Through this contribution I aim to explore the horizons and limits of digital medicine in light of an embodied approach to the issue of care. I will sketch the historical background of digital medicine and show the contemporary status of this interdisciplinary field, as well as its applications and outcomes. Then, I will address a critique of the computational theory of mind (CTM) upon which many contemporary mental health apps are designed. This approach to the mind (...) is inscribed into the modern trend of neuromania, which conceives the embodied, living human being as a mere series of data analyses and algorithms, with the brain as the seat of the person. Drawing on continental philosophy and classical phenomenology I will develop a notion of health conceived as a moral enterprise, showing how wellbeing and vitality are not reducible to a product made by technologies or doctors, but rather they are the results of an embodied encounter. As such, empathy and person-centered care cannot be achieved by digital medicine. They are the result of a journey into the regions of recognition, embodied presence and the aliveness constituting the person. Finally, I will show how the issue of care cannot be separated from an embodied encounter between people, especially in case of dementia. (shrink)

Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device (...) dependability. For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care. (shrink)

This paper focuses on the importance of digital communication between medical teams and patients and their families when mediated by technological tools. Medicine is changing following the fourth industrial (the digital) revolution: from CAT scans, to X-rays, to UV radiation, to electronic records, to treatment tracking apps, to telemedicine, and the use of AI in doctors' decision-making processes. The COVID-19 pandemic highlighted both the fruitful and problematic sides of this medical evolution. Digital tools such as tablets, (...) smartphones, and video calling apps proved to be essential. Accordingly, I analyze three cases that reveal the helpfulness and the limitations of new communication technologies: on physicians and non-hospitalized patients, on families and patients, and on healthcare professionals and patients' families. Since the medical relationship is not only clinical but also relational and human, one must pay attention to the communicative dimensions of it to remain at least partly _human-e_. (shrink)

Klugman et al. (2018) describe how new medical devices track treatment adherence more accurately than a clinician relying on his or her patient’s self-report. For example, these devices promise to...

Digital medicine—a drug delivered with an ingestion sensor and related data collection system—has potential clinical value, especially for people whose lives are made more disorganized by poverty-related stress. It would be unjust if poor people were effectively barred from this treatment modality. Yet, unless a concerted effort is made to enable access through provision of smartphones to those who cannot afford them, this injustice will aggravate the digital divide in clinical care.

Precision medicine and digital phenotyping are two prominent data-based approaches within digital medicine. While precision medicine historically used primarily genetic data to find targeted treatment options, digital phenotyping relies on the usage of big data deriving from digital devices such as smartphones, wearables and other connected devices. This paper first focusses on the aspect of data type to explore differences and similarities between precision medicine and digital phenotyping. It outlines different ways (...) of data collection and production and the consequences thereof. Second, it shows how these sorts of data influence dominant beliefs in the field: The field of precision medicine relying on the dominant understanding of ‘genetic determinism’ imported from genetics, digital phenotyping building on the logic of ‘data fundamentalism’. In the end, the analysis shows how digital data informs potentials as well as challenges of precision medicine and digital phenotyping: a better health care for individuals connected with individualisation and responsibilisation for all, with a prognosed shift from reactive to preventive medicine. Additionally, data-based approaches might facilitate epistemological and ontological redirections for the whole field of medicine that will also affect knowledge production and a reassessment of the value of different types of knowledge with all its consequences. Institutionally, it might lead to shifts in distribution of power to experts in big data related technologies, i.e. private companies. (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)

This perspective article explores the use of digital twins (DTs) in medicine, highlighting its capacity to simulate risks and personalize treatments while examining the emerging bioethical concerns. Central concerns include power dynamics, exclusion, and misrepresentation. We propose adopting a relational bioethical approach that advocates for a comprehensive assessment of DTs in medicine, extending beyond individual interactions to consider broader structural relations and varying levels of access to power. This can be achieved through two key relational recommendations: acknowledging (...) the impact of uneven relational structures on access to medical care and promoting social justice by evaluating resource allocation. While DTs in medicine offer promising advancements, a relational bioethical lens may provide a nuanced understanding, fostering equitable, inclusive and responsible integration of DTs into medical practice. (shrink)

