In recent years we have seen the emergence of “personalised medicine.” This development can be seen as the logical product of reductionism in medical science in which disease is increasingly understood in molecular terms. Personalised medicine has flourished as a consequence of the application of neoliberal principles to health care, whereby a commercial and social need for personalised medicine has been created. More specifically, personalised medicine benefits from the ongoing commercialisation of the body and of genetic knowledge, the idea that (...) health is defined by genetics, and the emphasis the state places on individual citizens as being “responsible for” their own health. In this paper I critique the emergence of personalised medicine by examining the ways in which it has already impacted upon health and health care delivery. (shrink)

This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.

This paper traces the origins of the concept of personalisation in public sector services, and applies it to school education. The original conceptualisation stressed the need for 'deep' rather than shallow, personalisation, if radical transformation of services were to be achieved. It is argued that as the concept has been disseminated and implemented through policy documents, notably the 2005 White Paper, it has lost its original emphasis on deep personalisation. The focus in this article is particularly upon (...) gifted and talented students whose education provides the best case example of how the theory of personalisation might work in practice. Two examples of the lessons in a sixth form college are used to illustrate the character ofpersonalised pedagogy in practice. The implications for theory and practice are discussed. (shrink)

Rather than seek to distinguish hype from legitimate promise, it may be more helpful to think about personalised medicine as embodying a promissory economy which serves both to mobilize resources for research and — partly at least — to determine the ends to which that research is directed. Personalised medicine is a development of the larger promissory economy of medical biotechnology. As such, it systematically conflates public benefit with the pursuit of commercial and especially pharmaceutical interests. Consequently, research and development (...) in personalised medicine tends to favour the production of expensive new treatments over unprofitable forms of prevention or more effective use of older therapies. A rebalancing of research priorities is needed to favour the pursuit of public benefit, even when it does not deliver private profits. This will in turn require sustained reflection, self-criticism and often self-denial on the part of public research funders and the scientists they support. (shrink)

Research Ethics, Volume 18, Issue 2, Page 114-125, April 2022. Learning about research ethics and research integrity is greatly facilitated by case studies, which illuminate, ground and personalise abstract questions. This paper argues that fiction can provide similar learning experiences, incarnating ethical dilemmas through a medium that is highly accessible yet sophisticated in its depictions of how researchers behave. Examples of fictional illustrations are given to illustrate various themes such as animal experimentation, exploitation of the vulnerable, researcher bias and research (...) fraud. (shrink)

Learning about research ethics and research integrity is greatly facilitated by case studies, which illuminate, ground and personalise abstract questions. This paper argues that fiction can provide similar learning experiences, incarnating ethical dilemmas through a medium that is highly accessible yet sophisticated in its depictions of how researchers behave. Examples of fictional illustrations are given to illustrate various themes such as animal experimentation, exploitation of the vulnerable, researcher bias and research fraud.

Die öffentliche Diskussion um die „personalisierte Medizin“ legt nahe, dass mit diesem medizinischen Ansatz hohe Erwartungen an einen Beitrag zur klinischen Versorgung verbunden werden. Über die Wahrnehmungen und Bewertungen klinisch tätiger Ärzte ist jedoch wenig bekannt. Die vorliegende qualitative Interviewstudie gibt einen Einblick bezüglich des Einflusses „personalisierter Medizin“ auf die klinische Praxis aus ärztlicher Perspektive. Die Ärzte im vorliegenden Sample nehmen „personalisierte Medizin“ zwar als einen medizinischen Fortschritt wahr, sehen allerdings keine grundsätzliche Veränderung der bisherigen medizinischen Praxis. Als zentrales Problem (...) wird die Handhabung und Verwertung von molekulargenetischen Informationen für Diagnose und Therapie in der klinischen Praxis thematisiert. In Anbetracht der Ergebnisse muss infrage gestellt werden, ob „personalisierte Medizin“ nicht das Gegenteil von dem, was ihr Name nahe legt – eine personenorientiertere Medizin – bewirkt. Die Strategien im Umgang mit den Informationsmassen produzieren selbst neue Herausforderungen, die ein Hindernis für eine personenorientierte Medizin darstellen könnten. (shrink)

