When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if such (...) a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

PurposeTo explore and describe a trained communication partner’s use of responsive strategies in dyadic interaction with adults with Rett syndrome.IntroductionResponsive partner strategies facilitate social, communicative, and linguistic development. The common feature is that the communication partner responds contingently to the other’s focus of attention and interprets their acts as communicative. Research on responsive partner strategies that involves individuals with significant communication and motor disabilities remains sparse. The same applies to if, and how, the use of communication aids impacts on the (...) partner’s use of responsive strategies.Materials and methodsA therapist, trained in responsive partner strategies and aided communication interacted during 14 sessions with each of three participants. The participants were adults with Rett syndrome. A gaze-controlled device and responsive strategies were used during all sessions. The Responsive Augmentative and Alternative Communication Style scale was used to assess the partner’s responsiveness. RAACS consists of 11 items including ratings of to what extent the partner is being attentive to, confirms, and expands the individual’s communication. During eight of the 14 sessions, aided AAC Modelling was also used, i.e., the communication partner pointed at symbols on the gaze-controlled device while interacting. In addition to RAACS, each time the communication partner confirmed or expanded on communication when the participants used the gaze-controlled device and the participants did not use the gaze-controlled device was counted. Descriptive statistics were used to present the results. Non-parametric tests were used to compare means between the two conditions and between participants.ResultsInter-rater agreement for the different RAACS items ranged from 0.73 to 0.96 and was thus found to be fair to excellent. The communication partner’s use of responsive strategies varied when communicating with different participants and the scores were higher when aided AAC modeling was used. The communication partner’s number of responses and use of responsive strategies were higher when the participants communicated through a gaze-controlled device.ConclusionThe communication partner’s use of responsive and scaffolding strategies is not a fixed construct but varies in interactions with different non-speaking persons. The same is true whether the non-speaking person uses a gaze-controlled device with digitized speech or not. (shrink)

The present study assessed business students’ responses to an innovative interactive presentation on academic integrity that employed quoted material from previous students as launching points for discussion. In total, 15 business classes ( n = 412 students) including 2nd, 3rd and 4th year level students participated in the presentations as part of the ethics component of ongoing courses. Students’ perceptions of the importance of academic integrity, self-reports of cheating behaviors, and factors contributing to misconduct were examined along with perceptions about (...) the presentation. Discussion sessions revealed that academic misconduct is a complex issue. For example, knowledge of what constitutes misconduct was not consistent across domains (e.g. exam contexts versus group work), penalties were not wholly known, and there was variation in perceived responsibility for reporting and representing academic integrity. Survey measures revealed that self-reported academic misconduct was more prevalent than expected with only 7.5% of students indicating they had never cheated in any way. Furthermore, results showed gender and year of study as predictive factors for issues related to academic misconduct. In general, students were receptive to this form of presentation. The implications of such instructional interventions for enhancing ethical behaviors in higher education classrooms are discussed. (shrink)

Research on animal-assisted interventions has increased massively in the last few years. But it is still not clear how AAIs work and how important the animal is in such interventions. The aim of this systematic review was to compile the existing state of knowledge about the working mechanisms of AAIs. We searched 12 major electronic databases for previous AAI studies with active control groups. Of 2001 records identified, we included 172 studies in the systematic review. We extracted previously published hypotheses (...) about working mechanisms and factors that have been implicitly considered specific or non-specific in AAI research by categorizing control conditions using content analysis. We analyzed the categories using descriptive statistics. We found that 84% of the included studies mentioned a hypothesis of working mechanisms, but 16% did not define specific hypotheses. By analyzing their control conditions, we found that in most controlled studies, the animal or the interaction with the animal was implicitly considered as a specific factor for the effects of the AAI. Non-specific factors such as therapeutic aspects, social interactions, or novelty have also been controlled for. We conclude that AAI research still cannot answer the question of how and why AAIs work. To address this important research gap, we suggest using component studies with innovative control conditions and results from placebo research to address both the specific and non-specific, contextual factors of AAIs to disentangle its mechanisms.Systematic Review Registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=158103, identifier: CRD42020158103. (shrink)

Purpose This paper aims to formalize long-term trajectories of human civilization as a scientific and ethical field of study. The long-term trajectory of human civilization can be defined as the path that human civilization takes during the entire future time period in which human civilization could continue to exist. -/- Design/methodology/approach This paper focuses on four types of trajectories: status quo trajectories, in which human civilization persists in a state broadly similar to its current state into the distant future; catastrophe (...) trajectories, in which one or more events cause significant harm to human civilization; technological transformation trajectories, in which radical technological breakthroughs put human civilization on a fundamentally different course; and astronomical trajectories, in which human civilization expands beyond its home planet and into the accessible portions of the cosmos. -/- Findings Status quo trajectories appear unlikely to persist into the distant future, especially in light of long-term astronomical processes. Several catastrophe, technological transformation and astronomical trajectories appear possible. -/- Originality/value Some current actions may be able to affect the long-term trajectory. Whether these actions should be pursued depends on a mix of empirical and ethical factors. For some ethical frameworks, these actions may be especially important to pursue. (shrink)