In his Feature Article ‘Represent me: please: Towards an ethics of digital twins in medicine’1, Mattias Braun considers several important bioethical issues in relation to the use of digital twin simulations in health and medical contexts. He focuses on the ways these simulations are used or are proposed to be deployed in these domains, including to what extent they are a ‘true’ or ‘real’ representation of human bodies. In this response, I want to take a step back (...) and delve into the metaphor of the ‘digital twin’. I consider the implications of using this metaphor in the context of medical care and how this choice of language participates in what science and technology scholars term the ‘sociomaterial imaginaries’ that are used to support and promote novel technologies.2 Language is important. It matters. The choice of language is both symbolic and persuasive. It intervenes in political and policy debates and research and healthcare funding decisions.2 It has material effects and affects: to some of which Braun has gestured in his piece. The …. (shrink)

Digital Health Technologies (DHTs) are currently the subject of much debate both in terms of their technological frontiers as well as their ethical, legal and societal implications (ELSI). Regulation of such technologies as medical devices currently lacks behind their level of adoption. Digital Twins are the next evolution step of such DHTs and provide an opportunity to anticipate and act on ELSI before adoption again leaps before the necessary review. This paper introduces the concept and use cases of (...) digital twins in medicine, then frames the debate through the lens of related technologies, machine learning and personalized medicine, and maps ethical challenges stemming from those. Finally, we lay out how digital twins may change and challenge the future practice of medicine. (shrink)

Simulations are used in very different contexts and for very different purposes. An emerging development is the possibility of using simulations to obtain a more or less representative reproduction of organs or even entire persons. Such simulations are framed and discussed using the term ‘digital twin’. This paper unpacks and scrutinises the current use of such digital twins in medicine and the ideas embedded in this practice. First, the paper maps the different types of digital twins. (...) A special focus is put on the concrete challenges inherent in the interactions between persons and their digital twin. Second, the paper addresses the questions of how far a digital twin can represent a person and what the consequences of this may be. Against the background of these two analytical steps, the paper defines first conditions for digital twins to take on an ethically justifiable form of representation. (shrink)

Digital Pills are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patients’ physiological data. Although DP are a promising innovation in the field of digital medicine, their use has also raised a number of ethical concerns. These ethical concerns, however, have been expressed principally from a theoretical perspective, whereas an ethical analysis with a more empirically oriented approach is lacking. There is (...) also a lack of clarity about the empirical evidence available concerning the application of this innovative digital medicine. To map the studies where DP have been tested on patients and discuss the ethically relevant issues evident therein, we performed a scoping review of the empirical literature concerning DP. Our search allowed us to identify 18 papers reporting on studies where DP were tested on patients. These included studies with different designs and involving patients with a variety of conditions. In the empirical literature, a number of issues with ethical relevance were evident. At the patient level, the ethical issues include users’ interaction with DP, personal sphere, health-related risks and patients’ benefits. At the provider level, ethically relevant issues touch upon the doctor-patient relationship and the question of data access. At the societal level, they concern the benefits to society, the quality of evidence and the dichotomy device-medicine. We conclude that evidence concerning DP is not robust and that more research should be performed and study results made available to evaluate this digital medicine. Moreover, our analysis of the ethically relevant aspects within empirical literature underscores that there are concrete and specific open questions that should be tackled in the ethical discussion about this new technological solution. (shrink)

The concept of the digital phenotype has been used to refer to digital data prognostic or diagnostic of disease conditions. Medical conditions may be inferred from the time pattern in an insomniac’s tweets, the Facebook posts of a depressed individual, or the web searches of a hypochondriac. This paper conceptualizes digital data as an extended phenotype of humans, that is as digital information produced by humans and affecting human behavior and culture. It argues that there are (...) ethical obligations to persons affected by generalizable knowledge of a digital phenotype, not only those who are personally identifiable or involved in data generation. This claim is illustrated by considering the health-related digital phenotypes of precision medicine and digital epidemiology. (shrink)