Personalised medicine has been discussed as a medical paradigm shift that will improve health while reducing inefficiency and waste. At the same time, it raises new practical, regulatory, and ethical challenges. In this paper, we examine PM strategies epistemologically in order to develop capacities to address these challenges, focusing on a recently proposed strategy for developing patient-specific models from induced pluripotent stem cells so as to make individualised treatment predictions. We compare this strategy to two main PM strategies—stratified medicine and (...) computational models. Drawing on epistemological work in the philosophy of medicine, we explain why these two methods, while powerful, are neither truly personalised nor, epistemologically speaking, novel strategies. Both are forms of correlational black box. We then argue that the iPSC models would count as a new kind of black box. They would not rely entirely on mechanistic knowledge, and they would utilise correlational evidence in a different way from other strategies—a way that would enable personalised predictions. In arguing that the iPSC models would present a novel method of gaining evidence for clinical practice, we provide an epistemic analysis that can help to inform the practical, regulatory, and ethical challenges of developing an iPSC system. (shrink)

Firms are increasingly personalising their offers and services, leading to an ever finer-grained segmentation of consumers online. Targeted online advertising and online price discrimination are salient examples of this development. While personalisation's overall effects on consumer welfare are expectably ambiguous, it can lead to concentration in the distribution of advertising and commercial offers. Constellations are possible in which a market is generally open to competition, but the targeted consumer is only made aware of one possible seller. For the consumer, (...) such a market could effectively resemble a monopoly. We call such extreme cases ‘targeting pockets’. Competition-law metrics such as the Herfindahl–Hirschman Index and traditional means of public oversight of adverts would not detect this concentration. We, therefore, suggest a novel metric, the Concentration-after-Personalisation Index (CAPI). The CAPI treats every consumer as a separate ‘market’, computes a measure of concentration for personalised adverts and offers for each individual consumer separately, and then averages the result to measure the exposure experienced by an average consumer. We demonstrate how the CAPI can serve as a monitoring tool for regulators and auditors and thus help to enforce existing consumer law as well as proposed new regulations such as the European Union's Digital Services Act and its Artificial Intelligence Act. We further show how adding noise via randomly distributed non-personalised adverts can dilute the potential harm of overly concentrated personalisation. We demonstrate how the CAPI can identify the optimal degree of added noise, balancing the protection of consumer choice with the economic interests of advertisers. (shrink)

Technological advances are bringing new light to privacy issues and changing the reasons for why privacy is important. These advances have changed not only the kind of personal data that is available to be collected, but also how that personal data can be used by those who have access to it. We are particularly concerned with how information about personal attributes inferred from collected data (such as online behaviour), can be used to tailor messages and services to specific individuals or (...) groups. This kind of ‘personalised targeting’ has the potential to influence individuals’ perceptions, attitudes, and choices in unprecedented ways. In this paper, we argue that because it is becoming easier for companies to use collected data for influence, threats to privacy are increasingly also threats to personal autonomy—an individual’s ability to reflect on and decide freely about their values, actions, and behaviour, and to act on those choices.4 While increasing attention is directed to the ethics of how personal data is collected, we make the case that a new ethics of privacy needs to also think more rigorously about how personal data may be used, and its potential impact on personal autonomy. (shrink)

Developments in the provision of care and support services for disabled and older people across developed welfare states have led to the expansion of personalisation (sometimes called cash-for-care, direct payments, care payments, etc.) schemes, whereby cash is paid in substitute for care services and support. Although these schemes vary considerably in their scope and operation (sometimes paying carers directly, sometimes enabling disabled and older people to act as direct employers, sometimes mixing paid and unpaid care), they share the characteristics (...) of commodifying care and support services and will have a potentially profound impact on the relationship between individuals, families, communities and the welfare state. Although the schemes have been evaluated within their own national contexts, little work has been done so far to explore the theoretical implications of their development and extension, particularly from an ethics of care perspective. This paper intends to fill that theoretical gap by drawing on comparative evidence from several schemes across different national contexts to develop an analysis which draws on feminist theory and an ethics of care approach to examine (a) the gendered policy outcomes and impact of such schemes; (b) a feminist analysis of the governance implications of personalisation; (c) the implications for the gendered division of work, particularly between paid and unpaid care work and between different groups of paid and unpaid carers; (d) an ethics of care analysis of the impact of personalisation over the lifecourse of disabled and older people, and carers; and (e) a discussion of the relationship between commodification, empowerment, citizenship and choice drawing on the work of care ethicists. It will draw conclusions about the outcomes of a range of types of personalisation schemes and thus have implications for theory, policy and practice. (shrink)

