Research has shown that paternal involvement positively impacts on child health and development. We aimed to develop a conceptual model of dimensions of fatherhood, identify and categorise methods used for linking fathers with their children in administrative data, and map these methods onto the dimensions of fatherhood. We carried out a systematic scoping review to create a conceptual framework of paternal involvement and identify studies exploring the impact of paternal exposures on child health and development outcomes using administrative data. We (...) identified four methods that have been used globally to link fathers and children in administrative data based on family or household identifiers using address data, identifiable information about the father on the child's birth registration, health claims data, and Personal Identification Numbers. We did not identify direct measures of paternal involvement but mapping linkage methods to the framework highlighted possible proxies. The addition of paternal National Health Service numbers to birth notifications presents a way forward in the advancement of fatherhood research using administrative data sources. (shrink)

Fraenkel dismissed Epode 11 with the statement that it ‘is an elegant piece of writing, but there is little real life in it’. By this ambiguously expressed comment he did not mean that the poem fails to ‘come alive’, but that it is artificial: he saw the poem as little more than an assembly of themes and motifs which recur in other genres, especially epigram and elegy. This has also been the perspective of some other twentieth-century scholars: Georg Luck's self-styled (...) ‘interpretation’ of the poem consists largely of a numbered list of thirteen motifs which the epode has in common with elegy and which in Luck's opinion were derived by Horace from Gallus. Alessandro Barchiesi, on the other hand, capitalizes on the perceived elegiac motifs in order to see the poem as a dynamic fusion of elegy and iambus. As for commentators, although older representatives seem to have regarded Epode 11 as generally self-explanatory, the poem receives increasing attention from Cavarzere, Mankin and Watson, the last of whom originally discussed some of its problems in a paper published twenty years earlier. Yet various problems still remain, and in this paper I propose to re-examine lines 1–6 and 15–18 in the hope that a clearer view of the epode as a whole may emerge. (shrink)

In the C case, the turnaround at SBM has been effected. Most significant is the company’s realization that it exists to serve the consumer and, through that service, the broader society. This brief case outlines the successes Hiwasa pushed SBM management to accomplish and introduces the challenges the company faced in 2009: primarily, continuing to build its corporate social responsibility approach and addressing environmental and social issues.

Although scars never disappear completely, in time most people will basically get used to them. In this paper I explore what it means to habituate to scars against the background of the phenomenological concept of incorporation. In phenomenology the body as Leib or corps vécu functions as a transcendental condition for world disclosure. Because of this transcendental reasoning, phenomenology prioritizes a form of embodied subjectivity that is virtually dis-embodied. Endowing meaning to one’s world through getting engaged in actions and projects (...) is most successful indeed when one’s body is “absent,” “transparent,” or, at least, if it is not in the center of one’s attention. This taken-for-granted nature can be disturbed by discomfort, disability, and disfigurement. Incorporation, so I explain, aims at maintaining or restoring the body’s taken-for-grantedness. My analysis of the case of a woman who successfully habituated to her mastectomy scar demonstrates, however, that habituation to a perceptible scar can only be understood partly in terms of incorporation. Next to a decrease of explicit attention for the scar and the discomfort it produces, the scar should also stop being a sign that refers to something else than itself. This is only possible, I argue, by taking the body’s materiality seriously, rather than it being wiped out as a result of transcendental reasoning. (shrink)

Given his known predilection for ontological parsimony, Ockham’s ontology of artifacts is unsurprisingly reductionist: artifacts are nothing over and above their existing and appropriately ordered parts. However, the case of artifacts is notable in that they are real objects that human artisans produce by bringing about a real change: they spatially rearrange existing natural thing(s) or their parts for the sake of some end. This article argues that the human contribution to the nature and production of artifacts is two-fold: (1) (...) the artisan’s cognitive grasp of her expertise and her decision to deploy that expertise are the two efficient causes necessary to explain the existence of an artifact, and (2) the purpose that the artisan had in mind when she decided to make an artifact fixes the function(s) of the artifact such that an artisan’s purpose is the final cause necessary to explain what an artifact is. Artifacts indeed exist, owing what they are and that they are to intelligent and volitional human activity, which Ockham never denies. The article submits that a myopic focus on Ockham’s indisputable reductionism does not exhaust what is metaphysically interesting and relevant about artifacts. (shrink)

