Management & Decision Science, Technology & Innovation, and Health Economics & Outcomes Research. From an applied perspective, this research focuses on developing evidence within the context of pediatric healthcare in Canada — a context notably underrepresented in healthcare management research, despite its disproportionate per capita expenditure. Technologically, the predominant focus is on applications in virtual reality (VR) and three-dimensional (3D) printing and virtualization, though with the aspiration of ensuring the generalizability of results. The current thesis is structured to parallel the progression of the research itself, as three distinct phases; this begins with a comprehensive Background that contextualizes the initial intent, exploring the relationship between technology, innovation, and health outcomes. In this phase, each academic discipline is analyzed to identify base theoretical underpinnings for the research. The second phase of this work includes five empirical studies, each preceded by context-specific literature reviews for the respective technological domain, providing insight into the current state of evidence related to value-based assessment and economic evaluation in that area. Empirical studies included a randomized controlled trial and a cost consequences assessment of VR for pre-procedural preparation for medical imaging. Additionally, novel applications of 3D printing and virtualization are critically analyzed, accompanied by a multi-case study on the implementation of 3D printing in pediatrics, a cost-consequences study of applications for thoracoabdominal surgeries, and an outcomes study on the use of 3D virtualization in medical education during the COVID-19 pandemic. The final phase of this research includes the critical analysis and synthesis of findings into a proposal for a novel value-based assessment and decision-making framework specific to emerging health innovations; this framework integrates insights and resources for clinicians, administrators, and policymakers. The outcomes of this research are skewed toward Knowledge Users, but also aims to advance the theoretical basis for health technology assessment (HTA). (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the contribution (...) of wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

Against the background of the increasing importance of digitization in health care, the paper examines how medical practitioners who are involved in the development of digital health technologies legitimate and criticize the implementation and use of digital health technologies. Adopting an institutional logics perspective, the study is based on qualitative interviews with persons working at the interface of medicine and digital technologies development in Switzerland. The findings indicate that the developers believe (...) that digital health technologies could harmonize current conflicts between an increasing economization of the health care system and professional–ethical demands. At the same time, however, they show that digital technologies can undermine the demand for medical autonomy, a central element of the medical ethos. (shrink)

In this paper, we explore the idea of digital technologies as truth‐bearers in health care and argue that devices like SenseCam, which facilitate reflection and memory recall, have a potentially vital role in healthcare situations when questions of veracity are at stake (e.g., when best interest decisions are being made). We discuss the role of digital technologies as truth‐bearers in the context of nursing people with dementia, as this is one area of health care (...) in which the topic of truth‐telling has been hotly debated. People with dementia have been excluded from research studies and decisions that affect their lives because they are not regarded as truth‐bearers—that is, as being capable of giving truthful accounts of their experiences. Also, considerable research has focused on the ethics of lying to and deceiving people with dementia. Given their increasing prominence in healthcare settings, there has been surprisingly little discussion of what role digital technologies might play in relation to these questions of truth and deception. Drawing on theories from science and technology studies (STS), we explore their possible future role in some of the truth‐making processes of health care. In particular, we discuss the potential value of constraints on use of SenseCam to support the accounts of people with dementia as part of their care. (shrink)

Background Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptability and flexibility to address these ethical concerns. However, due to the immaturity of the concept and accompanying technology, dynamic consent has not yet been widely used in practice. This study aims to identify the facilitators of and barriers to adopting dynamic consent in real-world scenarios. Methods This scoping review, conducted in December (...) 2022, adhered to the PRISMA Extension for Scoping Reviews guidelines, focusing on dynamic consent within the health domain. A comprehensive search across Web of Science, PubMed, and Scopus yielded 22 selected articles based on predefined inclusion and exclusion criteria. Results The facilitators for the adoption of dynamic consent in digital health ecosystems were the provision of multiple consent modalities, personalized alternatives, continuous communication, and the dissemination of up-to-date information. Nevertheless, several barriers, such as consent fatigue, the digital divide, complexities in system implementation, and privacy and security concerns, needed to be addressed. This study also investigated current technological advancements and suggested considerations for further research aimed at resolving the remaining challenges surrounding dynamic consent. Conclusions Dynamic consent emerges as an ethically advantageous method for digital health ecosystems, driven by its adaptability and support for continuous, two-way communication between data subjects and consumers. Ethical implementation in real-world settings requires the development of a robust technical framework capable of accommodating the diverse needs of stakeholders, thereby ensuring ethical integrity and data privacy in the evolving digital health landscape. (shrink)

