Increasing globalisation and advances in artificial reproductive techniques have opened up a whole new range of possibilities for infertile couples across the globe. Inter-country gestational surrogacy with monetary remuneration is one of the products of medical tourism meeting in vitro fertilisation embryo transfer. Filled with potential, it has also been a hot topic of discussion in legal and bioethics spheres. Fears of exploitation and breach of autonomy have sprung from the current situation, where there is no international regulation of surrogacy (...) agreements—only a web of conflicting national laws that generates loopholes and removes safeguards for both the surrogate and commissioning couple. This article argues the need for evidence-based international laws and regulations as the only way to resolve both the ethical and legal issues around commercial surrogacy. In addition, a Hague Convention on inter-country surrogacy agreements is proposed to resolve the muddled state of affairs and enable commercial surrogacy to demonstrate its full potential. (shrink)

Background: As frail older people might have difficulties in expressing themselves, their needs are often interpreted by others, for example, by significant others, whose information health care staff often have to rely on. This, in turn, can put health care staff in ethically difficult situations, where they have to choose between alternative courses of action. One aspect that might be especially difficult to express is that of existential loneliness. We have only sparse knowledge about whether, and in what way, the (...) views of frail older persons and their significant others concerning existential loneliness are in concordance. Objective: To contrast frail older (>75) persons’ experiences with their significant others’ perceptions of existential loneliness. Methods: A case study design was chosen for this study. Individual interviews with frail older persons (n = 15) and interviews with their significant others (n = 19), as well as field notes, served as a basis for the study. A thematic analysis was used to interpret data. Ethical considerations: This study was conducted in accordance with the principles of research ethics. Findings: The findings showed three themes: (1) Meaningless waiting in contrast to lack of activities, (2) Longing for a deeper connectedness in contrast to not participating in a social environment and (3) Restricted freedom in contrast to given up on life. Discussion: Knowledge about the tensions between older persons’ and their significant others’ views of existential loneliness could be of use as a basis for ethical reflections on the care of older people and in the encounter with their significant others. Conclusion: It is of importance that health care professionals listen to both the frail older person and their significant other(s) and be aware of whose voice that the care given is based on, in order to provide care that is beneficial and not to the detriment of the older person. (shrink)

In this article we present a phenomenological single-case study of a client’s experience of her therapist’s bodily movement in the context of narrative therapy. A client was interviewed regarding her experience of selected bodily movements of the therapist based on a video recording of one of her therapeutic sessions. The movements were analyzed through Maxine Sheets-Johnstone’s cardinal structures of movement while the interview was analyzed through a modification of Giorgi’s method for phenomenological psychology. We focused on the relationship between the (...) therapist’s bodily movement and therapeutic movement in the client and arrived at general structures of the client’s experience of being moved by movement. The experience comprises three core constituents: ‘shifts in sense of self’, ‘sense of togetherness’ and ‘feelings of mobility’, and reveals that the therapist’s bodily movements can lead to therapeutic changes compatible with the aim of narrative therapy. (shrink)

This study underscores The Lily and the Bird's response to despair in The Sickness unto Death. By suggesting in The Lily and the Bird that we look to nature's creatures to learn an attunement and responsiveness to our situation as physical creatures subject to finite constraints, Kierkegaard's text comes into dialogue with a form of misalignment portrayed in The Sickness unto Death as a refusal of the given, “the finite,” and “the necessary.” One way of seeking alignment in The Lily (...) and the Bird entails learning to hear and to answer within one's given environment, opening up the possibility of embodied joy. (shrink)

This article engages with A’s “Crop Rotation” in Either/Or—the “boredom” essay—as a source for serious thought on the modern crisis of faith. Exploring A’s portrayal of the modern subject as isolated and self-enclosed, a “bored” condition linked to its radical autonomy and self-directed existence, it suggests that A’s explanation for this condition still holds today: modern humans’ self-assertion (and hence self-isolation) emerges as a response to a profound loss of meaning. Through an existential reading of A’s essay, it highlights A’s (...) notion of “demonic pantheism” as illuminating what lies behind boredom, namely, a relatable experience of disillusionment following the loss of meaning—in other words, “existential doubt” or a crisis of faith. (shrink)