Our daily experience, dominated by the corporate clock that so many of us contort ourselves to fit inside, is destroying us. It wasn't built for people, it was built for profit. This is a book that tears open the seams of reality as we know it-the way we experience time itself-and rearranges it, reimagining a world not centered around work, the office clock, or the profit motive. Explaining how we got to the point where time became money, Odell offers us (...) new models to live by--inspired by pre-industrial cultures, ecological, and geological time--that make a more humane, more hopeful way of living seem possible. In this dazzling, subversive, and deeply hopeful reframing of time, Jenny Odell takes us on a journey through other temporal habitats. As planet-bound animals, we live inside shortening and lengthening days, alongside gardens growing, birds migrating, and cliffs eroding. The stretchy quality of waiting and desire, the way the present may suddenly feel marbled with childhood memory, the slow but sure procession of a pregnancy, or the time it takes to heal from injuries--physical or emotional. Odell urges us to become stewards of these different rhythms of life, to imagine a life, identity, and source of meaning outside of the world of work and profit, and to understand that the trajectory of our lives--or the life of the planet--is not a foregone conclusion. In that sense, "saving" time-recovering its fundamentally irreducible and inventive nature-could also mean that time saves us. (shrink)

The desire to self-improve is probably as old as humanity: most of us want to be smarter, more athletic, more beautiful, or more talented. However, in the light of an ever increasing array of possibilities to enhance our capacities, clarity about the purpose and goal of such efforts becomes crucial. This is especially true when decisions are made for children, who are exposed to their parents’ plans and desires for them under a notion of increasing wellbeing. In recent years, cognitive (...) enhancement has become a popular candidate for the promotion of wellbeing; welfarists even impose a moral duty on parents to cognitively enhance their children for the sake of their wellbeing. In this article, I aim to show that welfarists are mistaken in inferring such a moral obligation from the potential benefit of cognitive enhancement. In support of this, I offer three arguments: the vagueness of wellbeing as a theoretical concept means it becomes impossible to apply in practice; the link between cognition and wellbeing is far from unequivocal; and quantification issues with regard to cognition make a duty impossible to discharge. In conclusion, I reject the welfarist approach as a justification for a parental moral obligation to cognitively enhance children. (shrink)

Se reconoce que la responsabilidad social empresarial (RSE) genera un impacto positivo en el desempeño de los negocios, principalmente en la gran empresa, sin embargo, su sostenibilidad en las PYMEs es debatida. Este artículo propone un modelo de RSE para PYMEs desarrollado a partir de una revisión bibliográfica y que luego fue examinado en un grupo de microempresas que practican RSE. A través del análisis narrativo se encontró que es factible realizar acciones de RSE en estos negocios, pero hay que (...) tomar en cuenta la familia, el trabajo colaborativo y el apoyo institucional como factores adicionales que influencian su sostenibilidad. (shrink)

Philosophy & Social Criticism, Volume 48, Issue 4, Page 642-651, May 2022. Academic freedom in China is unquestionably under threat from various quarters. Yet the assumption that only the logics of authoritarian Communist Party power shape the terrain in which scholars operate provides us with a limited perspective on these threats. The Chinese academy has become deeply entangled with transnational forces, and is increasingly driven by similar business logics to those in play in universities around the world. We argue that (...) these forces too contribute to the context for the exercise of academic freedom and its restriction. As is the case elsewhere, discourses around developing the national ‘knowledge economy’ and related logics of securitisation around knowledge production create conditions in which some forms of academic research are prioritised over others. Echoing the ‘culture wars’ plaguing the academy in many other countries, the research agendas most under threat in China are ones that connect to transnational movements and struggles, especially those focussed on labour and class, gender and feminism, race and ethnicity and human rights. In this article, we outline what we see as the key forces shaping the landscape for academic freedom in China, with a concentration on areas of research and teaching in the social sciences and humanities that are most at risk in the current conjuncture. (shrink)