Definition of the problemHealth Apps are becoming increasingly important for a preventive and responsible orientation of the health system. Currently, most of these digital health applications (DiGA) are based on so-called self-tracking technologies which record physiological and psychological data via sensors, usually combined with personalized everyday information. In the last few years, these digital developments have launched an intense and clearly polarized debate about the opportunities and dangers of self-tracking in healthcare.ArgumentsAfter a brief overview of (...) medical self-tracking, this essay wants to systematize and check the polarized discourse on the basis of its decisive individual and social potentials. It turns out that self-measurement techniques have long been an integral part of medical practice in diagnostics and therapy.ConclusionThe area of tension between individual empowerment and potential loss of control by the users will be emphasized as being especially important for the implementation of health Apps in primary health care. Finally, possible implications for the current design of the new German Digital Care Law (Digitale-Versorgung-Gesetz) are shown and some existing “blind spots” are highlighted. (shrink)

Common mental health disorders are rising globally, creating a strain on public healthcare systems. This has led to a renewed interest in the role that digital technologies may have for improving mental health outcomes. One result of this interest is the development and use of artificial intelligence for assessing, diagnosing, and treating mental health issues, which we refer to as ‘digital psychiatry’. This article focuses on the increasing use of digital psychiatry outside of (...) clinical settings, in the following sectors: education, employment, financial services, social media, and the digital well-being industry. We analyse the ethical risks of deploying digital psychiatry in these sectors, emphasising key problems and opportunities for public health, and offer recommendations for protecting and promoting public health and well-being in information societies. (shrink)

How do we respect the legitimate privacy interests of individuals and communities about whom data relate while maximizing data’s utility as a fundamental resource? Pyrrho, Cambraia and de Vasconcel...

While the implementation of digital technology in psychiatry appears promising, there is an urgent need to address the implications of the absence of ethical design in the early development of such technologies. Some authors have noted the gap between technology development and ethical analysis and have called for an upstream examination of the ethical issues raised by digital technologies. In this paper, we address this suggestion, particularly in relation to digital healthcare technologies for patients (...) with schizophrenia spectrum disorders. The introduction of digital technologies in psychiatry offers a broad spectrum of diagnostic and treatment options tailored to the health needs and goals of patients’ care. These technologies include wearable devices, smartphone applications for high-immersive virtual realities, smart homes, telepsychiatry and messaging systems for patients in rural areas. The availability of these technologies could increase access to mental health services and improve the diagnostics of mental disorders.Additional Instruction AbstractIn this descriptive review, we systematize ethical concerns about digital technologies for mental health with a particular focus on individuals suffering from schizophrenia. There are many unsolved dilemmas and conflicts of interest in the implementation of these technologies, such as (1) the lack of evidence on efficacy and impact on self-perception; (2) the lack of clear standards for the safety of their daily implementation; (3) unclear roles of technology and a shift in the responsibilities of all parties; (4) no guarantee of data confidentiality; and (5) the lack of a user-centered design that meets the particular needs of patients with schizophrenia. mHealth can improve care in psychiatry and make mental healthcare services more efficient and personalized while destigmatizing mental health disorders. To ensure that these technologies will benefit people with mental health disorders, we need to heighten sensitivity to ethical issues among mental healthcare specialists, health policy makers, software developers, patients themselves and their proxies. Additionally, we need to develop frameworks for furthering sustainable development in the digital technologies industry and for the responsible usage of such technologies for patients with schizophrenia in the clinical setting. We suggest that digital technology in psychiatry, particularly for schizophrenia and other serious mental health disorders, should be integrated into treatment with professional supervision rather than as a self-treatment tool. (shrink)

Digital twins for health care have the potential to significantly impact the provision of medical services. In addition to possible use in care, this technology could serve as a conduit by which no...

Digitalization and the development of Artificial Intelligence (AI) will bring about substantial changes in all aspects of life. This happens in a world marked by the poisonous synergy of five Ps, polarization, populism, protectionism, post‐truth, patriarchy, as well as an ambiguous interplay of secularization and new visibility of religion.If development of AI is to be beneficial for people and planet a number of challenges must be met. In this regard, religion‐and‐science dialogue needs improvement in making things not only intellectually but (...) also spiritually fit. Ethics should be involved from the beginning rather than being called upon first when problems arise. Faith communities have a prophetical, diaconal, ethical, and theological role.Based on the characterization of life as a fourfold web of relationality, personal, social, political, as well as global issues are identified and discussed. These include mental health disorders, addiction, manipulation, and self‐exploitation. Reflections on leadership suggest resilience, coexistence, and hope as theological key components for navigating the uncharted realms of the digital age. (shrink)