Stress in health care is affected by moral factors. When people are prevented from doing ‘good’ they may feel that they have not done what they ought to or that they have erred, thus giving rise to a troubled conscience. Empirical studies show that health care personnel sometimes refer to conscience when talking about being in ethically difficult everyday care situations. This study aimed to construct and validate the Stress of Conscience Questionnaire (SCQ), a nine-item instrument for assessing stressful situations (...) and the degree to which they trouble the conscience. The items were based on situations previously documented as causing negative stress for health care workers. Content and face validity were established by expert panels and pilot studies that selected relevant items and modified or excluded ambiguous ones. A convenience sample of 444 health care personnel indicated that the SCQ had acceptable validity and internal consistency (Cronbach’s alpha exceeded 0.83 for the overall scale). Explorative factor analysis identified and labelled two factors: ‘internal demands’ and ‘external demands and restrictions’. The findings suggest that the SCQ is a concise and practical instrument for use in various health care contexts. (shrink)

BackgroundPatients have the right to equal, respectful treatment. Nowadays, one third of patient complaints concern health care staff’s behavior towards patients. Ethically safe care requires ethical competence, which has been addressed as a core competence in physiotherapy. It has been defined in terms of character strength, ethical awareness, moral judgment skills in decision-making, and willingness to do good. The purpose of this study was to analyze the ethical competence of practicing physiotherapists.MethodA self-evaluation instrument (Physiotherapist’s Ethical Competence Evaluation Tool) based on (...) an analysis of a concept “ethical competence” was constructed in 2016 and physiotherapists (n = 839), working in public health services or private practice responded to the questionnaire.ResultsBased on the results, most of the physiotherapists evaluated themselves highly ethically competent in all areas of ethical competence, subscales being Strength, Awareness, Skills and Will. Willingness to do good was evaluated as highest, while character strength, including the strength to support ethical processes and speak on behalf of the patient, was evaluated the lowest. Physiotherapists most commonly consult a colleague when encountering an ethical problem. Other methods for problem solving are not very familiar, neither are the international or national ethical codes of conduct.ConclusionsThis was the first attempt to assess all aspects of ethical competence empirically in a clinical environment in physiotherapy, using a novel self-evaluation instrument. Even if physiotherapists evaluate themselves as competent in ethics, further exploration is needed for ethical awareness. Also the patients’ viewpoints about ethically competent care should be considered, to better ensure ethical safety of the patient. (shrink)

BackgroundThere is a permanent need to evaluate and develop the ethical quality of scientific research and to widen knowledge about the effects of ethical issues. Therefore we evaluated whether informed consent is related to implementation and success in a lifestyle intervention study with older research participants. There is little empirical research into this topic.MethodsThe subjects (n = 597) are a subgroup of a random population sample of 1410 men and women aged 57-78 years who are participating in a 4-year randomized (...) controlled intervention trial on the effects of physical exercise and diet on atherosclerosis, endothelial function and cognition. Data were collected in two steps: A questionnaire about informed consent was given to all willing participants (n = 1324) three months after the randomization. Data on implementation and success in the exercise and diet interventions were evaluated at 12 months by intervention-group personnel. The main purpose of the analysis procedure performed in this study was to identify and examine potential correlates for the chosen dependent variables and to generate future hypotheses for testing and confirming the independent determinants for implementation and success. The nature of the analysis protocol is exploratory at this stage.ResultsAbout half of the participants (54%) had achieved good results in the intervention. Nearly half of the participants (47%) had added to or improved their own activity in some sector of exercise or diet. Significant associations were found between performance in the interventions and participants' knowledge of the purpose of the study (p < 0.001), and between success in interventions and working status (p = 0.02), and the participants' knowledge of the purpose of the study (p = 0.04).ConclusionThe main finding of this study was that those participants who were most aware or had understood the purpose of the study at an early stage had also attained better results at their 12-month intervention evaluation. Therefore, implementation and success in intervention is related to whether subjects receive a sufficient amount and are able to comprehend the information provided i.e. the core principles of informed consent.Trial Registration(ISRCTN 45977199). (shrink)

Peut-on changer d’échelle sans changer de nature? Sans doute quantité de phénomènes sont altérés quand on étend leur domaine d’exercice : il y a plus qu’une différence de taille entre un jardin de quelques mètres carrés et un alignement de serres sur plusieurs hectares. La modernité coloniale s’est distinguée par cette sorte de foi en la « scalabilité » de la production. Son modèle est la plantation esclavagiste : un système fondé sur l’exploitation de vivants humains et non-humains qu’on coupe (...) de leur racine et de leur environnement natif. La logique des « économies d’échelle », la logique de l’expansion emprunte son idéologie à cette histoire et c’est pourquoi il est nécessaire de lui opposer un antidote : la description et l’invention de mondes non-scalables, où les agents ne sont pas interchangeables, où les réseaux de dépendance sont locaux, situés, et mutuellement transformateurs pour ceux qui y vivent et ceux qui en bénéficient. (shrink)