Philosophy & Social Criticism, Volume 48, Issue 4, Page 642-651, May 2022. Academic freedom in China is unquestionably under threat from various quarters. Yet the assumption that only the logics of authoritarian Communist Party power shape the terrain in which scholars operate provides us with a limited perspective on these threats. The Chinese academy has become deeply entangled with transnational forces, and is increasingly driven by similar business logics to those in play in universities around the world. We argue that (...) these forces too contribute to the context for the exercise of academic freedom and its restriction. As is the case elsewhere, discourses around developing the national ‘knowledge economy’ and related logics of securitisation around knowledge production create conditions in which some forms of academic research are prioritised over others. Echoing the ‘culture wars’ plaguing the academy in many other countries, the research agendas most under threat in China are ones that connect to transnational movements and struggles, especially those focussed on labour and class, gender and feminism, race and ethnicity and human rights. In this article, we outline what we see as the key forces shaping the landscape for academic freedom in China, with a concentration on areas of research and teaching in the social sciences and humanities that are most at risk in the current conjuncture. (shrink)

Academic freedom in China is unquestionably under threat from various quarters. Yet the assumption that only the logics of authoritarian Communist Party power shape the terrain in which scholars operate provides us with a limited perspective on these threats. The Chinese academy has become deeply entangled with transnational forces, and is increasingly driven by similar business logics to those in play in universities around the world. We argue that these forces too contribute to the context for the exercise of academic (...) freedom and its restriction. As is the case elsewhere, discourses around developing the national ‘knowledge economy’ and related logics of securitisation around knowledge production create conditions in which some forms of academic research are prioritised over others. Echoing the ‘culture wars’ plaguing the academy in many other countries, the research agendas most under threat in China are ones that connect to transnational movements and struggles, especially those focussed on labour and class, gender and feminism, race and ethnicity and human rights. In this article, we outline what we see as the key forces shaping the landscape for academic freedom in China, with a concentration on areas of research and teaching in the social sciences and humanities that are most at risk in the current conjuncture. (shrink)

"As a doctor, I make every effort to strengthen the belief in immortality, especially with older patients when such questions come threateningly close. For, seen in correct psychological perspective, death is not an end but a goal, and life's inclination towards death begins as soon as the meridian is past."--C.G. Jung, commentary on The Secret of the Golden FlowerHere collected for the first time are Jung's views on death and immortality, his writings often coinciding with the death of the most (...) significant people in his life. The book shows many of the major themes running throughout the writings, including the relativity of space and time surrounding death, the link between transference and death, and the archetypes shared among the world's religions at the depths of the Self. The book includes selections from "On Resurrection," "The Soul and Death," "Concerning Rebirth," "Psychological Commentary on The Tibetan Book of the Dead" from the Collected Works, "Letter to Pastor Pfafflin" from Letters, and "On Life after Death.". (shrink)

Does the real difference between non-consequentialist and consequentialist theories lie in their approach to value? Non-consequentialist theories are thought either to allow a different kind of value (namely, agent-relative value) or to advocate a different response to value ('honouring' rather than 'promoting'). One objection to this idea implies that all normative theories are describable as consequentialist. But then the distinction between honouring and promoting collapses into the distinction between relative and neutral value. A proper description of non-consequentialist theories can only (...) be achieved by including a distinction between temporal relativity and neutrality in addition to the distinction between agent-relativity and agent-neutrality. (shrink)

The ever increasing ability of medical technology to reshape the human body in fundamental ways—from organ and tissue transplants to reconstructive surgery and prosthetics—is something now largely taken for granted. But for a philosopher, such interventions raise fundamental and fascinating questions about our sense of individual identity and its relationship to the physical body. Drawing on and engaging with philosophers from across the centuries, Jenny Slatman here develops a novel argument: that our own body always entails a strange dimension, (...) a strangeness that enables us to incorporate radical physical changes. (shrink)

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While (...) conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person. (shrink)

