Francis Collins had an impressive track record as a gene hunter (cystic fibrosis, neurofibromatosis, Huntington’s disease) when he was appointed Director of the Human Genome Project (HGP) in 1993. In June 2000, together with Craig Venter and President Bill Clinton, he presented the draft version of the human genome sequence to a worldwide audience during a famous press conference. And in 2009, President Barack Obama nominated him as director of the National Institutes of Health (NIH), the largest Tfunding agency for (...) biomedical research in the world. s The In 2006, Collins published his book The Language of God,3 an autobiographical account of the HGP and its scientific, historical, and societal significance, with special attention paid to the impact of the human sequence on the way we see our world and ourselves.4 Now, by way of a sequel, he has written The Language of Life. Wherea Language of God focused on the genome sequence of mankind in general, and on the HGP as a “revolution” in biomedicine, the new book, as indicated by its subtitle, is oriented towards “the revolution in personalized medicine”, the impact of the genomics revolution on the personal lives of individuals. Before subjecting Collins’ book to a closer reading, I first of all would like to explain how I will read it and from what perspective. Why is genomics in general, and the HGP and its aftermath in particular, a subject of interest to a philosopher like me? Why did I become interested in assessing the HGP and in studying the work and views of some of its key contributors? (shrink)

The rise of personalised medicine can be seen as an extension of individualism and as a threat to the common good.

The soaring promises made by personalized genetic medicine advocates are probably loftier than those in any other medical or scientific realm today. Are they justified?

Even in the increasingly individualized American medical system, advocates of 'personalized medicine' claim that healthcare isn't individualized enough. With the additional glamour of new biotechnologies such as genetic testing and pharmacogenetics behind it, 'Me Medicine'-- personalized or stratified medicine-- appears to its advocates as the inevitable and desirable way of the future. Drawing on an extensive evidence base, this book examines whether these claims are justified. It goes on to examine an alternative tradition rooted in (...) communitarian ideals, that of the common good as a goal in medicine. (shrink)

The success of precision medicine depends on obtaining large amounts of information about at-risk populations. However, getting consent is often difficult. Why? In this commentary I point to the differentials in social status involved. These differentials are inevitable once personal information is surrendered, but are particularly intense when the studied populations are socioeconomically or socioculturally disadvantaged and/or ethnically stigmatized groups. I suggest how the deep distrust of the latter groups can be partially justified as a lack of confidence that (...) their core values or interests will sufficiently be taken into account. Hence, the ethical challenge here lies not in avoiding status differentials, but in dealing with them appropriately. Scientists should not assume trust from others but adopt a norm of “demonstrating trustworthiness”. (shrink)

ABSTRACT: Abstract Most modern knowledge is not science. The physical sciences have successfully validated theories to infer they can be used universally to predict in previously unexperienced circumstances. According to the conventional conception of science such inferences are falsified by a single irregular outcome. And verification is by the scientific method which requires strict regularity of outcome and establishes cause and effect. -/- Medicine, medical research and many “soft” sciences are concerned with individual people in complex heterogeneous populations. These (...) populations cannot be tested to demonstrate strict regularity of outcome in every individual. Neither randomised controlled trials nor observational studies in medicine are science in the conventional conception. Establishing and using medical and other “soft science” theories cannot be scientific. It requires conceptually different means: requiring expert judgement applying all available evidence in the relevant available factual matrix. -/- The practice of medicine is observational. Prediction of outcomes for the individual requires professional expertise applying available medical knowledge and evidence. Expertise in any profession can only be acquired through experience. Prior cases are the fundament of knowledge and expertise in medicine. Case histories, studies and series can provide knowledge of extremely high reliability applicable to establishing reliable general theories and falsifying others. Their collation, study and analysis should be a priority in medicine. Their devaluation as evidence, the failure to apply their lessons, the devaluation of expert professional judgement and the attempt to emulate the scientific method are all historic errors in the theory and practice of modern medicine. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Evidence based medicine (EBM) is under critical debate, and person centered healthcare (PCH) has been proposed as an improvement. But is PCH offered as a supplement or as a replacement of EBM? Prima facie PCH only concerns the practice of medicine, while the contended features of EBM also include methods and medical model. I here argue that there are good philosophical reasons to see PCH as a radical alternative to the existing medical paradigm of EBM, since the two (...) seem committed to conflicting ontologies. This paper aims to make explicit some of the most fundamental assumptions that motivate EBM and PCH, respectively, in order to show that the choice between them ultimately comes down to ontological preference. While EBM has a solid foundation in positivism, or what I here call Humeanism, PCH is more consistent with causal dispositionalism. I conclude that if there is a paradigmatic revolution on the way in medicine, it is first of all one of ontology. (shrink)