Matthias Braun’s1 concise reflections on the ethical challenges posed by digital twins in medicine are briefly supplemented below by a thought that, in my view, seems to run through the text like a thread, but whose ethical implications are not explicitly stated. Braun states in the final paragraph that ‘digital twins do not fundamentally threaten the embodied person’, at least not as long as the person in question has ‘control over her simulated representation’. I agree with this, (...) but would like to point out that it is not just the embodied person who has control. Regardless of whether the person embodied by the digital twin has permanent control over it, which enables them to revoke their agreed representation at any time, the company that developed or uses the digital twin also has control over it. The control of the company or companies and other involved parties lies in the fact that data and information are …. (shrink)

This article examines how digital epidemiology and eHealth coalesce into a powerful health surveillance system that fundamentally changes present notions of body and health. In the age of Big Data and Quantified Self, the conceptual and practical distinctions between individual and population body, personal and public health, surveillance and health care are diminishing. Expanding on Armstrong’s concept of “surveillance medicine” to “quantified self medicine” and drawing on my own research on the symbolic power of statistical constructs in (...) medical encounters, this article explores the impact of digital health surveillance on people’s perceptions, actions and subjectivities. It discusses the epistemic confusions and paradoxes produced by a health care system that increasingly treats patients as risk profiles and prompts them to do the same, namely to perceive and manage themselves as a bundle of health and security risks. Since these risks are necessarily constructed in reference to epidemiological data that postulate a statistical gaze, they also construct or make-up disembodied “individuals on alert”. (shrink)

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)

Chondrogenesis is a key process in skeletogenesis since endochondral ossification requires the formation of a cartilaginous template. Knowledge of molecular mechanisms regulating chondrogenesis is extremely valuable not only to understand many human disorders but also in regenerative medicine. Embryonic skeletogenesis is an excellent model to study this mechanism. Most cartilages share the cellular basis underlying chondrogenesis but the high heterogeneity in morphologies of the different skeletal elements appears to be generated by differential participation of a variety of chondrogenic signals. (...) Here we overview the regulatory factors responsible for chondrogenesis concluding that early chondrogenic signals for the digit cartilages differ from those implicated in the formation of other axial and appendicular skeletal components. BioEssays 29:725–737, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

The online space has become a digital public square, where individuals interact and share ideas on the most trivial to the most serious of matters, including discussions of controversial ethical issues in science, technology and medicine. In the last decade, new disciplines like computational social science and social data science have created methods to collect and analyse such data that have considerably expanded the scope of social science research. Empirical bioethics can benefit from the integration of such (...) class='Hi'>digital methods to investigate novel digital phenomena and trace how bioethical issues take shape online.Here, using concrete examples, we demonstrate how novel methods based on digital approaches in the social sciences can be used effectively in the domain of bioethics. We show that a digital turn in bioethics research aligns with the established aims of empirical bioethics, integrating with normative analysis and expanding the scope of the discipline, thus offering ways to reinforce the capacity of bioethics to tackle the increasing complexity of present-day ethical issues in science and technology. We propose to call this domain of research in bioethicsdigital bioethics. (shrink)

The COVID-19 pandemic has catalysed what may soon become a permanent digital transition in the domains of work, education, medicine, and leisure. This transition has also precipitated a spike in concern regarding our digital well-being. Prominent lobbying groups, such as the Center for Humane Technology, have responded to this concern. In April 2020, the CHT has offered a set of ‘Digital Well-Being Guidelines during the COVID-19 Pandemic.’ These guidelines offer a rule-based approach to digital well-being, (...) one which aims to mitigate the effects of moving much of our lives online. The CHT’s guidelines follow much recent interest in digital well-being in the last decade. Ethicists of technology have recently argued that character-based strategies and redesigning of online architecture have the potential to promote the digital well-being of online technology users. In this article, I evaluate the CHT’s rule-based approach, comparing it with character-based strategies and approaches to redesigning online architecture. I argue that all these approaches have some merit, but that each needs to contribute to an integrated approach to digital well-being in order to surmount the challenges of a post-COVID world in which we may well spend much of our lives online. (shrink)