Governments are investing in precision medicine with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and (...) threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed. (shrink)

In interviews, it may happen that a respondent gives an answer which seems well formatted, but is not receipted as acceptable by the interviewer. In this article I examine one way in which interviewers display their diagnosis of the problem and act to bring about its solution. In the cases I describe, the interviewers defer revision of the question until they have established a new, more personalized basis for it, informed by their knowledge of the respondents' circumstances. There are three (...) things of interest. The first is how this actually works conversationally; it seems to be structured as an insertion sequence and played out by presequential turns which are highly projective of the respondent's agreement. The second is that the scenario that the interviewer inserts is a positive example of what would have been an answer to the `failed' original question. The third is that there is a difference between the original, general question and its subsequent, specific revision. I argue that all these features manifest interviewers' solution of their dilemma in choosing between literal and sensitive questioning. (shrink)

‘The fundamental tension between the individualistic promises of personalized medicine and the demands of social justice,’ is this volume’s organizing theme. This tension is captured b...

The adoption of Big Data analytics in insurance has proved controversial but there has been little analysis specifying how insurance practices are changing. Is insurance passively subject to the forces of disruptive innovation, moving away from the pooling of risk towards its personalisation or individualisation, and what might that mean in practice? This special theme situates disruptive innovations, particularly the experimental practices of behaviour-based personalisation, in the context of the practice and regulation of contemporary insurance. Our contributors argue (...) that behaviour-based personalisation in insurance has different and broader implications than have yet been appreciated. BDAs are changing how insurance governs risk; how it knows, classifies, manages, prices and sells it, in ways that are more opaque and more extensive than the black boxes of in-car telematics. (shrink)

This paper presents a ubiquitous learning system, the “Personalised Ubiquitous Learning Platform”, which integrates collaborative and social learning for the enhancement of the third level educational learning experience. University College Dublin provides its students with managed learning environments and adaptive learning via UCD Horizon which enables students to take different courses from different colleges throughout the university. The main objective of this platform is to complement the current MLEs with a single supported intelligent and personalised ubiquitous learning environment that will (...) promote and make provisions for adaptive and collaborative learning, human computer interaction on mobile and desktop clients anywhere and anytime. The system aims to enhance the students’ learning experience in third level educational environment by employing personalisation techniques such as the agent-oriented recommendation technique to engage students and help them access the content material for their studies. (shrink)

Personalised nutrition (PN) has emerged over the past twenty years as a promising area of research in the postgenomic era and has been popularized as the new big thing out of molecular biology. Advocates of PN claim that previous approaches to nutrition sought general and universal guidance that applied to all people. In contrast, they contend that PN operates with the principle that “one size does not fit all” when it comes to dietary guidance. While the molecular mechanisms studied within (...) PN are new, the notion of a personal dietary regime guided by medical advice has a much longer history that can be traced back to Galen’s “On Food and Diet” or Ibn Sina’s (westernized as Avicenna) “Canon of Medicine”. Yet this history is either wholly ignored or misleadingly appropriated by PN proponents. This (mis)use of history, we argue helps to sustain the hype of the novelty of the proposed field and potential commodification of molecular advice that undermines longer histories of food management in premodern and non-Western cultures. Moreover, it elides how the longer history of nutritional advice always happened in a heavily moralized, gendered, and racialized context deeply entwined with collective technologies of power, not just individual advice. This article aims at offering a wider appreciation of this longer history to nuance the hype and exceptionalism surrounding contemporary claims. (shrink)