Loneliness in medicine is a serious problem not just for patients, for whom illness is intrinsically isolating, but also for physicians in the contemporary condition of medicine. We explore this problem by investigating the ideal physician-patient relationship, whose analogy with friendship has held enduring normative appeal. Drawing from Talbot Brewer and Nir Ben-Moshe, we argue that this appeal lies in a dynamic form of companionship incompatible with static models of friendship-like physician-patient relationships: a mutual refinement of embodied virtue (...) that draws both persons together. The ideal physician-patient relationship has a dialectical character that fosters each member's improvement of phenomenologically recognizing and embodying moral virtues. A key component of this dynamic is a commitment to the common goal of the patient's health, realized through joint interactivities and conversations over time. The physician's presence to the patient's suffering—understood best as an alienating phenomenological condition for the patient—orients and discloses possibilities for virtuous caregiving by structuring the meanings of the goals, conversations, and joint narrative constitutive of their relationship. Presence to suffering, paradoxically, is perhaps an important prerequisite for this dynamic partnership. These activities dialectically build an interpretive horizon of understanding through which moral goods and character refinement—in and for the other—may become revealed for both persons in their shared being-in-the-world. This analysis of suffering, mood, and revealing of (possible) moral goods has implications for addressing the modern problem of loneliness for patients and physicians, who are increasingly inhibited from building flourishing relationships with each other. (shrink)

This paper aims to clarify the nature of understanding in medicine. The first part describes in more detail what it means to understand something and links a type of understanding (i.e., objectual understanding) to explanations. The second part proceeds to investigate what objectual understanding of a disease (i.e., biomedical understanding) requires by considering the case of scurvy from the history of medi- cine. The main hypothesis is that grasping a mechanistic explanation of a condi- tion is necessary for a (...) biomedical understanding of that condition. The third part of the paper argues that biomedical understanding is necessary, but not sufficient for understanding in a clinical context (i.e., clinical understanding). The hypothe- sis is that clinical understanding combines biomedical understanding of a disease or pathological condition with understanding illness, which involves some degree of personal understanding of the patient. It is argued that, in many cases, clinical understanding necessitates adopting a particular second-personal stance and using cognitive resources in addition to those involved in biomedical understanding. (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)

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)

It is easier to talk frankly to a person whom one trusts. It is also easier to agree with a scientist whom one trusts. Even though in both cases the psychological state that underlies the behavior is called ‘trust’, it is controversial whether it is a token of the same psychological type. Trust can serve an affective, epistemic, or other social function, and comes to interact with other psychological states in a variety of ways. The way that the functional role (...) of trust changes across contexts and objects is further complicated when communities and individuals mediate it through technologies, and even more so when that mediation involves artificial intelligence (AI) and machine learning (ML). In this chapter I look at the ways in which trust in institutions, and specifically the medical profession, is affected by the use of AI and ML. There are two key elements of this analysis. The first is a disanalogy between institutional trust in medicine and institutional trust in science (Irzik and Kurtulmus 2021, 2019; Kitcher 2001). I note that as AI and ML become a more prominent part of medicine, trust in a medical institution becomes more like trust in a scientific institution. This is problematic for institutional trust in medicine and the practice of medicine, since institutional trust in science has been undermined by, among other things, the spread of misinformation online and the replication crisis (Romero 2019). There is also a strong analogy between the psychological state of the person who trusts a scientific report or testimony and the psychological state of a patient who trusts individual recommendations made by a medical professional in a clinical setting. In both cases, institutional trust makes it less likely that a mistake or malfeasance will result in reactive attitudes, such as blame or anger, directed at other individual members of that institution. However, it also renders people vulnerable enough to blame the institution itself. This, with time, can erode trust in the institution and naturally leads to policy recommendations that aim to preserve institutional trust. I survey two ways in which that can be done with institutional trust in medicine in the age of AI and ML. (shrink)