Cho and Martinez-Martin’s (2023) “Epistemic rights and responsibilities of digital simulacra for biomedicine” presents a comprehensive overview of big data and AI in clinical medicine and research....

Proponents of precision medicine envision that digital phenotyping can enable more individualized strategies to manage current and future health conditions. We problematize the interpretation of digital phenotypes as straightforward representations of individuals through examples of what we call data inheritance. Rather than being a digital copy of a presumed original, digital phenotypes are shaped by larger data collectives that precede and continuously change how the individual is represented. We contend that looking beyond the individual is (...) crucial for understanding the factors that can ‘bend’ digital mirrors in specific directions. Since algorithms used for digital profiling are based on historical data, their predictions often inherit and increase the values and perspectives of past data practices. Moreover, the data legacies we leave behind today may return as so-called ‘data phantoms’ that conflict with the interests of the individual and contest who and what the ‘original’ is. (shrink)

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment (...) preferences, which can be instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry. (shrink)

When President Obama laid out his vision for the U.S. Precision Medicine Initiative in a 2016 Boston Globe op‐ed, he cautioned, “[I]t only works if we collect enough information first.” “Collecting information” is an apt way to describe the subject of both books reviewed here. Jenny Reardon's The Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome traces the history of the Human Genome Project and efforts around the globe to obtain blood samples to extract not only genetic data (...) but also meaning from them. Barbara Prainsack's Personalized Medicine: Empowered Patients in the 21st Century? concerns the capture of digital, quantifiable, and computable information about nearly all aspects of people's lives in the pursuit of personalized medicine. Reardon and Prainsack critique scientists’ and corporations’ appeals to liberal democracy, justice, and empowerment to collect more and more information about people. They reveal the limitations and frequent superficiality of those appeals and remind us that person‐centric ethics rather than data‐centric research is needed to realize a more democratic, just, and empowered society. (shrink)

The development of artificial intelligence (AI) in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders, such as depression, by using data from social media. These AI depression detectors (AIDDs) identify users who are at risk of depression prior to any contact with the healthcare system. The article focuses on the ethical implications of AIDDs regarding affected users’ health-related autonomy. Firstly, it presents the (ethical) discussion of (...) AI in medicine and, specifically, in mental health. Secondly, two models of AIDDs using social media data and different usage scenarios are introduced. Thirdly, the concept of patient autonomy, according to Beauchamp and Childress, is critically discussed. Since this concept does not encompass the specific challenges linked with the digital context of AIDDs in social media sufficiently, the current analysis suggests, finally, an extended concept of health-related digital autonomy. (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)

Background: The concept of digital twins has great potential for transforming the existing health care system by making it more personalized. As a convergence of health care, artificial intelligence, and information and communication technologies, personalized health care services that are developed under the concept of digital twins raise a myriad of ethical issues. Although some of the ethical issues are known to researchers working on digital health and personalized medicine, currently, there is no comprehensive review that (...) maps the major ethical risks of digital twins for personalized health care services. Objective: This study aims to fill the research gap by identifying the major ethical risks of digital twins for personalized health care services. We first propose a working definition for digital twins for personalized health care services to facilitate future discussions on the ethical issues related to these emerging digital health services. We then develop a process-oriented ethical map to identify the major ethical risks in each of the different data processing phases. Methods: We resorted to the literature on eHealth, personalized medicine, precision medicine, and information engineering to identify potential issues and developed a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. Developers of a digital twin for personalized health care service may use this map to identify ethical risks during the development stage in a more systematic way and can proactively address them. Results: This paper provides a working definition of digital twins for personalized health care services by identifying 3 features that distinguish the new application from other eHealth services. On the basis of the working definition, this paper further layouts 10 major operational problems and the corresponding ethical risks. Conclusions: It is challenging to address all the major ethical risks that a digital twin for a personalized health care service might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist the developers of digital twins for personalized health care services in analyzing ethical risks in a more systematic manner. (shrink)