Nurses are responsible for the well-being and quality of life of many people, and therefore must meet high standards of technical and ethical competence. The most common form of ethical guidance is a code of ethics/professional practice; however, little research on how codes are viewed or used in practice has been undertaken. This study, carried out in six European countries, explored nurses’ opinions of the content and function of codes and their use in nursing practice. A total of 49 focus (...) groups involving 311 nurses were held. Purposive sampling ensured a mix of participants from a range of specialisms. Qualitative analysis enabled emerging themes to be identified on both national and comparative bases. Most participants had a poor understanding of their codes. They were unfamiliar with the content and believed they have little practical value because of extensive barriers to their effective use. In many countries nursing codes appear to be ‘paper tigers’ with little or no impact; changes are needed in the way they are developed and written, introduced in nurse education, and reinforced/implemented in clinical practice. (shrink)

Patient’s duties are a topical but little researched area in nursing ethics. However, patient’s duties are closely connected to nursing practice in terms of autonomy, the best purpose of care and rethinking from the patient’s perspective. This article is a metasynthesis (N = 11 original articles) of patient’s duties, aimed to create a tentative model. In this article, a tentative model called ‘right-based duties of a patient’ was constructed. With its aid, a coherent structure of patient’s duties within different roles (...) and objects of a patient can be defined. In addition, the ethical basis, prerequisites, outcomes and risks of patient’s duties can be named. In conclusion, so-called right-based duties of a patient constitute the basic argument. Patient’s duties are not unambiguous for all patients, and the global perspective to duties has been challenged. However, due to both conceptual and practical reasons, rethinking of patient’s duties is needed. (shrink)

Research has consistently shown ‘ability’ grouping (tracking) to be prey to poor practice, and to perpetuate inequity. A feature of these problems is inequitable and inaccurate practice in allocation to groups or ‘tracks’. Yet little research has examined whether such practices might be improved. Here, we examine survey and interview findings from a large-scale intervention study of grouping practices in 126 English secondary schools. We find that when schools are encouraged to allocate students and move them between groups according to (...) equitable principles by participation in a ‘best practice’ intervention, there is some increased equity of practice (i.e. a reduction in non-attainment factors used in allocation). However, the majority of schools continue to use subjective and potentially biased information to group students. Furthermore, some schools that claim to be using attainment setting appear to be using the inequitable practice of streaming. Our findings show that improvements in equity are constrained by operational and strategic factors, including timetabling, finance, and teachers’ values and beliefs relating to student ability and progression. We suggest strategies for encouraging schools to change their grouping practices, drawing on approaches for working with complex organisations. (shrink)

In Parkinson’s disease, the fronto-striatal network is involved in motor and cognitive symptoms. Working memory updating training engages this network in healthy populations, as observed by improved cognitive performance and increased striatal BOLD signal. This two-part study aimed to assess the feasibility of WM updating training in PD and measure change in cognition, movement and functional brain response in one individual with PD after WM updating training. A feasibility and single-subject study were performed in which patients with PD completed computerized (...) WM updating training. The outcome measures were the pre-post changes in criterion and transfer cognitive tests; cognitive complaints; psychological health; movement kinematics; and task-related BOLD signal. Participants in the feasibility study showed improvements on the criterion tests at post-test. FL displayed the largest improvements on the criterion tests and smaller improvements on transfer tests. Furthermore, FL reported improved cognitive performance in everyday life. A shorter onset latency and smoother upper-limb goal-directed movements were measured at post-test, as well as increased activation within the striatum and decreased activation throughout the fronto-parietal WM network. This two-part study demonstrated that WM updating training is feasible to complete for PD patients and that change occurred in FL at post-test in the domains of cognition, movement and functional brain response. (shrink)

Review of A. Szabolcsi, ed., Ways of Scope Taking (Kluwer, 1997).