In medicine, some personality traits, involving specific patterns of thought, feeling, and behavior, are considered to be pathological. Personality types, characteristic of such pervasive and maladaptive traits, are known under the term “personality disorders.” However, some of these pathological traits, diagnostic of so-called Cluster B personality disorders, largely describe immoral behavior. Hence, the question arises as to how such immoral behavior could be framed also as a medical problem. Moreover, it is not immediately clear whether persons with these disorders (...) could be held responsible for their immoral actions. By drawing on virtue ethics and the concept of responsibility without blame, the article demonstrates how the problem of compatibility between medicalization, cultivation of moral character, and responsibility could be resolved. Thereby, it is suggested that Cluster B personality disorders are best understood as both a moral and medical problem. (shrink)

One of the fundamental problems in the philosophy of psychology is to determine the relation between personal and subpersonal explanations of human behavior. The problem of determining the relation between the personal and subpersonal levels is called the “interface problem”. This paper has two goals. The first is to introduce the domestic reader to the interface problem from the perspective of the philosophy of psychology. The second goal is to show that insufficient focus on the interface problem and its potential (...) solutions can lead to uncritical and fallacious reasoning that can have significant consequences for particular debates in philosophy of medicine and philosophy of law. (shrink)

There is a middle ground of imperfect knowledge in fields like medicine and the social sciences. It stands between our day-to-day relatively certain knowledge obtained from ordinary basic observation of regularities in our world and our knowledge from well-validated theories in the physical sciences. -/- The latter enable reliable prediction a great deal of the time of the happening of events never before experienced. The former enable prediction only of what has happened before and beyond that of educated guesses (...) which may sometimes prove right and others not when we test them. -/- The imperfection of our knowledge between those limits is a consequence of complexity. -/- Reductionist empiricism fails when faced with complexity but we all still have to live in a complex world where reductionist science cannot help us devise reliable theories from which we can predict the behaviour of the world around us. We cannot predict reliably. We can only monitor actively and manage actively the world around us if we want to try to control our environment. We have a limited prediction horizon. -/- Science and empiricism work well if we want to send Voyager I and II over 3 billion miles away but not for most other things. -/- In medicine how and when to apply probabilistic, conjectural, incomplete medical theories and explanations requires professional expertise, intuition and judgement (non scientific knowledge) which is essential. Medical diagnosis is a skill of predicting from knowledge of what has happened before that the past will recur in the current patient applying expertise and intuition from knowledge and experience of prior cases and probabilistic medical research and theory. The physician is left to an educated guess as to how the future will develop for the particular individual patient the focus of his or her current attention. (shrink)

Medical ethics would be better if people were taught to think more clearly about well-being or the concept of what is good for a person. Yet for a variety of reasons, bioethicists have generally paid little attention to this concept. Here, I argue, first, that focusing on general theories of welfare is not useful for practical medical ethics. I argue, second, for what I call the “theory-without-theories approach” to welfare in practical contexts. The first element of this approach is a (...) focus on examining important and relatively uncontroversial constituents of welfare as opposed to general theories. The second key element is a framework for thinking about choice in relation to welfare, a framework I refer to as “the mild objectivity framework.” I conclude with illustrations of the way in which the “theory without theories approach” can improve thinking in medicine. (shrink)

Taking people’s longevity as a measure of good life, humankind can proudly say that the average person is living a much longer life than ever before. The AIDS epidemic has however for the first time in decades stalled and in some cases even reverted this trend in a number of countries. Climate change is increasingly becoming a major challenge for food security and we can anticipate that hunger caused by crop damages will become much more common. -/- Since many of (...) the challenges humanity faced in the past were overcome by inventive solutions coming from the life sciences, we are compelled to reconsider how we incentivize science and technology development so that those in need can benefit more broadly from scientific research. There is a huge portion of the world population that is in urgent need for medicines to combat diseases that are currently neglected by the scientific community and could immensely benefit from agricultural research that specifically targets their environmental conditions. At the same time efforts have to be made to make the fruits of current and future research more widely accessible. These changes would have to be backed by a range of moral arguments to attract people with diverging notions of global justice. This article explores the main ethical theories used to demand a greater share in the benefits from scientific progress for the poor. Since life sciences bring about a number of special concerns, a short list of conflictive issues is also offered. (shrink)