The idea of personalised medicine (PM) has gathered momentum recently, attracting funding and generating hopes as well as scepticism. As PM gives rise to differing interpretations, there have been several attempts to clarify the concept. In an influential paper published in this journal, Schleidgen and colleagues have proposed a precise and narrow definition of PM on the basis of a systematic literature review. Given that their conclusion is at odds with those of other recent attempts to understand PM, we consider (...) whether their systematic review gives them an edge over competing interpretations. We have found some methodological weaknesses and questionable assumptions in Schleidgen and colleagues’ attempt to provide a more specific definition of PM. Our perplexities concern the lack of criteria for assessing the epistemic strength of the definitions that they consider, as well as the logical principles used to extract a more precise definition, the narrowness of the pool from which they have drawn their empirical data, and finally their overlooking the fact that definitions depend on the context of use. We are also worried that their ethical assumption that only patients’ interests are legitimate is too simplistic and drives all other stakeholders’ interests—including those that are justifiable—underground, thus compromising any hope of a transparent and fair negotiation among a plurality of actors and interests. As an alternative to the shortcomings of attempting a semantic disciplining of the concept we propose a pragmatic approach. Rather than considering PM to be a scientific concept in need of precise demarcation, we look at it as an open and negotiable concept used in a variety of contexts including at the level of orienting research goals and policy objectives. We believe that since PM is still more an ideal than an achieved reality, a plurality of visions is to be expected and we need to pay attention to the people, reasons and interests behind these alternative conceptions. In other words, the logic and politics of PM cannot be disentangled and disagreements need to be tackled addressing the normative and strategic conflicts behind them. (shrink)

This book presents the views of leading researchers from across Europe and North America, from both normative and empirical disciplines, in the multidisciplinary debate on the current state of research on the ethical, legal and social implications of personalised medicine. The work partially draws on a four year collaborative research project funded by the German Ministry for Education and Research, and at a time when future health care is a topic of much discussion this book provides valuable policy recommendations for (...) the way forward. (shrink)

The adoption of personalisation as the principle on which policy and practices for social care in England should be developed has been hailed as marking a fundamental transformation in the nature of social care and the experiences of service users. This article examines both the discourse of personalisation and the practices that are being adopted to implement this from an ethic of care perspective. It adopts an approach based on Sevenhuijsen's ‘Trace’ analysis to trace the normative frameworks in (...) key policy documents (in particular Putting People First), noting that critics of care have largely succeeded in relegating care to a marginal position within policy discourse and that a relational sensibility is largely absent within this. The article considers the practices associated with personalisation in relation to the moral principles of an ethic of care and conceptions of the ‘individual’ within these. It addresses the implications of this approach for broader political and policy issues: the universality of provision, collective responsibility for welfare and well-being, and broader issues of social justice in conditions of vulnerability. (shrink)

The ethic of care provides not only a basis for understanding relationships of care at the micro level but also a potent form of political ethics, relevant to the development of welfare services. Williams (2001), for example, argues that the concept of care has the capacity to be a central referent in social policy?a point at which social and cultural transformations meet with the changing relations of welfare (Williams 2001, p. 470). English social care services are currently in another period (...) of change precipitated by the ?personalisation agenda?. This agenda is seen as having the potential to revolutionise social care, to create the conditions needed to tailor services to individual needs, and to give service users greater choice and control, including, where possible, control over their own service budgets or direct possession and management of care funds. These developments are inextricably linked to broader economic and social trends, key amongst which are the ageing of the population and changing economic conditions affecting both the labour market and the market for care services. This article applies the feminist ethic of care to an analysis of the personalisation agenda in the context of care for dependent older people. It highlights fundamental political questions posed concerning the nature and extent of older people's need for care, responsibility for meeting these needs and the associated costs. It questions whether the personalisation agenda could potentially offer a more responsive form of care, by placing more power and control in older people's hands. Key points considered are the individualisation of care and the ways in which control is conceptualised. The article concludes with an assessment of the feminist ethic of care as a basis for policy evaluation. (shrink)

One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data (...) practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories. (shrink)