Mobile applications (apps) have gained significant popularity as a new intervention strategy responding to violence against women and girls. Despite their growing relevance, an assessment from the perspective of public health ethics is still lacking. Here, we base our discussion on the understanding of violence against women and girls as a multidimensional, global public health issue on structural, societal and individual levels and situate it within the theoretical framework of structural injustice, including epistemic injustice. Based on a systematic (...) app review we previously conducted, we evaluate the content and functions of apps through the lens of structural injustice. We argue that technological solutions such as apps may be a useful tool in the fight against violence against women and girls but have to be situated within the broader frame of public health that considers the structural dimensions of such violence. Ultimately, the concerns raised by structural injustice are—alongside key concerns of safety, data privacy, importance of human supportive contact, and so forth—crucial dimensions in the ethical assessment of such apps. However, research on the role and relevance of apps as strategies to address the structural and epistemic dimensions of violence remains scarce. This article aims to provide a foundation for further discussion in this area and could be applicable to other areas in public health policy and practice. (shrink)

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 advantage these actors have accrued in the sphere of the production of digital goods provides them with 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 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. (shrink)

Information and computer technology has come to play an increasingly important role in medicine, to the extent that e-health has been described as a disruptive innovation or revolution in healthcare. The attention is very much focused on the technology itself, and advances that have been made in genetics and biology. This leads to the question: What is changing in medicine today concerning e-health? To what degree could these changes be characterized as a ‘revolution’? We will apply the work (...) of Thomas Kuhn, Larry Laudan, Michel Foucault and other philosophers—which offers an alternative understanding of progress and revolution in medicine to the classic discovery-oriented approach—to our analysis. Nowadays, the long-standing curative or reactive paradigm in medicine is facing a crisis due to an aging population, a significant increase in chronic diseases and the development of more expensive diagnostic tools and therapies. This promotes the evolution towards a new paradigm with an emphasis on preventive medicine. E-health constitutes an essential part of this new paradigm that seeks to solve the challenges presented by an aging population, skyrocketing costs and so forth. Our approach changes the focus from the technology itself toward the underlying paradigm shift in medicine. We will discuss the relevance of this approach by applying it to the surge in digital self-tracking through health apps and wearables: the recognition of the underlying paradigm shift leads to a more comprehensive understanding of self-tracking than a solely discovery-oriented or technology-focused view can provide. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 20 Heft: 1 Seiten: 293-302.

Digital twinning in medicine refers to the idea of simulating a person’s organs, muscles or perhaps their entire body, in order to arrive more effectively at accurate diagnoses, to make treatment recommendations that reflect chances of success and possible side-effects, and to better understand the long-term trajectory of an individual’s overall condition. Digital twins, in these ways, build on the recent movement toward personalised medicine,1 and they undoubtedly present us with exciting opportunities to advance our health. Of (...) course, the opportunities are accompanied by newfound challenges—a common refrain in discussions surrounding emerging technologies. In a recent article, Matthias Braun surveys numerous problems, including the precision of simulations, ownership and consent to the use of digital models, and issues of justice in assuring equitable access to novel medical systems.2 In particular, he places special emphasis on the notion of representation. According to Braun, proper representation naturally calls for correspondence—namely a precise model offering dynamic, real-time feedback as well as transparency, both for the patient and the practitioner, in terms of the data being employed. While technical challenges remain, these goals are quite clear and relatively uncontroversial. Where a host of questions arise, however, is in the discussion on the interaction between the represented persons and their simulations. Alongside questions regarding ownership of one’s digital twin, Braun raises the concern that ‘giving …. (shrink)

The COVID-19 pandemic has brought the long-standing public health practice of contact tracing into the public spotlight. While contact tracing and case investigation have been carefully designed to protect privacy, the huge volume of tracing which is being carried out as part of the pandemic response in the United States is highlighting potential concerns around privacy, legality, and equity. Contact tracing during the pandemic has gained particular attention for the new use of digital technologies—both on the consumer (...) side in the form of Exposure Notification applications, and for public health agencies as digital case management software systems enable massive scaling of operations. While the consumer application side of digital innovation has dominated the news and academic discourse around privacy, people are likely to interact more intensively with public health agencies and their use of digital case management systems. Effective use of digital case management for contact tracing requires revisiting the existing legal frameworks, privacy protections, and security practices for management of sensitive health data. The scale of these tools and demands of an unprecedented pandemic response are introducing new risks through the collection of huge volumes of data, and expanding requirements for more adept data sharing among jurisdictions. Public health agencies must strengthen their best practices for data collection and protection even in the absence of comprehensive or clear guidance. This requires navigating a difficult balance between rigorous data protection and remaining highly adaptive and agile. (shrink)

This book highlights both the relation between technology and care, and the normative aspects of economic analyses in health care. A series of concrete examples from various clinical fields (prenatal diagnosis, genetic tests, digital imaging in psychiatry, tube feeding in care for the elderly, and palliative sedation) helps the authors to consider how to integrate these technologies in a care context aimed upon humaneness. Each topic is analysed by leading European clinicians and health care ethicists.