As a way to make medical decisions, Evidence-Based Medicine (EBM) has failed. EBM's failure arises from not being founded on real-world decision-making. EBM aspires to a scientific standard for the best way to treat a disease and determine its cause, but it fails to recognise that the scientific method is inapplicable to medical and other real-world decision-making. EBM also wrongly assumes that evidence can be marshaled and applied according to an hierarchy that is determined in an argument by authority (...) to the method by which it has been obtained. If EBM had valid theoretical, practical or empirical foundations, there would be no hierarchy of evidence. In all real-world decision-making, evidence stands or falls on its inherent reliability. This has to be and can only be assessed on a case-by-case basis applying understanding and wisdom against the background of all available facts—the "factual matrix." EBM's failure is structural and was inevitable from its inception. EBM confuses the inherent reliability and probative value of evidence with the means by which it is obtained. -/- EBM is therefore an ad hoc construct and is not a valid basis for medical decision-making. This is further demonstrated by its exclusion of relevant scientific and probative real-world decision-making evidence and processes. It draws upon a narrow evidence base that is itself inherently unreliable. It fails to take adequate account of the nature of causation, the full range of evidence relevant to its determination, and differing approaches to determining cause and effect in real-world decision-making. EBM also makes a muddled attempt to emulate the scientific method and it does not acknowledge the role of experience, understanding and wisdom in making medical decisions. (shrink)

Thought experiments that concoct bizarre possible world modalities are standard fare in debates on personal identity. Appealing to intuitions raised by such evocations is often taken to settle differences between conflicting theoretical views that, albeit, have practical implications for ethical controversies of personal identity in health care. Employing thought experiments that way is inadequate, I argue, since personhood is intrinsically linked to constraining facts about the actual world. I defend a moderate modal skepticism according to which intuiting across conceptually incongruent (...) worlds constitutes ‘invalid intuitioninferences’—i.e., carrying over intuitions gathered from facts about possible worlds that are at odds with facts about the actual world, for the purpose of making claims about real-life persons and their identity, leads to conceptual incongruences. Such a methodological fallout precludes accurate, informative judgments about personal identity in the actual world, calling into question the adequacy of thought experimental considerations for potential real world applications in medical ethics. (shrink)

Some commentators argue that conception constitutes the onset of human personhood in a metaphysical sense. This threshold is usually invoked as the basis both for protecting zygotes and embryos from exposure to risks of death in clinical research and fertility medicine and for objecting to abortion, but it also has consequences for certain religious perspectives, including Catholicism whose doctrines directly engage questions of personhood and its meanings. Since more human zygotes and embryos are lost than survive to birth, conferral (...) of personhood on them would mean – for those believing in personal immortality – that these persons constitute the majority of people living immortally despite having had only the shortest of earthly lives. For those believing in resurrection, zygotes and embryos would also be restored to physical lives. These outcomes do not mean that conception cannot function as a metaphysical threshold of personhood, but this interpretation carries costs that others do not. For example, treating conception as a moral threshold of respect for human life in general, rather than as a metaphysical threshold of personhood, would obviate the prospect of the afterlife being populated in the main by persons who have never lived more than a few hours or days. (shrink)

African Traditional Religion and medicine are integral parts of life and culture of the Africans and have greatly influenced their conceptions about human health and wholeness. Their many realities that Africans have not been able to abandon, in spite of the allurements of western civilization, Christianity, Islam and the advances in the biomedical sciences. The aim of this paper is to highlight the meaning of health and wholeness as central issues of concern in African Traditional Religion and Medicine. (...) The misconception, abuse and derogatory attitudes even from some notable Africans towards alternative medicine, as well as the all need of integrating both the alternative and orthodox medicine to bring about total wholeness, serves as the research problem. This paper argued that the biopsycho-socio-ecological model of health and wholeness is fundamental to the African Traditional Religion and Medicine. This model brings together the different aspects of human life and treats the human person as an integral and harmonious whole in perpetual relationship with the sacred, the human community and the environment. This paper therefore recommends that first, Africa has to open to modern medical discoveries and practices and secondly, African Traditional Religion and Medicine concern should be mainstreamed into the medical practice in health care services in contemporary Nigeria. It finally conclude that the alternative medicine despite the arrays of it inadequacies, objections and misconceptions, the practice has come to stay. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older (...) persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived (...) experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment. (shrink)

I have argued that the central Christian doctrine of general resurrection (with particular reference to the Pauline corpus) can and should be understood in a scientifically and philosophically informed context, and have proposed a personalist-phenomenological model of general resurrection as a personally continuous transformative re-embodiment by the grace of God within an interpretative framework that respects the methods and findings of science while rejecting scientism and associated physicalist metaphysical claims. I have considered and rejected the re-assembly model of resurrection on (...) theological, philosophical and scientific grounds. (shrink)