Personalised learning systems—systems that predict learning needs to tailor education to the unique learning needs of individual students—are gaining rapid popularity. Praise for educational technology is often focused on how technology will benefit school systems, but there is a lack of understanding of how it will affect the student and the learning process. By uncovering what the meaning of ‘personal’ is in educational philosophy and as embodied in the technology, we illustrate that these two understandings are different regarding the autonomy (...) of the student. Personalised learning technology, therefore, bears the risk of failing to achieve its educational ideal of what personalisation should be. We also illustrate how personalised learning technology effects student autonomy by requiring the intensive tracking of the learning process, exposing them to privacy and data protection risks. We do not claim that education does not need technology, but we want to illustrate the importance of values as drivers of innovation. (shrink)

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension (...) of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided. (shrink)

Google Search is arguably one of the primary epistemic tools in use today, with the lion’s share of the search-engine market globally. Scholarship on countering the current scourge of misinformation often recommends “digital lit- eracy” where internet users, especially those who get their information from so- cial media, are encouraged to fact-check such information using reputable sources. Given our current internet-based epistemic landscape, and Google’s dominance of the internet, it is very likely that such acts of epistemic hygiene will take (...) place via Google Search. The question arises whether Google Search is fit for purpose, given the apparent misalignment the general epistemic goal of promoting true beliefs and the greater online commercial ecosystem in which it is embedded. I argue that Google Search is epistemically problematic as it stands, mainly due to the opacity related to the parameters it uses for personalising search results. I further argue that in as far as an ordinary internet user is legitimately ignorant of Google’s workings, uses it in an “ordinary manner”, and is generally unable to avoid using it in the current information environment, they are not ep- istemically blameworthy for any false beliefs that they acquire via it. I conclude that too much emphasis is currently placed on individual epistemic practices and not enough on our information environment and epistemic tools when it comes to countering misinformation. (shrink)

The concept of medical necessity plays a central role in many healthcare systems, including Canada's, by helping determine which healthcare services will receive funding. Despite its significance in health policy frameworks, medical necessity has proven to be notoriously difficult to define and operationalise. A shift toward a more personalised and genetically‐informed approach to the provision of healthcare seems likely to heighten associated policy challenges. One of the stated goals of personalised medicine is to save healthcare systems money by facilitating the (...) use of less and more effective treatments. However, any cost saving potential may ultimately be thwarted by physicians' legal and ethical obligations, given that physicians will inevitably be required to implement and define the bounds of genetically‐informed medical necessity for their patients. (shrink)

The marketisation of education in England began in the 1980s. It was facilitated by national testing (which gave objective and comparable information to parents), and by the New Public Management (which introduced a posteriori funding and competition among providers). Now a new complementary phase of marketisation is being introduced: personalisation, whose intellectual provenance is in marketing theory. Conceptually, personalisation is imprecise; practically, at this stage, its intended effects within schools may amount to no more than a new legitimatory (...) rhetoric which leaves pedagogy and the curriculum little changed. (shrink)

Expectations play a major role in ‘driving’ biotechnology research and development. However, their ethical significance has been largely overlooked. This article examines the dynamics and ethics of expectations surrounding biotechnologies, focusing on biobanks and the promise of personalised medicines. It explores the personal and social implications of expectations, especially where technologies fail to eventuate. The article identifies the claims and practices that support the expectations pertaining to biotechnologies and some of the factors that work against the fulfilment of predicted innovations. (...) It is argued that the role of expectations in shaping thinking and action needs to be taken seriously by those who are concerned about the ethical implications of biotechnologies. (shrink)

This paper examines potential ethical and legal issues arising during the research, develop- ment and clinical use of a proposed strategy in personalized medicine (PM): using human induced pluripotent stem cell (iPSC)-derived tissue cultures as predictive models of individ- ual patients to inform treatment decisions. We focus on epilepsy treatment as a likely early application of this strategy, for which early-stage stage research is underway. In relation to the research process, we examine issues associated with biological samples; data; health; vulnerable (...) populations; neural organoids; and what level of accuracy justifies using the iPSC-derived neural tissue system. In relation to clinical use, we examine potential uses in pre-natal screening, and effects on clinical decision-making. Although our focus is providing recommendations for researchers developing work in this area, we identify the novel issue of deciding on an acceptable accuracy level for the system. We also emphasize an issue thus far neglected in the ethics of PM: PM tends to represent treatment decisions as though they should be directed solely by biomedical information, but this in itself could be detri- mental to best personalizing treatment decisions in the clinic. (shrink)