Throughout the 20th century, philosophers have criticized the scientific understanding of the human body. Instead of presenting the body as a meaningful unity or Gestalt, it is regarded as a complex mechanism and described in quasi-mechanistic terms. In a phenomenological approach, a more intimate experience of the body is presented. This approach, however, is questioned by Jacques Lacan. According to Lacan, three basic possibilities of experiencing the body are to be distinguished: the symbolical (or scientific) body, the imaginary (or ideal) (...) body and the real body. Whereas the symbolical body is increasingly objectified (and even digitalized) by medical science, the phenomenological perception amounts to an idealization of the body. The real body cannot be perceived immediately. Rather, it emerges in the folds and margins of our efforts to symbolize or idealize the body, which are bound to remain incomplete and fragile. In the first part of the article (§1-§3), Lacan's conceptual distinction between the symbolical, the imaginary and the real body will be explained. In the second part (§4-§5), this distinction will be further clarified by relying on crucial chapters in the history of anatomy (notably Mundinus, Vesalius, Da Vinci and Descartes). (shrink)

Throughout the 20th century, philosophers have criticized the scientific understanding of the human body. Instead of presenting the body as a meaningful unity or Gestalt, it is regarded as a complex mechanism and described in quasi-mechanistic terms. In a phenomenological approach, a more intimate experience of the body is presented. This approach, however, is questioned by Jacques Lacan. According to Lacan, three basic possibilities of experiencing the body are to be distinguished: the symbolical (or scientific) body, the imaginary (or ideal) (...) body and the real body. Whereas the symbolical body is increasingly objectified (and even digitalized) by medical science, the phenomenological perception amounts to an idealization of the body. The real body cannot be perceived immediately. Rather, it emerges in the folds and margins of our efforts to symbolize or idealize the body, which are bound to remain incomplete and fragile. In the first part of the article (1-3), Lacan's conceptual distinction between the symbolical, the imaginary and the real body will be explained. In the second part (4-5), this distinction will be further clarified by relying on crucial chapters in the history of anatomy (notably Mundinus, Vesalius, Da Vinci and Descartes). (shrink)

Definition of the problem Refugees show a high prevalence of mental health burden. Catering to the need for mental health services is made difficult by access barriers. These barriers consist of structural factors as well as culturally different attitudes towards mental health, mental illness, and therapeutic interventions. One option to overcome these access barriers and to provide mental healthcare services in an appropriate manner is seen in digital interventions. In the form of interactive websites or smartphone apps, these interventions (...) have proven to be effective in mental healthcare. There are also promising examples of successful use of these technologies with refugees. However, the ethical aspects of digital interventions for refugees have scarcely been studied yet. Arguments Aim of this paper is to tackle this research desiderate. The instrument of the ethical analysis to be conducted is the concept of agency. According to the concept of agency, persons have to be seen as actors capable of acting based on their own resources and competencies. Agency is the guiding principle here for analyzing the opportunities and risks of digital interventions for refugees. In addition, I will attempt to point out prospects for an agency-based application of digital interventions. Conclusion The ethical analysis could be used as the blueprint for developing therapeutic concepts that contribute to the improvement of mental healthcare services for refugees from an ethical perspective. (shrink)