Health care often involves ethically difficult situations that may disquiet the conscience. The purpose of this study was to develop a questionnaire for identifying various perceptions of conscience within a framework based on the literature and on explorative interviews about perceptions of conscience (Perceptions of Conscience Questionnaire). The questionnaire was tested on a sample of 444 registered nurses, enrolled nurses, nurses’ assistants and physicians. The data were analysed using principal component analysis to explore possible dimensions of perceptions of conscience. The (...) results showed six dimensions, found also in theory and empirical health care studies. Conscience was perceived as authority, a warning signal, demanding sensitivity, an asset, a burden and depending on culture. We conclude that the Perceptions of Conscience Questionnaire is valid for assessing some perceptions of conscience relevant to health care providers. (shrink)

BackgroundAddictive behavior of gambling, gaming and internet activity is partly a new research domain and has not been well investigated with regard to sexual minority populations. Although health disparities between sexual minorities and the general population are well documented, there is a lack of inclusion of sexual minorities in both research and clinic. Among lesbian, gay and bisexual populations certain features could be present that play a role for the development of addictive behaviors, such as social isolation and increased risk (...) of other psychiatric problems. The aim of this study was to investigate problem gambling, problem gaming and problematic internet behavior in a European context and if it is affected by sexual orientation status.MethodsAn online web-survey was distributed among web-panels in England, Poland, Switzerland, Italy, Spain, Denmark, and Sweden in 2017–2018.Result10 983 complete answers were collected. 7.1% of the participants had a sexual minority status. Regression models found that there was no difference in gambling, gaming and internet behavior among heterosexual and sexual minority men. Sexual minority women were associated with problematic gambling and gaming behavior, when also controlling for age and nationality. When also controlling for psychological distress, women defining as having another sexual minority status than lesbian and bisexual remained significant for having a problematic gaming behavior.ConclusionAn awareness of female sexual minority perspectives is relevant in facilities treating behavioral addiction as well as in future research in behavioral addiction. More research is needed in problematic gambling and gaming behavior in different sexual minority populations with regard to psychiatric comorbidity and living conditions. An inclusion of sexual minority groups defining as other than gay and bisexual is needed in future research. No significant differences were found between heterosexual and sexual minority men in adjusted analysis in this study. (shrink)

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information (...) governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research. (shrink)

Louise Brown's birth in 1978 heralded a new era not just in reproductive technology, but in the relationship between science, cells, and society. For the first time, human embryos could be created, selected, studied, manipulated, frozen, altered, or destroyed, outside the human body. But with this possibility came a plethora of ethical questions. Is it acceptable to destroy a human embryo for the purpose of research? Or to create an embryo with the specific purpose of destroying it for research? (...) In an attempt to construct ethical and legal frameworks for the new era of cellular reprogramming, legislators and ethicists have tried to distinguish between different kinds of biological entity. We treat cells differently depending on whether they are human or animal, somatic cells or gametes, and on whether they are embryos or not. But this approach to the ethics of cellular reprogramming is doomed to failure for the simple reason that cellular reprogramming in itself destroys the distinctions that the law requires to function. In this article, we explore the historical trajectory of cellular reprogramming and its relationship with ethics and society. We suggest that the early hype of embryo research has not obviously fulfilled expectations, but since new avenues of research are continuously opening, it is hard to say definitely that these promises have been broken. We explore the forthcoming challenges posed by the creation of DNA from scratch in the laboratory, and the implications of this for understandings of identity, privacy, and reproduction. We conclude that while ethics used to seek answers in biological facts, this is no longer possible, and a new approach is required. (shrink)

During its century-long unfolding, spreading in numerous directions, Husserlian phenomenology while loosening inner articulations, has nevertheless maintained a somewhat consistent profile. As we see in this collection, the numerous conceptions and theories advanced in the various phases of reinterpretations have remained identifiable with phenomenology. What conveys this consistency in virtue of which innumerable types of inquiry-scientific, social, artistic, literary – may consider themselves phenomenological? Is it not the quintessence of the phenomenological quest, namely our seeking to reach the very foundations (...) of reality at all its constitutive levels by pursuing its logos? Inquiring into the logos of the phenomenological quest we discover, indeed, all the main constitutive spheres of reality and of the human subject involved in it, and concurrently, the logos itself comes to light in the radiation of its force (Tymieniecka). Papers by: Kristana Arp, Gary Backhaus, Mafalda Blanc, Piotr Blaszczyk, Manuel Bremer, Jonathan Lahey Dronsfield, Peter Abumhenre Egbe, Jesus Adrian Escudero, Wayne Froman, Jorge Garcia-Gomez, David Grunberg, Dasuke Kamei, Arion Kelkel, Filip Kolen, Tze-wan Kwan, Leonard Lawlor, Grahame Lock, Nancy Mardas, Nikolay Milkov, Cezary J. Olbromski, Helena De Preester, Anna-Teresa Tymieniecka, Gertrudis Van de Vijver, Luca Vanzago, Anatoly Zotov. (shrink)