We apply Benacerraf’s distinction between mathematical ontology and mathematical practice to examine contrasting interpretations of infinitesimal mathematics of the seventeenth and eighteenth century, in the work of Bos, Ferraro, Laugwitz, and others. We detect Weierstrass’s ghost behind some of the received historiography on Euler’s infinitesimal mathematics, as when Ferraro proposes to understand Euler in terms of a Weierstrassian notion of limit and Fraser declares classical analysis to be a “primary point of reference for understanding the eighteenth-century theories.” Meanwhile, scholars like (...) Bos and Laugwitz seek to explore Eulerian methodology, practice, and procedures in a way more faithful to Euler’s own. Euler’s use of infinite integers and the associated infinite products are analyzed in the context of his infinite product decomposition for the sine function. Euler’s principle of cancellation is compared to the Leibnizian transcendental law of homogeneity. The Leibnizian law of continuity similarly finds echoes in Euler. We argue that Ferraro’s assumption that Euler worked with a classical notion of quantity is symptomatic of a post-Weierstrassian placement of Euler in the Archimedean track for the development of analysis, as well as a blurring of the distinction between the dual tracks noted by Bos. Interpreting Euler in an Archimedean conceptual framework obscures important aspects of Euler’s work. Such a framework is profitably replaced by a syntactically more versatile modern infinitesimal framework that provides better proxies for his inferential moves. (shrink)

In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural constraints; and (...) nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

This study has explored the relation between dance achievement and alexithymia in a larger Swedish population sample (Swedish Twin Registry) with a study sample of 5431 individuals. Dance achievement (CAQ) was assessed in relation to Alexithymia (Toronto Alexithymia Scale, TAS-20) including the three subscales: Difficulty Identifying Feelings (DIF), Difficulty Describing Feelings (DDF), and Externally Oriented Thinking (EOT). The results show a significant negative association between the TAS subscale (EOT) and creative achievement in dance. A high EOT score corresponds to poor (...) ability to communicate feelings to the environment. There was no consistent association between the other factors DIF and DDF and dance achievement. Dance activity and training seem to be involved in the body’s emotional interplay with others. Embodied cognition, emotional perception, and action are discussed as factors relevant to measuring the skill of a dancer. (shrink)

Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be (...) self-reflective and to be “author of their lives”. We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people. (shrink)

The under-representation of women on boards is a heavily discussed topic—not only in Germany. Based on critical mass theory and with the help of a hand-collected panel dataset of 151 listed German firms for the years 2000–2005, we explore whether the link between gender diversity and firm performance follows a U-shape. Controlling for reversed causality, we find evidence for gender diversity to at first negatively affect firm performance and—only after a “critical mass” of about 30 % women has been reached—to (...) be associated with higher firm performance than completely male boards. Given our sample firms, the critical mass of 30 % women translates into an absolute number of about three women on the board and hence supports recent studies on a corresponding “magic number” of women in the boardroom. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Liao and Carbonell discuss the role of (supposed) racial differences and racism in two medical devices: pulse oximeters and spirometers. They show that what might seem like cases of mere bias, are...

The extended reliance on media can be seen as one indicator of mediatization. But even though we can assume that the pervasive character of digital media essentially changes the way people experience everyday life, we cannot take these experiences for granted. There has recently been a formulation of three tasks for mediatization research; historicity, specificity and measurability, needed to empirically verify mediatization processes across time and space. In this article, we present a tool designed to handle these tasks, by measuring (...) the extent to which people experience that media reach into the deeper layers of daily human life. The tool was tested in an empirical study conducted in Sweden in 2017. The results show that perceived media reliance is played out in relation to three types of basic desires: (1) (re)productive desires, (2) recognition desires, and (3) civic desires, and is socially structured and structuring. We argue this tool, in diachronic analyses, can measure one important aspect of mediatization. (shrink)

Did Leibniz exploit infinitesimals and infinities à la rigueur or only as shorthand for quantified propositions that refer to ordinary Archimedean magnitudes? Hidé Ishiguro defends the latter position, which she reformulates in terms of Russellian logical fictions. Ishiguro does not explain how to reconcile this interpretation with Leibniz’s repeated assertions that infinitesimals violate the Archimedean property (i.e., Euclid’s Elements, V.4). We present textual evidence from Leibniz, as well as historical evidence from the early decades of the calculus, to undermine Ishiguro’s (...) interpretation. Leibniz frequently writes that his infinitesimals are useful fictions, and we agree, but we show that it is best not to understand them as logical fictions; instead, they are better understood as pure fictions. (shrink)