This article explores the ways in which predictive information technologies are used in the field of personalized medicine and the relations between this use and how patients and disease are perceived. This is examined in a qualitative case study of a personalized cancer clinical trial, where oncologists made clinical decisions for each patient based on drug matchings and efficacy predictions produced by bioinformatic technologies and algorithms. I focus on personalized practice itself, as a postgenomic phenomenon, rather than on epistemic, (...) ethical and institutional critiques. Personalized medicine aims to process molecular, clinical, environmental and social data into individually tailored decisions. In this case, however, the engagement of clinicians with data and digital artefacts that processed multiple information sources resulted in treatment choices that were paradoxically both immutable and uncertain. In contrast to the situatedness of the body in postgenomics, this practice subverted the personalized medical approach while decontextualizing both cancer and patients. (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)

In the management of the Covid 19 crisis, digital technologies were used in a major way. This article defends the hypothesis that these technologies took the form of a “tacit social experimentation”. This article justifies this concept in three levels. The first part uses this concept to qualify the form of biopolitics that was implemented to manage the crisis. Digital technologies were used to discipline the population and, literally speaking, as instruments of knowledge of the population. Uncertainty forced (...) experts to make preliminary observations and act to produce knowledge. Second, this article shows that the use of digital technologies during the crisis was experimental in a second sense. By promoting telemedicine within a more flexible legal framework, the authorities authorised an experimental use of telemedicine without knowledge or control of its side effects. Finally, the article defends the use of the concept of “tacit social experimentation” for ethical and political purposes. For indeed, understanding the experiments carried out during the crisis begs the question of the involvement of the participants and their democratic steering. (shrink)

The concept of a digital twin comes from engineering.1 It refers to a digital model of an artefact in the real world, which takes data about the artefact itself, data about other such artefacts, among other things, as inputs. The idea is that the maintenance of artefacts—such as jet engines—can be vastly improved if we work with digital twins that simulate actual objects. Similarly, personalised medicine might benefit from the digital modelling of body parts or (...) even whole human bodies. A medical digital twin could use data about the patient, more general population data, and other inputs to generate predictions about the patient. This could lead to highly personalised interventions and nuanced judgments about the patient’s health. Matthias Braun2 discusses this intriguing prospect, asking how we should think about the way in which a digital twin could represent a patient. I will respond to Braun’s striking suggestion that we can regard a digital twin as an extension of the patient’s body. Notably, Braun does not compare his just-mentioned idea with the extended mind thesis popularised by Andy Clark and David Chalmers.3 But I am sure many readers will be reminded of the extended mind thesis. Accordingly, I will consider this comparison. I cannot discuss this comparison in detail, nor fully evaluate Braun’s suggestion. But I can say something about how we might approach this comparison, and provide some …. (shrink)

In the article ‘Represent Me: Please! Towards an Ethics of Digital Twins in Medicine’, I analysed and tried to better understand the main ethical challenges associated with Digital Twins. For those who are just entering the debate with this article: DT is a metaphor for a bundle of artificial intelligence driven simulation technologies that constantly, in real time and ad personam simulate single or multiple parts of the body and make predictions about future health states based on (...) these simulations. My argument addresses the need to look at the breadth of challenges through a perspective of representation. From such a take, key consequences can be drawn for the further development of such technologies, the required means of control and not least the way to think about the interaction between humans and ‘their’ simulations. I am very grateful for the subsequent suggestions, criticisms and further arguments, which have helped me to elaborate my arguments more clearly and have led to a substantial advancement of the debate and the discussion about ethical questions in dealing with DT. Jenny Blumenthal-Barby,1 Deborah Lupton,2 Jenny Krutzinna,3 Janina Loh,4 Brent Mittelstadt,5 Sven Nyholm,6 Daniel Tigard7 and Max Tretter8 have made excellent points, which, in the following, I will not be able to reply to individually and in detail. In this response, I will try to bundle the open points and questions along the comments and considerations mentioned above and attempt to outline their significance for an ethics of DT. Four challenges seem to be central. A first point addresses anthropological issues. It is concerned …. (shrink)