Catholic legal and doctrinal tradition defined two main cases for the canonization of saints: until very recently, sainthood was related either to martyrdom or to the heroic practice of virtues, ascertained through a well-defined judicial procedure. In 2017, Pope Francis renewed this ancient tradition by introducing a third case, consisting in the “offering of life”, namely the sacrifice of one’s life in the name of charity, intended as Christian love for the others. The “offering of life” is placed at the (...) center of an ongoing process of mediation between papal authority, the judicial praxis of the causes for canonization, and ecclesiastic law. The introduction of this new type of sainthood can be explained in light of the growing difficulty to apply the two traditional grids of behavior established by the Church in the evaluation of the life of new kinds of persons who enjoy a widespread fame of sanctity, but are not conform to the strict jurisprudential criteria of martrydrom and heroicity. Therefore, the debate surrounding the “offering of life” entails a dialectics between the necessity of a rationalized set of models, providing precise—and thus evaluable—“narrative programs” and defining a circumscribed number of canonizable human types, and the unprecedented multiplication of instances of sanctity in the contemporary world. (shrink)

The focus of much sensory language research has been on vocabulary and codability, not how language is used in communication of sensory perceptions. We make a case for discourse-oriented research about sensory language as an alternative to the prevailing vocabulary orientation. To consider the language of sound in authentic textual data, we presented participants with 20 everyday sounds of unknown sources and asked them to describe the sounds in as much detail as possible, as if describing them to someone who (...) could not hear them. We explored how the participants use language to describe these sounds. Do they describe their listening experiences (stressful), sound properties (intermittent beeping), and/or the events that caused the sounds (eating an apple)? The results show that out of these three soundscape elements, events are the most frequent and most indispensable element. We let the results from the study illustrate the need for more discursive data in studies of sensory language and argue that there is no designated language of sound. Our study highlights that in order to account for sensory language use, we need an analytical framework that accommodates discursive language in a non-trivial way beyond stable couplings between individual words and meanings. (shrink)

In this essay, I argue that to create a genomics that offers more gifts than weights, central attention must be paid to questions of justice. This will require expanding bioethical imaginations so that they grasp and can respond to questions of structural inequity. It will necessitate building novel coalitions and collaborations that turn the attention of bioethical governance away from narrow individual questions such as, “Do I consent?” and toward the broader collective question, is this just? What kind of lives (...) and collectivities are made possible? What rights and principles should govern them? The essay ends with one example of this novel coalition building arising from the Science and Justice Research Center at the University of California, Santa Cruz. It draws lessons from this effort to build new alliances that bridge the social sciences and natural sciences, arts and engineering, to create new kinds of training and thinking that create a genomics that more adequately responds to fundamental questions of justice. (shrink)

El articulo analiza experiencias de corporeidad de mujeres excombatientes de las FARC-EP, a partir de una investigación sociocrítica, fenomenológica y feminista, que implementó estrategias dialógicas, participativas, contextualizadas y problematizadoras. Los resultados describen los órdenes discursivos insurgentes en torno a la igualdad, los procesos de socialización que moldean cuerpos militantes y a la vez los controlan desde lo normativo; frente a estos últimos se vislumbran prácticas de fuga que evidencian las tensiones entre el orden insurgente y el de la vida civil. (...) Se concluye que el grupo armado moldea una subjetividad que combina elementos de las construcciones de género del contexto campesino de origen y referentes ideológicos y prácticos del contexto bélico que se esfuerza por configurar cuerpos fuertes y disciplinados. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, ranging (...) from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

One of Sallust's main points in this preface is that individuals should strive to attaingloria, i.e. should be spoken highly of by others. With this in mind, the commentators seem agreed thatsilentioin the opening sentence must be taken in a passive sense: ‘silentioexpresses not a state in which one says nothing, but a state in which nothing is said about one, i.e. “obscurity”’. The sequence of ideas in the first chapter makes this interpretation seem certain.

One of the most famous inscriptions to have survived from ancient Rome is the acta of the Ludi Saeculares of 17 b.c., and one of the most evocative of all epigraphic sentences occupies a line to itself : Carmen composuit Q. Horatius Flaccus. This reference to the author of the Carmen Saeculare, says Fraenkel, ‘was the result of a carefully considered decision of the highest authorities’. The degree of careful consideration is initially evident from the prominent positioning of the poet's (...) name directly above those of Augustus and Agrippa in the following line. It will also be noticed that the sentence concludes with a clausula which is one of Cicero's favourites. A further refinement emerges, however, if the poet's name is spelled out in full, something precluded by the naming conventions of the inscription:Cārmēn cōmpŏsŭīt ´ Quīntŭs Hŏrātĭūs | Flaccus.The inscribed sentence incorporates an Asclepiad line, the ‘signature’ metre of Odes 1–3, which are framed by Horace's only two poems in stichic Asclepiads. In identifying the author of the Carmen Saeculare, the sentence also acknowledges the collection of poems which won him the commission. (shrink)

Since a problematic passage in Virgil'sAeneid(10.366–7) shows the same influence of Sallust (Cat.58–60) as do the dozen lines preceding and following, it should not be deleted, as has been suggested.