This volume marks a phase of accomplishment in the work of the World Phenomenology Institute in unfolding a dialogue between Occidental phenomenology and the Oriental/Chinese classic philosophy. Going beyond the stage of reception, the Oriental scholars show in this collection of studies their perspicacity and philosophical skills in comparing the concepts, ideas, the vision of classic phenomenology and Chinese philosophy toward uncovering their common intuitions. This in-depth probing aims at reviving Occidental thinking, reaching to its intuitive sources, as well as (...) providing Chinese thinking with a precise apparatus of expression toward its rejuvenation in a new significance. Studies by Korean and Chinese phenomenologists: Nam-In Lee, Inhui Park, Benjamin I. Schwartz, Anna-Teresa Tymieniecka, Sitansu Ray, Zhang Xian, Zhang Qingxiong, Tsung-I Dow, Ashok K. Gangadean, Yushiro Takei, Louise Sunderarajan, Gregory Tropea, James Sellmann, Tyong Bok Rhie, Sang-Ki Kim, Daniel Zelinski, Qingjie Wang, Calvin O. Schrag, Jung-Sun Han. (shrink)

The article refers to Helena Eilstein’s views: her analysis of biblical contradictions and a limited moral relativism (similar observations made by Leszek Kołakowski are also evoked). It classifies the types of contradictions found in the Bible and suggests how to deal with them. At times the conceptual apparatus created in the philosophy of science is used and a connection to scientific cognition is made, for foundations of philosophy of science can influence the attitude towards biblical contradictions. It emphasizes the (...) role of individual attitudes and the psychological conditionality of taking moral decisions, as well as the importance of shaping moral sensitivity. Metaphors play a double role in the Bible. Firstly, metaphorical interpretations eliminate contradictions. Secondly, metaphors are useful for shaping moral sensitivity. (shrink)

Tematem niniejszego artykułu jest próba odpowiedzi na pytanie, czy i jak zmienił się język niemiecki pod wpływem jego feministycznej krytyki. Wtym celu autorka analizuje dwa pochodzące z tygodnika "Der Spiegel" artykuły, z których jeden - Grete im Wunderland - ukazał się w 1996 roku, a drugi - Die Alpha-Mädchen - w roku 2007. Prezentowana ananliza opiera się na zainicjowanej przez Trömel-Plötz w 1978 r. feministycznej krytyce języka niemieckiego oraz postulowanych przez wyżej wymienioną oraz Louise F. Pusch zmianach tegoż języka.

Ellie Anderson had always known that she wanted to have children. Her mother, Louise, was aware of this wish. Ellie was designated male at birth, but according to news sources, identified as a girl from the age of three. She was hoping to undergo gender reassignment surgery at 18, but died unexpectedly at only 16, leaving Louise grappling not only with the grief of losing her daughter, but with a complex legal problem. Ellie had had her sperm frozen (...) before starting hormone treatment, specifically so that she would retain the chance of becoming a parent after her gender reassignment. Ellie had considered what might happen to the sperm if she died and was adamant that her children should be brought into the world. She made her mother promise to ensure that this would happen. But according to UK law, Ellie’s mother has no legal right to retain her sperm, or to use it to fulfil Ellie’s wishes. In this paper, we raise several key ethical questions on this case, namely: does a refusal to bring Ellie’s children into the world wrong her posthumously? Is Ellie’s mother morally entitled to use her daughter’s sperm as Ellie wished? Should the fact that Ellie was a minor at the time of her death or the fact that she was transgendered undermine her wish to have children? Can Ellie become a parent posthumously? We consider how these complex ethical questions could be approached. (shrink)