Contemporary knowledge is centered on the research on human dimensions. Philosophy should particularly appeal to values in the process of understanding the human nature. The valuable “becoming” of each human person requires growing ever more aware of his/her personal identity and of his/her role in this lifetime. In ethics, especially, values suppose moral choices or criteria on which a moral behavior is based. Max Scheler based his ethical theory on the distinction between goods and values. The “goods” are things to (...) which we attach some physical worth, and the “values” are the object of emotional perception, of the “sentiment of value” and of the place they have in the hierarchy of values. Even if the human being attributes a certain worth to individual things, he/she is always searching for a universal value, which should exceed the contingency of that thing. This universal validity is a kind of ideal measure of the value of all empiric realities and it is articulated by a normative rationality. It forms a system of universal norms that contribute to the foundation of critical axiological judgments. What values are the most enhanced by our post-modern society? Are they the same as during the modern period? What would distinguish them from the values of other cultural periods of humankind? How do we react to the new challenges generated by technological progress and the media? How do the classical disciplines such as philosophy, religion, anthropology, and art respond to these new challenges? And how could they help us to better adapt the writings of certain significant personalities to the modern and contemporary culture? These are only a few questions this volume will address. It contains a large number of articles by authors from various countries and continents: philosophers, and theologians, as well as researchers in medicine, anthropology, and new scientific technologies. As the variety of topics is impressive, we tried to organize them into three thematic parts: “Part I: Fundamental Human Values. Contemporary Challenging Globalization,” “Part II: New Axiological Challenges in Technologies and Scientific Thinking,” and “Part III: Cultural and Spiritual Personalities: Possible Answers to Our Contemporary Changes.” In the following pages, we shall make a short presentation of each article in order to facilitate a quick familiarization with the entire volume. (shrink)

This essay provides a medical theory that could clarify enigmas surrounding the historical Socrates. It offers textual evidence that Socrates had temporal lobe epilepsy and that its two types of seizure manifested as recurrent voices and peculiar behaviour, both of which were notorious hallmarks of Socrates. Common and immediate criticisms against the methodology of retrospective diagnosis are addressed first. Next, the diagnostic reasoning is presented in detail. The possibility of temporal lobe personality in Socrates is also considered. The important implication (...) of this theory is that one of the charges against Socrates, introducing new divinities, was a now well-known neurologic symptom. (shrink)

We first survey the Catholic social justice tradition, the foundation on which Caritas in Veritate builds. Then we discuss Benedict’s addition of love to the philosophical virtues (as applied to economics), and how radical a change that makes to an ethical perspective on economics. We emphasise the reality of the interpersonal aspects of present-day economic exchanges, using insights from two disciplines that have recognized that reality, human resources and marketing. Personal encounter really is a major factor in economic exchanges in (...) professional services, such as law and medicine. Finally, we examine the prospects for an economics of gratuitousness at a level higher than the individual, that is, for businesses devoted to social ends more than profit. -/- . (shrink)

Book review : The philosophy of person‐centred healthcareBy Derek Mitchell, Michael Loughlin, Cambridge: Cambridge Scholars Publishing. 2023.201 pp. £64.99. ISBN (10): 1‐5275‐9058‐5, ISBN (13): 978‐1‐5275‐9058‐8.

Background: Despite the at least decades long record of philosophical recognition and interest, the intricacy of the deceptively familiar appearing concepts of ‘disease’, ‘disorder’, ‘disability’, etc., has only recently begun showing itself with clarity in the popular discourse wherein its newly emerging prominence stems from the liberties and restrictions contingent upon it. Whether a person is deemed to be afflicted by a disease or a disorder governs their ability to access health care, be it free at the point of use (...) or provided by an insurer; it also influences the treatment of individuals by the judicial system and employers; it even affects one’s own perception of self. -/- Aims: All existing philosophical definitions of disease struggle with coherency, causing much confusion and strife, and leading to inconsistencies in real-world practice. Hence, there is a real need for an alternative. -/- Materials & Methods: In the present article I analyse the variety of contemporary views of disease, showing them all to be inadequate and lacking in firm philosophical foundations, and failing to meet the desideratum of patient driven care. -/- Results: Illuminated by the insights emanating from the said analysis, I introduce a novel approach with firm ethical foundations, which foundations are rooted in sentience, that is the subjective experience of sentient beings. -/- Discussion: I argue that the notion of disease is at best superfluous, and likely even harmful in the provision of compassionate and patient-centred care. -/- Conclusion: Using a series of presently contentious cases illustrate the power of the proposed framework which is capable of providing actionable and humane solutions to problems that leave the current theories confounded. (shrink)