Innovation is progressively needed in responding to global challenges. Moreover, the increasing complexity of challenges implies demand for the usage of multisectoral and policy mix approaches. Wicked problems can be tackled by "integrated innovation" that combines the coordinated implementation of social, technological, and health innovation co-created by entities of the public sector, the private sector, the non-governmental sector, and the informal sector. This Research Topic focuses on filling the knowledge gaps about the selected types of innovation. First, regarding social (...) innovation that can be understood as new strategies, concepts, products, services, and organizational forms that allow the satisfaction of human needs. Second, a technological innovation that refers to new or remarkably improved products, goods, or services in terms of their technical specifications, components, materials, software, design, or other functional features. Third, health innovation that focuses on novel or enhanced health policies, systems, products, technologies, services, and care delivery schemes to improve people’s health. Finally, this Research Topic highlights attempts to develop integrated innovation that can add value to social policy, health policy, and environmental policy by improving efficiency, effectiveness, quality, sustainability, safety, and affordability. (shrink)

Digital health and welfare technologies and artificial intelligence are proposed to revolutionise healthcare systems around the world by enabling new models of care. Digital health and welfare technologies enable remote monitoring and treatments, and artificial intelligence is proposed as a means of prediction instead of reaction to individuals’ health and as an enabler of proactive care and rehabilitation. The digital transformation not only affects hospital and primary care but also how the community (...) meets older people's needs. Community care is often provided by informal and formal care‐givers, most of whom are women. Gender equality is at the heart of many national strategies, but do all genders have equal rights, responsibilities and opportunities when it comes to community care and its digital transformation? The digital transformation of community care is entangled with how care is provided to older people and the working conditions of community‐care professionals. Current and, even more so, future community‐care systems are and will be partly constituted by networks of technological artefacts. These health and welfare technological artefacts and the discourse surrounding them mediate and constitute social relations and community care. This article looks into how health and welfare technology and artificial intelligence‐based devices and systems mediate and constitute gender relations in community care and presents an argument for reflexivity, embodiment, pluralism, participation and ecology as an alternative strategy to treating community care as one‐size‐fit‐all and being blind to gender‐related issues. (shrink)

Mobile phone-based applications (apps) can promote faster targeted actions to control COVID-19. However, digital contact tracing systems raise concerns about data security, system effectiveness, and their potential to normalise privacy-invasive surveillance technologies. In the absence of mandates, public uptake depends on the acceptability and perceived legitimacy of using technologies that log interactions between individuals to build public health capacity. We report on six online deliberative workshops convened in New South Wales to consider the appropriateness of using (...) the COVIDSafe app to enhance Australian contact tracing systems. All groups took the position (by majority) that the protections enacted in the app design and supporting legislation were appropriate. This support is contingent on several system attributes including: the voluntariness of the COVIDSafe app; that the system relies on proximity rather than location tracking; and, that data access is restricted to local public health practitioners undertaking contact tracing. Despite sustained scepticism in media coverage, there was an underlying willingness to trust Australian governing institutions such that in principle acceptance of the new contact tracing technology was easy to obtain. However, tensions between the need to prove system effectiveness through operational transparency and requirements for privacy protections could be limiting public uptake. Our study shows that informed citizens are willing to trade their privacy for common goods such as COVID-19 suppression. But low case numbers and cautionary public discourses can make trustworthiness difficult to establish because some will only do so when it can be demonstrated that the benefits justify the costs to individuals. (shrink)

At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly (...) informing users of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are “privacy preserving by design”. We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies. (shrink)

Contemporary infectious disease surveillance systems aim to employ the speed and scope of big data in an attempt to provide global health security. Both shifts - the perception of health problems through the framework of global health security and the corresponding technological approaches – imply epistemological changes, methodological ambivalences as well as manifold societal effects. Bringing current findings from social sciences and public health praxis into a dialogue, this conversation style contribution points out several broader implications (...) of changing disease surveillance. The conversation covers epidemiological issues such as the shift from expert knowledge to algorithmic knowledge, the securitization of global health, and the construction of new kinds of threats. Those developments are detailed and discussed in their impacts for health provision in a broader sense. (shrink)

ABSTRACT Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants who completed a survey approximately one month earlier. Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to (...) share data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information. (shrink)

Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with (...) an ensuing increased tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)