I develop a theory of counterfactuals about relative computability, i.e. counterfactuals such as 'If the validity problem were algorithmically decidable, then the halting problem would also be algorithmically decidable,' which is true, and 'If the validity problem were algorithmically decidable, then arithmetical truth would also be algorithmically decidable,' which is false. These counterfactuals are counterpossibles, i.e. they have metaphysically impossible antecedents. They thus pose a challenge to the orthodoxy about counterfactuals, which would treat them as uniformly true. What’s more, I (...) argue that these counterpossibles don’t just appear in the periphery of relative computability theory but instead they play an ineliminable role in the development of the theory. Finally, I present and discuss a model theory for these counterfactuals that is a straightforward extension of the familiar comparative similarity models. (shrink)

Contesting Conformity investigates the writings of Tocqueville, Mill, and Nietzsche in order to examine the relationship between non-conformity and modern democracy. Jennie Ikuta argues that non-conformity is an intractable issue for democracy while non-conformity is often important for cultivating a just polity, non-conformity can also undermine democracy. Democracy therefore needs non-conformity, but not in an unconditional way. This book examines this intractable relationship, and offers resources for navigating the relationship in contemporary democracies in ways that promote justice and freedom.

While Caesar as man of letters is most famous for his commentarii, it should not be forgotten that he also wrote two volumes on Analogy and was the author of various verses, one set of which, on the comic playwright Terence and his relationship to Menander, runs as follows : tu quoque, tu in summis, o dimidiate Menander,poneris, et merito, puri sermonis amator.lenibus atque utinam scriptis adiuncta foret uis,comica ut aequato uirtus polleret honorecum Graecis neue hac despectus parte iaceres! 5unum (...) hoc maceror ac doleo tibi deesse, Terenti. (shrink)

Braun explores the use of digital twin technology in medicine with a particular emphasis on the question of how such simulations can represent a person.1 In defining some first conditions for ethically justifiable forms of representation of digital twins, he argues that digital twins do not threaten an embodied person, as long as that person retains control over their simulated representation via dynamic consent, and ideally with the option to choose both form and usage of the simulation. His thoughtful elaboration (...) provides insight into the challenges inherent in interactions between a person and their digital twin, emphasising the modes of control required to respect personal modes of freedom. This individual-centric approach to the question of representation leaves out the important ethical consideration of ensuring that all, not merely some, can be represented. Braun describes dynamic consent as a necessary mode of control, arguing that where a person is unable to give consent, ‘such simulations threaten to become illegitimate representations. They would then shift the kind of interaction from representation to illegitimate forms of prediction or surveillance and thereby could lead to infringements to individual modes of freedom.’ Consequently, the implementation of digital twin technology in healthcare would seem to exclude the most vulnerable members of society from participation in and benefiting from medical innovation, …. (shrink)

One famous debate in contemporary epistemology considers whether there is always one unique, epistemically rational way to respond to a given body of evidence. Generally speaking, answering “yes” to this question makes one a proponent of the Uniqueness thesis, while those who answer “no” are called “permissivists”. Another influential recent debate concerns whether non-truth-related factors can be the basis of epistemic justification, knowledge, or rational belief. Traditional theories answer “no”, and are therefore considered “purists”. However, more recently many theorists have (...) argued to the contrary, claiming that impurist factors, such as practical stakes, can sometimes encroach or even override truth-related considerations. This paper bridges the two debates by presenting and defending what I call “Impurist Permissivism”. I support Impurist Permissivism by showing how it can resist Roger White’s famous Argument from Arbitrariness (2005). (shrink)