Respect for autonomy is a central moral principle in bioethics. The concept of autonomy can be construed in various ways. Under the non-ideal conceptualization proposed by Beauchamp and Childress, everyday choices of generally competent persons are autonomous to the extent that they are intentional and are made with understanding and without controlling influences. It is sometimes suggested that authenticity is important to personal autonomy, so that inauthenticity prevents otherwise autonomous persons from making autonomous decisions. Building from Beauchamp and Childress’s theory, (...) this article develops a non-ideal authenticity-based conceptualization of personal autonomy. Factors that indicate inauthentic decision-making are explicated, and the full concept is defended from three expected objections. The theory is then tested on a paradigm case which has concerned theorists and practitioners for some time, namely the possible inauthenticity of anorexia nervosa patients’ decision-making. It is concluded that the theory seems to be fruitful in analyses of the degree of autonomy of patients’ decision-making, and that it succeeds in providing reliable action-guidance in practical contexts. (shrink)

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person’s perceived dignity changes in response to certain interactions and experiences with other persons. In (...) this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. (shrink)

Ibn Djuljul from Andalusia who wrote in the Western Islamic World and Nadīm from Baghdād who wrote in the Eastern Islamic World, give information about lots of physicians and translators in their books that contributed significantly to history of science. Both authors write their books at same time or very close time. Sometimes they offer similar information, but sometimes they provide different information. -/- One of the physicians whom Ibn Djuljul mentioned in his book, Māsarjawayh lived at the times of (...) Umayyads. Nadīm gives information about Māsarjīs who lived at the times of Abbāsids. However, in the course of centuries, some authors combined the knowledge about these two people by giving reference to Ibn Djuljul’s and Nadīm’s work and represented as the same person. Accordingly, most of the modern scholars mentioned the two authors as a substitute. -/- This paper wants to keep track of this confusion and wants to clarify whether Māsarjawayh who was mentioned by Ibn Djuljul and Māsarjīs who was told by Nadīm are the same person or not. (shrink)

In this paper, I consider practical strategies for resolving the epistemic injustice that ill persons face when seeking medical treatment. My arguments will expand upon those initially made by Havi Carel and Ian James Kidd in “Epistemic Injustice in Healthcare: A Philosophical Analysis.” My approach to this problem is twofold. First, I will demonstrate how the phenomenological toolkit, as it currently stands, emphasizes the patient’s experience and leaves the doctor’s experience unadjusted. After this, I will explain how the toolkit can (...) be improved to include the doctor’s perspective. (shrink)

Traditional medical practices and relationships are changing given the widespread adoption of AI-driven technologies across the various domains of health and healthcare. In many cases, these new technologies are not specific to the field of healthcare. Still, they are existent, ubiquitous, and commercially available systems upskilled to integrate these novel care practices. Given the widespread adoption, coupled with the dramatic changes in practices, new ethical and social issues emerge due to how these systems nudge users into making decisions and changing (...) behaviours. This article discusses how these AI-driven systems pose particular ethical challenges with regards to nudging. To confront these issues, the value sensitive design approach is adopted as a principled methodology that designers can adopt to design these systems to avoid harming and contribute to the social good. The AI for Social Good factors are adopted as the norms constraining maleficence. In contrast, higher-order values specific to AI, such as those from the EU High-Level Expert Group on AI and the United Nations Sustainable Development Goals, are adopted as the values to be promoted as much as possible in design. The use case of Amazon Alexa's Healthcare Skills is used to illustrate this design approach. It provides an exemplar of how designers and engineers can begin to orientate their design programs of these technologies towards the social good. (shrink)

One of the best-known principles of halakha is that Shabbat is violated to save a life. Who does this saving and how do we know that a life is in danger? What categories of illness violate Shabbat and who decides? A historical-sociological analysis of the roles played by Jew, non-Jew, and physician according to the approach of “medical cosmology” can help us understand the differences in the approach of the Shulchan Aruch compared to later decisors (e.g., the Mishnah Berurah). Such (...) differences illuminate how premodern medical triage coexisted with a different halakhic understanding than that of the biomedical age. (shrink)