In his contribution, ‘Represent me: please! Towards an ethics of digital twins in medicine’1, Braun shows that there is a fundamental ambivalence inherent in digital twins: they can either open up new freedoms for the simulated persons, or, conversely, endanger and restrict their freedom. To prevent digital twins from restricting people’s freedom, Braun suggests a strong focus on control. Braun’s focus on control is insufficient, I will argue, because his idea of control works only retroactively: it (...) can only react to restrictions of freedom that have already occurred, but it cannot prevent them, nor can it restore any lost freedom. Control is therefore insufficient to defend people’s freedom. To prove my claim, I will first use an everyday example to illustrate the fundamental ambivalence inherent in digital twins. Second, I will show that digital twins endanger people’s freedom in a hermeneutic way. Finally, I will demonstrate why controllability cannot prevent this hermeneutic endangerment. I understand digital twins, like Braun, as simulation of a person, as their dynamic and precise effigy. Simulated twins use machine-learning and artificial intelligence capabilities to make predictive analyses about the simulated person and the future development of her health. Imagine: You are eating dinner. Meanwhile, your partner lectures you about the calorie density and nutrient composition of your food, warns you that your portion size exceeds your daily calorie requirement by x calories. It calculates how your dinner will negatively impact your body mass index and physical fitness, and predicts what the consequences will be for your overall health. Based on these data and predictions, it creates an individualised diet plan for you—and at the same time shows you by how much you could improve your vital values by sticking to that plan. This example helps to illustrate the fundamental …. (shrink)

Global lockdowns during the COVID-19 pandemic have offered many people first-hand experience of how their daily online activities threaten their digital well-being. This article begins by critically evaluating the current approaches to digital well-being offered by ethicists of technology, NGOs, and social media corporations. My aim is to explain why digital well-being needs to be reimagined within a new conceptual paradigm. After this, I lay the foundations for such an alternative approach, one that shows how current (...) class='Hi'>digital well-being initiatives can be designed in more insightful ways. This new conceptual framework aims to transform how philosophers of technology think about this topic, as well as offering social media corporations practical ways to design their technologies in ways that will improve the digital well-being of users. (shrink)

The last decade has seen rise in technologies that allow humans to send and receive intimate touch across long distances. Drawing together platform studies, digital intimacy studies, phenomenology of touch, and ethics of technology, we argue that these new haptic communication devices require specific ethical consideration of consent. The paper describes several technologies, including Kiiroo teledildonics, the Kissenger, the Apple Watch, and Hey Bracelet, highlighting how the sense of touch is used in marketing to evoke a feeling of connection (...) within the digital sphere. We then discuss the ambiguity of skin-to-skin touch and how it is further complicated in digital touch by remediation through platforms, companies, developers, manufacturers, cloud storage sites, the collection and use of data, research, satellites, and the internet. Lastly, we raise concerns about how consent of data collection and physical consent between users will be determined, draw on examples in virtual reality and sex-robotics, and ultimately arguing for further interdisciplinary research into this area. (shrink)

Both a significant body of literature and the case study presented here show that digital knowledge repositories struggle to attract the needed level of data and knowledge contribution that they need to be successful. This happens also to high profile and prestigious initiatives. The paper argues that the reluctance of researchers to contribute can only be understood in light of the highly competitive context in which research careers need to be built nowadays and how this affects researchers’ quality of (...) life. Competition and managerialism limit the discretion of researchers in sharing their results and in donating their working time. A growing corpus of research shows that academic researchers are increasingly overworked and highly stressed. This corroborates the point that the room for undertaking additional tasks with future and uncertain benefits is very limited. The paper thus recommends that promoters of digital knowledge repositories focus on the needs of the researchers who are expected to contribute their knowledge. In order to treat them fairly and to ensure the success of the repositories, knowledge sharing needs to be rewarded so as to improve the working conditions of contributors. In order to help implementing this researcher-centred approach, the paper proposes the idea of expediential trust: rewards for contributing should be such that rational, self-interested researchers would freely decide to contribute their knowledge and effort trusting that this would make them better off. (shrink)