This paper examines the crowded landscape of conferences and organizations within which the International Foundation for Science (IFS) was shaped in the early 1970s. The IFS aimed to support scientists from developing countries, circumventing the bureaucracy of established international organizations such as UNESCO and the Organization for Economic Co-operation and Development (OECD). The new foundation was a potential rival to such institutions, which ironically provided the conditions essential to its emergence. Their conferences, board meetings and assemblies, where scientists and policy (...) makers convened, provided key infrastructure for the development of the IFS. This infrastructure appears simultaneously both as an almost invisible feature of international science policy, and as a political problem. The solution to this problem was Stockholm: a geographical place that was also placeless, occupying both national and international status, desirable in its political, scientific and geographical neutrality. In an organizational context, academies and scientific societies who found their role circumscribed by existing international institutions used the IFS to argue for their particular role and expertise in funding and promoting scientific development. Geographically and politically, neutral Sweden provided a setting which was located between East and West, and which added to the country's own reputation for championing the causes of developing nations. (shrink)

The early literature on base of the pyramid strategies argued that multinational enterprises can contribute significantly to poverty alleviation of the poorest population in the world. An emergent perspective suggests that the solution to poverty lies within the BOP itself. Here, entrepreneurship within the BOP population is seen as the more credible solution to poverty. In this Special Issue introduction, we briefly present how the literature has further shifted the discussion of BOP strategies toward issues such as innovation, networks, business (...) models, and sustainability at the BOP. This analysis signals a gap in our knowledge related to the success factors in business models of BOP entrepreneurs, with attention to economic, social, and environmental impacts. We present the five articles accepted for publication in this Special Issue, of which three contribute to our knowledge of BOP business models and two to our knowledge of sustainability at the BOP. In conclusion, we propose several avenues for future research. (shrink)

Informed by Critical Race Theory, this quantitative study supports civic educators in understanding the role of classroom climate and racial identity in students’ civic engagement during a statewide middle school civics mandate (n = 4707). Findings reveal that students of color experience higher civic engagement and lower civic attitude scores than white-identifying peers, after controlling for school, classroom, and affluence indicators. Students’ perception of whiteness (or perhaps majority status) appeared to correlate with positive civic knowledge and civic attitude, but relative (...) civic inaction. These findings suggest differences in civic outcomes as early as middle school between white-identifying students and students of color. Such differences offer implications for civic education interventions that address not only effective instruction, but civic inequities, students’ perceived agency, and curricular content. (shrink)

The link between alcohol consumption and cancer is well established, but public awareness of the risk remains low. Mandated warning labels have been suggested as a way of ensuring “informed choice” about alcohol consumption. In this article we explore various ethical issues that may arise in connection with cancer warning labels on alcoholic beverages; in particular we highlight the potentially questionable autonomy of alcohol consumption decisions and consider the implications if the autonomy of drinking behavior is substantially compromised. Our discussion (...) demonstrates the need for the various ethical issues to be considered and addressed in any decision to mandate cancer warning labels. (shrink)

This article contributes to a more nuanced and contextual approach to women’s decision-making concerning their stored IVF (in vitro fertilisation) embryos through attempting to craft a space for the expression of the complex, and contradictory, emotions attached to these decisions, unhooked from any notion of abstract moral status inhering in the embryo itself. Women struggle to express the confounding nature of the relationship to the stored IVF embryo as something of-the-body but not within the body, neither self nor other, person (...) nor thing. In order to try to address this sense of the ineffable, I draw in this article upon a series of images by German-born American artist, Kiki Smith. The article explores three major themes, each alongside one of Smith’s artworks connecting to an experience of discomfort or confounding unease. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...) Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

In this paper I explore the various meanings of embodiment from a patient’s perspective. Resorting to phenomenology of health and medicine, I take the idea of ‘lived experience’ as starting point. On the basis of an analysis of phenomenology’s call for bracketing the natural attitude and its reduction to the transcendental, I will explain, however, that in medical phenomenological literature ‘lived experience’ is commonly one-sidedly interpreted. In my paper, I clarify in what way the idea of ‘lived experience’ should be (...) revisited and, subsequently, what this reconsideration means for phenomenological research on embodiment in health and medicine. The insight that the body is a condition of possibility for world-disclosing yet, at the same time, itself conditioned by this world forces us to not only zoom in on the body’s subject-side, but also on its object-side. I argue that in order to render account for this double body ontology, phenomenology should include empirical sociological analyses as well. I thus argue in favor of the idea of a socio-phenomenology. Drawing on material from my own research project on embodied self-experiences after breast surgery, I show how this approach can be fruitful in interpreting the impact of disfigurements on a person’s embodied agency, or a person’s ‘I can’. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. -/- Today, it is easy to donate (...) blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. -/- Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