Background. The literature on Theory of Mind (ToM) in antisocial samples is limited despite evidence that the neural substrates of theory of mind task involve the same circuits implicated in the pathogenesis of antisocial behaviour. Method. Eighty-nine male DSM-IV Antisocial Personality Disordered subjects (ASPDs) and 20 controls (matched for age and IQ) completed a battery of ToM tasks. The ASPD group was categorized into psychopathic and non-psychopathic groups based on a cut-off score of 18 on the Psychopathy Checklist: Screening Version. (...) Results. There were no significant group (control v. psychopath v. non-psychopathic ASPD) dif- ferences on basic tests of ToM but both psychopathic and non-psychopathic ASPDs performed worse on subtle tests of mentalizing ability (faux pas tasks). ASPDs can detect and understand faux pas, but show an indifference to the impact of faux pas. On the face/eye task non-psychopathic ASPDs showed impairments in the recognition of basic emotions compared with controls and psychopathic ASPDs. For complex emotions, no significant group differences were detected largely due to task difficulty. Conclusions. The deficits in mentalizing ability in ASPD are subtle. For the majority of criminals with ASPD and psychopathy ToM abilities are relatively intact and may have an adaptive function in maintaining a criminal lifestyle. Our findings suggest the key deficits appear to relate more to their lack of concern about the impact on potential victims than the inability to take a victim perspective. The findings tentatively also suggest that ASPDs with neurotic features may be more impaired in mentalizing ability than their low anxious psychopathic counterparts. (shrink)

I argue that embryonic stem cell research is fair to the embryo, even on the assumption that the embryo has attained full personhood and an attendant right to life at conception. This is because the only feasible alternatives open to the embryo are to exist briefly in an unconscious state and be killed or to not exist at all. Hence, one is neither depriving the embryo of an enduring life it would otherwise have had nor is one causing the embryo (...) pain. I also argue that a rational agent in a situation relevantly similar to that of the embryo would consent to such research, and I use this insight to ground two justice-based arguments in favor of this research. (shrink)

Over the past 25 years, several new “medicines” have come screeching onto health care’s various platforms, including narrative medicine, personalized medicine, precision medicine and person-centred medicine. Philosopher Miriam Solomon calls the first three of these movements different “ways of knowing” or “methods,” and argues that they are each a response to shortcomings of methods that came before them. They should also be understood as reactions to the current dominant model of medicine. In this article, (...) I will describe our dominant model, which I call “the new medical model.” I will argue that several towering problems in modern medicine can be traced to its philosophical foundations, which calls for philosophical analysis. (shrink)

Heterogeneous treatment effects represent a major issue for medicine as they undermine reliable inference and clinical decision-making. To overcome the issue, the current vision of precision and personalized medicine acknowledges the need to control individual variability in response to treatment. In this paper, we argue that gene-treatment-environment interactions (G × T × E) undermine inferences about individual treatment effects from the results of both genomics-based methodologies—such as genome-wide association studies (GWAS) and genome-wide interaction studies (GWIS)—and randomized controlled (...) trials (RCTs). Then, we argue that N-of-1 trials can be a solution to overcome difficulties in handling individual variability in treatment response. Although this type of trial has been suggested as a promising strategy to assess individual treatment effects, it nonetheless has limitations that limit its use in everyday clinical practice. We analyze the existing variability within the designs of N-of-1 trials in terms of a continuum where each design prioritizes epistemic and pragmatic considerations. We then support wider use of the designs located at the pragmatic end of the explanatory-pragmatic continuum. (shrink)

Abstract: Artificial Intelligence (AI) is rapidly becoming a cornerstone of modern healthcare, offering unprecedented capabilities in diagnostics, treatment planning, patient care, and healthcare management. This paper explores the transformative impact of AI on the healthcare sector, examining how it enhances patient outcomes, improves the efficiency of medical practices, and introduces new ethical and operational challenges. By analyzing current applications such as AI-driven diagnostic tools, personalized medicine, and hospital management systems, this paper highlights the significant advancements AI has brought (...) to the field. However, the integration of AI also raises concerns related to data privacy, algorithmic bias, and the displacement of healthcare professionals. This study provides a comprehensive overview of these developments, offering insights into the future potential of AI in revolutionizing healthcare while addressing the ethical considerations that must accompany its adoption. The findings suggest that while AI holds the promise of transforming healthcare delivery, careful consideration of its implications is essential to ensure equitable and effective implementation. (shrink)

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature (...) of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage framework and the common resource framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research. (shrink)