In a quiet London office, a software designer muses on the algorithms that will make possible the risk flags to be visualized on the screens of border guards from Heathrow to St Pancras International. There is, he says, ‘real time decision making’ – to detain, to deport, to secondarily question or search – but there is also the ‘offline team who run the analytics and work out the best set of rules’. Writing the code that will decide the association rules (...) between items of data, prosaic and mundane – flight route, payment type, passport – the analysts derive a novel preemptive security measure. This paper proposes the analytic of the data derivative – a visualized risk flag or score drawn from an amalgam of disaggregated fragments of data, inferred from across the gaps between data and projected onto an array of uncertain futures. In contrast to disciplinary and enclosed techniques of collecting data to govern population, the data derivative functions via ‘differential curves of normality’, imagining a range of potential futures through the association rule, thus ‘opening up to let things happen’ ( Foucault 2007 ). In some senses akin to the risk orientation of the financial derivative, itself indifferent to actual underlying people, places or events by virtue of modulated norms, the contemporary security derivative is not centred on who we are, nor even on what our data say about us, but on what can be imagined and inferred about who we might be – on our very proclivities and potentialities. (shrink)

In a 1955 lecture the physicist Richard Feynman reflected on the place of doubt within scientific practice. ‘Permit us to question, to doubt, to not be sure’, proposed Feynman, ‘it is possible to live and not to know’. In our contemporary world, the science of machine learning algorithms appears to transform the relations between science, knowledge and doubt, to make even the most doubtful event amenable to action. What might it mean to ‘leave room for doubt’ or ‘to live and (...) not to know’ in our contemporary culture, where the algorithm plays a major role in the calculability of doubts? I propose a posthuman mode of doubt that decentres the liberal humanist subject. In the science of machine learning algorithms the doubts of human and technological beings nonetheless dwell together, opening onto a future that is never fully reduced to the single output signal, to the optimised target. (shrink)

Many people accept, at least implicitly, what I call the asymmetry claim: the view that moral realism is more defensible than aesthetic realism. This article challenges the asymmetry claim. I argue that it is surprisingly hard to find points of contrast between the two domains that could justify their very different treatment with respect to realism. I consider five potentially promising ways to do this, and I argue that all of them fail. If I am right, those who accept the (...) asymmetry claim have a significant burden of proof. (shrink)

Policy discussions and corporate strategies on machine learning are increasingly championing data reuse as a key element in digital transformations. These aspirations are often coupled with a focus on responsibility, ethics and transparency, as well as emergent forms of regulation that seek to set demands for corporate conduct and the protection of civic rights. And the Protective measures include methods of traceability and assessments of ‘good’ and ‘bad’ datasets and algorithms that are considered to be traceable, stable and contained. However, (...) these ways of thinking about both technology and ethics obscure a fundamental issue, namely that machine learning systems entangle data, algorithms and more-than-human environments in ways that challenge a well-defined separation. This article investigates the fundamental fallacy of most data reuse strategies as well as their regulation and mitigation strategies that data can somehow be followed, contained and controlled in machine learning processes. Instead, the article argues that we need to understand the reuse of data as an inherently entangled phenomenon. To examine this tension between the discursive regimes and the realities of data reuse, we advance the notion of reuse entanglements as an analytical lens. The main contribution of the article is the conceptualization of reuse that places entanglements at its core and the articulation of its relevance using empirical illustrations. This is important, we argue, for our understanding of the nature of data and algorithms, for the practical uses of data and algorithms and our attitudes regarding ethics, responsibility and regulation. (shrink)

ABSTRACTThis article addresses the question of whether certain experiences that originate in causes other than bereavement are properly termed ‘grief’. To do so, we focus on widespread experiences of grief that have been reported during the Covid-19 pandemic. We consider two potential objections to a more permissive use of the term: grief is, by definition, a response to a death; grief is subject to certain norms that apply only to the case of bereavement. Having shown that these objections are unconvincing, (...) we sketch a positive case for a conception of grief that is not specific to bereavement, by noting some features that grief following bereavement shares with other experiences of loss. (shrink)

In the past few years, scholars have been questioning whether the current approach in data ethics based on the higher level case studies and general principles is effective. In particular, some have been complaining that such an approach to ethics is difficult to be applied and to be taught in the context of data science. In response to these concerns, there have been discussions about how ethics should be “embedded” in the practice of data science, in the sense of showing (...) how ethical issues emerge in small technical choices made by data scientists in their day-to-day activities, and how such an approach can be used to teach data ethics. However, a precise description of how such proposals have to be theoretically conceived and could be operationalized has been lacking. In this article, we propose a full-fledged characterization of ‘embedding’ ethics, and how this can be applied especially to the problem of teaching data science ethics. Using the emerging model of ‘microethics’, we propose a way of teaching daily responsibility in digital activities that is connected to the higher level ethical challenges discussed in digital/data ethics. We ground this microethical approach into a virtue theory framework, by stressing that the goal of a microethics is to foster the cultivation of moral virtues. After delineating this approach of embedding ethics in theoretical detail, this article discusses a concrete example of how such a ‘micro-virtue ethics’ approach could be practically taught to data science students. (shrink)