This article is based on an online ethnographic study of Dutch women who use YouTube as a medium to document their contested illness experiences. During 13 months of observations between 2017 and 2019, we followed a sample of 16 YouTubers, and conducted an in-depth analysis of 30 YouTube videos and of 7 interviews. By adopting a ‘praxiographic’ approach to social media, and by utilising insights from phenomenological theory, this study teases out how bodies are ‘done’ in (the making of) these (...) YouTube videos. We describe three types of bodies: (1) inert bodies, (2) experienced bodies, and (3) authentic bodies. Ultimately, this study shows how vlogging about contested illness is a practice in which bodies are continually (re)configured, and through which the ‘invisibility’ of a sufferer’s condition can obtain social visibility. (shrink)

Phenomenology of illness and abnormality Habitually, illness or disease is considered as something abnormal. Therefore, the distinction between health/illness is often conflated with the distinction normal/abnormal. Inspired by Kurt Goldstein’s work, Merleau-Ponty makes clear, however, that abnormality does not automatically coincide with pathology. It is also interesting to note that Merleau-Ponty nowhere uses the term “abnormal” to indicate the opposite of the normal person. Similar to Georges Canguilhem he uses the pair “the normal (person)” (le normal) – “the sick person”, (...) “the pathological” (le malade, le pathologique). As Goldstein and Canguilhem make more explicit than Merleau-Ponty, the abnormal person or “deviant” is very often not sick. Instead of approaching physical symptoms from an external or statistical view (which might lead to the conclusion that something is abnormal), they claim that sickness should be defined by the patient’s own lived experience. Merleau-Ponty shares this view, but for different reasons. Goldstein and Canghuilhem, both trained clinicians, believe that patients’ own experiences should be central in clinical practice instead of objectifying measurements and tests. For Merleau-Ponty, the phenomenologist, objective physical features have no place within his phenomenology of lived bodily experience. Bracketing positivist scientific insights, phenomenology also excludes biomedical statistics from its analysis. If we assume that abnormality is a result from a comparison with what is statistically seen as normal, this means that a phenomenology of abnormal embodiment might seem a contradiction in terms. In this paper, however, I would like to show that abnormal embodiment can also be approached from a phenomenological perspective. While drawing on some ideas by Hacking on the history of statistical reasoning, I demonstrate how the statistics of abnormality directly interconnects with lived experience. Hacking explains how the descriptive “average” or “mean” has become the normative “normal”. Because our world is in many ways determined by averages, it is an illusion to think that phenomenology can just bracket statistics. The one who appears physically as abnormal can, comparable to the one who is ill, experience that his or her embodied possibilities to deal with the world dwindle. What I show in this article is that even though a clear distinction can be made between illness and abnormality, both can be accompanied by a reduction or disruption of the “I can”. (shrink)

Boorse’s biostatistical theory states that diseases should be defined in ways that reflect disturbances of biological function and that are objective and value free. We use three examples from contemporary medicine that demonstrate the complex issues that arise when defining the boundaries of disease: polycystic ovary syndrome, chronic kidney disease, and myocardial infarction. We argue that the biostatistical theory fails to provide sufficient guidance on where the boundaries of disease should be drawn, contains ambiguities relating to choice of reference class, (...) and is out of step with medical processes for identifying disease boundaries. Although proponents of the biostatistical theory might regard these practical issues as irrelevant to the aim of providing a theoretical account of disease, we take them to indicate the need for a theoretical account that is adequate for current needs—including limiting new forms of medicalization that are driven by the identification of disease based on dysfunction. Our processes for determining the boundaries for disease need to recognize that there is no value-free method for making these decisions. (shrink)