The automatic integration of rapidly expanding information resources in the life sciences is one of the most challenging goals facing biomedical research today. Controlled vocabularies, terminologies, and coding systems play an important role in realizing this goal, by making it possible to draw together information from heterogeneous sources – for example pertaining to genes and proteins, drugs and diseases – secure in the knowledge that the same terms will also represent the same entities on all occasions of use. In the (...) naming of genes, proteins, and other molecular structures, considerable efforts are under way to reduce the effects of the different naming conventions which have been spawned by different groups of researchers. Electronic patient records, too, increasingly involve the use of standardized terminologies, and tremendous efforts are currently being devoted to the creation of terminology resources that can meet the needs of a future era of personalized medicine, in which genomic and clinical data can be aligned in such a way that the corresponding information systems become interoperable. (shrink)

What makes a high-quality biomarker experiment? The success of personalized medicine hinges on the answer to this question. In this paper, I argue that judgment about the quality of biomarker experiments is mediated by the problem of theoretical underdetermination. That is, the network of biological and pathophysiological theories motivating a biomarker experiment is sufficiently complicated that it often frustrates valid interpretation of the experimental results. Drawing on a case-study in biomarker diagnostic development from neurooncology, I argue that this (...) problem of underdetermination can be overcome with greater coordination across the biomarker research trajectory. I then sketch an account for how coordination across a research trajectory can be evaluated. I ultimate conclude that what makes a high-quality biomarker experiment must be judged by the epistemic contribution it makes to this coordinated research effort. (shrink)

Healthcare professionals decide wisely about personalized medicine, treatment plans, and resource allocation by utilizing big data analytics and machine learning. To guarantee that algorithmic recommendations are impartial and fair, however, ethical issues relating to prejudice and data privacy must be taken into account. Big data analytics and machine learning have a great potential to disrupt healthcare, and as these technologies continue to evolve, new opportunities to reform healthcare and enhance patient outcomes may arise. In order to investigate the (...) patient’s outcomes with empirical evidence, this research was conducted using an online survey to incorporate healthcare professionals, patient’s reviews, and clinical staff. The data were analyzed using SmartPLS 4.0 to predict the structural model. The findings revealed a direct impact as positive influence of using machine learning on healthcare performance and patient outcomes through big data analytics. Moreover, it is evident that this can lead to personalized treatment plans, early interventions, and improved patient outcomes. Additionally, big data analytics can help healthcare providers optimize resource allocation, improve operational efficiency, and reduce costs. The impact of big data analytics on patient outcome and healthcare performance is expected to continue to grow, making it an important area for investment and research. (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)

rtificial Intelligence (AI) is swiftly becoming a fundamental element in modern healthcare, bringing unparalleled capabilities in diagnostics, treatment planning, patient care, and healthcare management. This paper delves into AI's transformative impact on the healthcare sector, highlighting how it enhances patient outcomes, boosts the efficiency of medical practices, and introduces new ethical and operational challenges. Through an analysis of current applications such as AI-driven diagnostic tools, personalized medicine, and hospital management systems, the paper underscores the significant advancements AI has (...) introduced to the field. However, the integration of AI also presents concerns related to data privacy, algorithmic bias, and the displacement of healthcare professionals. This study provides a thorough overview of these developments, offering insights into AI's future potential to revolutionize healthcare while addressing the ethical considerations necessary for its responsible adoption. The findings suggest that while AI has the potential to transform healthcare delivery, careful consideration of its implications is essential for ensuring its equitable and effective implementation. (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)

The debate about direct-to-consumer genetic testing has centred on whether consumers are the best judges of their own clinical care. Inthis article, I also examine whether the science of personalized medicine is really as advanced as its proponents claim, and how the availability of genetic markers affects decisions on who gets and does not get medical treatment.

Biomarkers are widely used not only as prognostic or diagnostic indicators, or as surrogate markers of disease in clinical trials, but also to formulate theories of pathogenesis. We identify two problems in the use of biomarkers in mechanistic studies. The first problem arises in the case of multifactorial diseases, where different combinations of multiple causes result in patient heterogeneity. The second problem arises when a pathogenic mediator is difficult to measure. This is the case of the oxidative stress (OS) theory (...) of disease, where the causal components are reactive oxygen species (ROS) that have very short half-lives. In this case, it is usual to measure the traces left by the reaction of ROS with biological molecules, rather than the ROS themselves. Borrowing from the philosophical theories of signs, we look at the different facets of biomarkers and discuss their different value and meaning in multifactorial diseases and system medicine to inform their use in patient stratification in personalized medicine. (shrink)