Abstract: In this paper I offer an account of a particular variety of perception of absence, namely, visual perception of empty space. In so doing, I aim to make explicit the role that seeing empty space has, implicitly, in Mike Martin's account of the visual field. I suggest we should make sense of the claim that vision has a field—in Martin's sense—in terms of our being aware of its limitations or boundaries. I argue that the limits of the visual field (...) are our own sensory limitations, and that we are aware of them as such. Seeing empty space, I argue, involves a structural feature of experience that constitutes our awareness of our visual sensory limitations, and thus, in virtue of which vision has a field. (shrink)

Is food’s naturalness conceptually connected to its healthiness? Answering the question requires spelling out the following: (1) What is meant by the healthiness of food? (2) What different conceptual meanings the term natural has in the context of food? (3) Are some of those meanings connected to the healthiness of food? In this paper the healthiness of food is understood narrowly as food’s accordance with nutritional needs of its eater. The connection of healthiness to the following five food-related senses of (...) the term “natural’’ is analyzed: naturalness as nutritive suitability, naturalness as moderate need satisfaction, naturalness as lack of human influence, naturalness as authenticity, and naturalness as familiarity. It is concluded that some very common current uses of the term “natural,” such as naturalness as lack of human influence, are not conceptually connected to the healthiness of food. Nevertheless, the first two senses of naturalness are strongly conceptually connected to healthiness in the food context and the last one may be indirectly related to it. Thus, desire for natural food is not necessarily mistaken and misguided. (shrink)

This book intervenes in the field of intersectionality studies: the integrative examination of the effects of racial, gendered, and class power on people’s lives. While “intersectionality” circulates as a buzzword, Anna Carastathis joins other critical voices to urge a more careful reading. Challenging the narratives of arrival that surround it, Carastathis argues that intersectionality is a horizon, illuminating ways of thinking that have yet to be realized; consequently, calls to “go beyond” intersectionality are premature. A provisional interpretation of intersectionality (...) can disorient habits of essentialism, categorial purity, and prototypicality and overcome dynamics of segregation and subordination in political movements. -/- Through a close reading of critical race theorist Kimberlé Williams Crenshaw’s germinal texts, published more than twenty-five years ago, Carastathis urges analytic clarity, contextual rigor, and a politicized, historicized understanding of this widely traveling concept. Intersectionality’s roots in social justice movements and critical intellectual projects—specifically Black feminism—must be retraced and synthesized with a decolonial analysis so its radical potential to actualize coalitions can be enacted. (shrink)