Following the outbreak of what would become the COVID-19 pandemic, social distancing measures were quickly introduced across East Asia—including drastic shelter-in-place orders in some cities—drawing on experience with the outbreak of severe acute respiratory syndrome almost two decades ago. “Smart City” technologies and other digital tools were quickly deployed for infection control purposes, ranging from conventional thermal scanning cameras to digital tracing in the surveillance of at-risk individuals. Chatbots endowed with artificial intelligence have also been deployed to shift (...) part of healthcare provision away from hospitals and to support a number of programmes for self-management of chronic disease in the community. With the closure of schools and adults working from home, digital technologies have also sustained many aspects of both professional and social life at a pace and scale not considered to be practicable before the outbreak. This paper considers how these new experiences with digital technologies in public health surveillance are spurring digitalization in East Asian societies beyond the conventional public health context. It also considers some of the concerns and challenges that are likely to arise with rapid digitalization, particularly in healthcare. (shrink)

This article analyzes India’s Traditional Knowledge Digital Library (TKDL) as a potential intervention in the administration of patent law. The TKDL is a database including a vast body of traditional medical knowledge from India, aiming to prevent the patenting and misappropriation of that knowledge. This article contextualizes the TKDL in relation to documentation theory as well as to existing research on the uses of databases to protect traditional knowledge. It explores the TKDL’s potential consequences for India’s traditional medical knowledge (...) and the wider implications that traditional knowledge databases can have for the safeguarding of traditional knowledge in general. The article concludes that on the one hand the TKDL bridges the gap between the main branches of Indian traditional medicine and the formal knowledge system of International Patent Classifications. Furthermore, it has also inspired revisions of the International Patent Classification system, which makes it better adapted to incorporate traditional medical knowledge. On the other hand, critical research on traditional knowledge documentation argues that traditional knowledge databases, like the TKDL, can decontextualize the knowledge they catalogue and dispossess its original owners. The TKDL, however, also fits into a national, Indian agenda of documenting and modernizing traditional medicine that predates the formation of the TKDL by several decades and challenges the dichotomy between traditional and scientific knowledge systems that originally motivated the formation of the TKDL. (shrink)

This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use (...) of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”. (shrink)

Background Informed consent procedures for large population-based cohort studies should be comprehensive and easy-to-use. This is particularly challenging when participants from different socio-economic groups and multicultural ethnic backgrounds are involved. Recently, more and more studies have tried to use multimedia in informed consent procedures. We describe the development and testing of a digital informed consent app and elaborate on whether this may contribute to a comprehensive and practical procedure to obtain informed consent for public health research. Methods In a (...) sample of parents with young children, we used a mixed method approach to study the user experience of an informed consent app and evaluate whether it can be used to adequately inform people and register their consent. Through semi-structured interviews we investigated participants’ experiences with and opinions about the app, with a special focus on comprehensibility of the content and the usability of the app. Information retention questions were asked to evaluate to what extent participants could recall key aspects of the provided study information. Results The 30 participants in this study used the app between 4 and 15 min to give their consent. Overall, they found the app well-designed, informative and easy to use. To learn more about the study for which informed consent is asked, most of the participants chose to watch the animated film, which was generally found to convey information in a clear manner. The identification process was met with mixed reactions, with some feeling it as a secure way to give consent, while for others it contradicted their view of using data anonymously. Information retention questions showed that while all participants remembered various aspects of the study, fewer than half answered all four questions satisfactorily. Conclusion Our study shows that a well-designed informed consent app can be an effective tool to inform eligible participants and to record consents. Still, some issues remain, including trust barriers towards the identification procedure and lack of information retention in some participants. When implementing consent procedures that incorporate digital formats, it may be beneficial to also invest in a complementary face-to-face recruitment approach. (shrink)