Can business ethics textbooks and modules prepare business students to manage ethical challenges if they bypass students’ personal ethics? This paper is an academic reflection by a Higher Education, business ethics tutor in the UK and Ireland. It charts a pedagogic journey of moving away from lecturing based on the contents of the standard, “impersonal”, business ethics textbook, to moving towards facilitating interaction among students about their ethics in all parts of life, and especially “at work” in their part-time employment. (...) The rationale for this pedagogic shift is supported by excerpts from Journal of Business Ethics Education (JBEE) articles and by current, UK, Higher Education (HE), quality frameworks. Qualitative student feedback on their experience of this more personal design of a business ethics module is included. Ten exercise suggestions and resources are offered. Business ethics textbook authors and tutors are recommended to begin their content with exercises in personal ethics. (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)

Personalisation is the new mantra in social care; this article focuses on how personalisation can be achieved in practice, by presenting an analysis of data from people with learning disabilities and their personal assistants, where traditional care relationships have often been shown to be disempowering. The focus here is on the ways in which both parties use references to shared knowledge, joint experiences or personal-life information. These strategies can be used for various social goals, and instances are given (...) where shared references are used during non task-related talk. Both parties are seen on occasion to attempt to refer to shared information, and dense layers of inference can result, which move the interaction onto an ordinary, more symmetrical and friendly footing. The article concludes that shared knowledge referencing creates a way to shift between the personal and the professional, to blur the boundaries, and to create a new and more personalised relationship. (shrink)

Assent is an important ethical and legal requirement of paediatric research. Unfortunately, there are significant differences between the guidelines on the details of assent.

In light of the successful occupation of the term ‘person’ for Personalised Medicine, it is necessary to ask what different notions of personhood practically imply. This article examines two. The first is the reductionist molecular individual, embraced by PM enthusiasts. Here the person is a contradictory dividuum, oscillating between increased autonomy and a new, infantilising tech-paternalism. The second relies on a Christ-analogical distinction of two modes. The dramatic amplitude of personal absence-presence then unfolds throughout time. This provides the logic or (...) spirit of the medical act. Drawing on the ethics of war, it will be recast as an arduous task of mending. (shrink)

The paper discusses some of the implications of regulatory innovation in the area of advanced biological therapies and personalised medicine. Benefits, risks and trade-offs are highlighted.

Background Biomedicine, i.e. the application of basic sciences to medicine, has become the cornerstone for the study of etiopathogenesis and treatment of diseases. Biomedicine has enormously contributed to the progress of medicine and healthcare and has become the preferred approach to medical problems in the West. The developments in statistical inference and machine learning techniques have provided the foundation for personalised medicine where clinical management can be fully informed by biomedicine. The deployment of precision medicine may impact the autonomy and (...) self-normativity of the patients. Understanding the relationship between biomedicine and medical practice can help navigate the benefits and challenges offered by precision medicine. Methods Conventional content analysis was applied to “Le Normal and le Pathologique” (Canguilhem G. The Normal and the Pathological. Princeton: Princeton University Press; 1991) and further investigated with respect to its relationship with techne and precision medicine using PubMed and Google Scholar and the Standford Encyclopedia of Philosophy to search for the following keywords singularly or in combination: “Canguilhem”, “techne”, “episteme”, “precision medicine”, “machine learning AND medicine”. Results The Hippocratic concept of techne accounts for many characteristics of medical knowledge and practice. The advances of biomedicine, experimental medicine and, more recently, machine learning offer, in contrast, the model of a medicine based purely on episteme. I argue that Canguilhem medical epistemology establishes a framework where episteme and data-driven medicine is compatible with the promotion of patient’s autonomy and self-normativity. Conclusions Canguilhem’s medical epistemology orders the relationship of applied medicine with experimental sciences, ethics and social sciences. It provides guidance to define the scope of medicine and the boundaries of medicalization of healthy life. Finally, it sets an agenda for a safe implementation of machine learning in medicine. (shrink)