It is natural to think that sight is distinctive amongst the senses in that we typically see ordinary objects directly, rather than seeing a visual equivalent to a sound or odour. It is also natural to think that sounds and odours (like rainbows and holograms) are sensibilia, in that they are each intimately related to just one of our senses. In this chapter, I defend these natural-seeming claims. I present a view on which odours are indeed sensibilia, a claim that (...) is in need of defence when confronted with the suggestion that they are clouds of molecules. Furthermore, I argue that odours and rainbows, whilst both sensibilia, differ in ways that reflect their different roles for perceivers. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Women and Health Research:A Report from the Institute of MedicineAnna C. Mastroianni (bio), Ruth Faden (bio), and Daniel Federman (bio)In recent years, claims have been made by segments of the research community and by women's health advocacy groups that clinical research practices and policies have not benefitted women's health to the same extent as men's health. Central to these claims has been an assertion that women have been inadequately (...) represented as subjects of clinical studies and that as a result neither health conditions unique to women—e.g., menopause—nor women's manifestations of health problems affecting both sexes—e.g., heart disease—have been investigated sufficiently.The scientific community, including federal agencies that sponsor and regulate clinical studies, is increasingly responsive to these claims and is taking steps to raise the level of women's participation in clinical studies. Controversy and concern have surrounded these actions, however. Two of the claims that have been made are: (1) that women are more difficult to study than men because of their cyclical hormonal changes; and (2) that conducting gender-specific subgroup analyses would increase the size of study populations, raise the cost of studies, and thereby reduce the number of studies that could be performed with the limited resources available. In addition, controversy over the inclusion of women of childbearing potential and pregnant women has been particularly salient. Concerns have been expressed about avoiding potential harm to existing or potential fetuses and about the possible legal and financial ramifications of such harm. A further concern involves the perceived difficulties in enrolling women in studies and retaining them for the duration of the studies.Against this backdrop, the Office of Research on Women's Health at the National Institutes of Health (NIH) asked the Institute of Medicine (IOM) in October 1992 to establish the Committee on the Ethical and Legal Issues Relating to the Inclusion of Women in Clinical Studies. The Committee's charge was to: (1) consider the ethical and legal implications of including women, particularly pregnant women and women of childbearing potential, in clinical studies; (2) examine known instances of litigation regarding injuries to research subjects [End Page 55] and describe existing legal liabilities and protections; and (3) provide practical advice on these issues for consideration by NIH, institutional review boards (IRBs), and clinical investigators.The 16 Committee members came from diverse backgrounds: bioethics, law, epidemiology and biostatistics, public health policy, obstetrics and gynecology, clinical research, pharmaceutical development, social and behavioral sciences, and clinical evaluative sciences.1 Chaired by two of the authors of this article, Ruth Faden and Daniel Federman, and coordinated by the third, IOM Study Director Anna Mastroianni, the Committee met five times over a fourteen-month period, convened a one-and-one-half day invitational workshop, and commissioned several background papers. The Committee's deliberations were complicated by the announcement of new federal policies late in its term. Specifically, the Food and Drug Administration (FDA) issued guidelines (FDA 1993) to replace its 1977 guidelines, which prohibited the inclusion of women of childbearing potential in early phases of most clinical drug trials. In addition, Congress passed the NIH Revitalization Act of 1993 (P.L. 103-43), which contains provisions mandating the inclusion of women and racial and ethnic minorities in NIH-sponsored clinical research. In February 1994, the IOM Committee publicly issued its final report and recommendations, Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, publishing the workshop presentations and commissioned papers in a separate volume.Deliberations of the CommitteeA number of issues arose at the outset as the Committee considered its charge. A few members initially believed that verification of the underrepresentation of women relative to men in clinical studies as a whole was a prerequisite to providing policy recommendations. Others believed that such an examination would be an important contribution to the knowledge base, but that it was not necessary for addressing the Committee's charge. As summarized in the Committee's report, the Committee's research indicated that firm conclusions about the relative underrepresentation of women could not be drawn from the available data because of the lack of systematic information... (shrink)

Data science skills are rapidly becoming a necessity in modern science. In response to this need, institutions and organizations around the world are developing research data science curricula to teach the programming and computational skills that are needed to build and maintain data infrastructures and maximize the use of available data. To date, however, few of these courses have included an explicit ethics component, and developing such components can be challenging. This paper describes a novel approach to teaching data ethics (...) on short courses developed for the CODATA-RDA Schools for Research Data Science. The ethics content of these schools is centred on the concept of open and responsible science citizenship that draws on virtue ethics to promote ethics of practice. Despite having little formal teaching time, this concept of citizenship is made central to the course by distributing ethics content across technical modules. Ethics instruction consists of a wide range of techniques, including stand-alone lectures, group discussions and mini-exercises linked to technical modules. This multi-level approach enables students to develop an understanding both of “responsible and open science citizenship”, and of how such responsibilities are implemented in daily research practices within their home environment. This approach successfully locates ethics within daily data science practice, and allows students to see how small actions build into larger ethical concerns. This emphasises that ethics are not something “removed from daily research” or the remit of data generators/end users, but rather are a vital concern for all data scientists. (shrink)

ABSTRACTThere has considerable interest in bringing low/middle-income countries scientists into discussions on Open Data – both as contributors and users. The establishment of in situ data sharing practices within LMIC research institutions is vital for the development of an Open Data landscape in the Global South. Nonetheless, many LMICs have significant challenges – resource provision, research support and extra-laboratory infrastructures. These low-resourced environments shape data sharing activities, but are rarely examined within Open Data discourse. In particular, little attention is given (...) to how these research environments shape scientists’ perceptions of data sharing incentives. This paper expands on these issues of incentivizing data sharing, using data from a quantitative survey disseminated to life scientists in 13 countries in sub-Saharan Africa. This interrogated not only perceptions of data sharing amongst LMIC scientists, but also how these are connected to the research environm... (shrink)