Exposome research is put forward as a major tool for solving the nature-versus-nurture debate because the exposome is said to represent “the nature of nurture.” Against this influential idea, we argue that the adoption of the nature-versus-nurture debate into the exposome research program is a mistake that needs to be undone to allow for a proper bioethical assessment of exposome research. We first argue that this adoption is originally based on an equivocation between the traditional nature-versus-nurture debate and a debate (...) about disease prediction/etiology. Second, due to this mistake, exposome research is pushed to adopt a limited conception of agential control that is harmful to one's thinking about the good that exposome research can do for human health and wellbeing. To fully excise the nature-versus-nurture debate from exposome research, we argue that exposome researchers and bioethicists need to think about the exposome afresh from the perspective of actionability. We define the concept of actionability and related concepts and show how these can be used to analyze the ethical aspects of the exposome. In particular, we focus on refuting the popular “gun analogy” in exposome research, returning results to study participants and risk-taking in the context of a well-lived life. (shrink)

Submission by 31st July 2021 The relationship between pragmatism and critical realism is open to many interpretations. On the one hand, compared to more traditional approaches, the two approaches s...

It may soon become possible not just to replace, but to re-grow healthy tissues after injury or disease, because of innovations in the field of Regenerative Medicine. One particularly promising innovation is a regenerative valve implant to treat people with heart valve disease. These implants are fabricated from so-called ‘smart’, ‘lifelike’ materials. Implanted inside a heart, these implants stimulate re-growth of a healthy, living heart valve. While the technological development advances, the ethical implications of this new technology are still unclear (...) and a clear conceptual understanding of the notions ‘smart' and ‘lifelike' is currently lacking. In this paper, we explore the conceptual and ethical implications of the development of smart lifelike materials for the design of regenerative implants, by analysing heart valve implants as a showcase. In our conceptual analysis, we show that the materials are considered ‘smart’ because they can communicate with human tissues, and ‘lifelike’ because they are structurally similar to these tissues. This shows that regenerative valve implants become intimately integrated in the living tissues of the human body. As such, they manifest the ontological entanglement of body and technology. In our ethical analysis, we argue this is ethically significant in at least two ways: It exacerbates the irreversibility of the implantation procedure, and it might affect the embodied experience of the implant recipient. With our conceptual and ethical analysis, we aim to contribute to responsible development of smart lifelike materials and regenerative implants. (shrink)

Recently Robert B. Talisse has put forth a socio-epistemic justification of liberal democracy that he believes qualifies as a public justification in that it purportedly can be endorsed by all reasonable individuals. In avoiding narrow restraints on reasonableness, Talisse argues that he has in fact proposed a justification that crosses the boundaries of a wide range of religious, philosophical and moral worldviews and in this way the justification is sufficiently pluralistic to overcome the challenges of reasonable pluralism familiar from Rawls. (...) The fascinating argument that Talisse furthers is that when cognitively functional individuals reflect on some of their most basic epistemic commitments they will come to see that, in virtue of these commitments, they are also committed to endorsing key liberal democratic institutions. We argue that the socio-epistemic justification can be reasonably rejected on its own terms and thus fails as a public justification approach. This point is made by illustrating the significance of deep epistemic disagreements in liberal democracies. (shrink)

This study departs from the built-in tension of the dual goals of forensic psychiatric care in Sweden, which are to protect society as well as to care for patients. The majority of violence that takes place is perpetrated by men. Therefore, the views of nursing staff on violence as a gendered phenomenon have an impact on the care provision. There is a need for further knowledge of how norms of violence are intertwined with the construction of gender. The aim of (...) this study was to use a gender perspective to demonstrate the views of nursing staff on security and care and the consequences for their relationships with patients. The study adopts an ethnographic approach, with data consisting of field notes from participatory observations and interviews with nursing staff at two maximum-security clinics. We show how the perceptions of nursing staff about gender relations are based on heteronormative thinking, which affects their practice. This implies that if gender is ignored in relation to the dual goals, there is a risk of perpetrating patterns of unequal conditions. Therefore, it is vital to make gender visible to counteract unequal conditions for nursing staff and address patients' individual care needs. (shrink)

_Objective:_ The aim of the current study was to investigate associations, unique and interactive, between mothers’ and children’s histories of childhood sexual abuse (CSA) and children’s psychiatric outcomes using an intergenerational perspective. Further, we were particularly interested in examining whether maternal reflective functioning about their own trauma (T-RF) was associated with a lower likelihood of children’s abuse exposure (among children of CSA-exposed mothers). _Methods:_ One hundred and eleven children ( M age = 9.53 years; 43 sexual abuse victims) and their (...) mothers ( M age = 37.99; 63 sexual abuse victims) participated in this study. Mothers completed the Parent Development Interview (PDI), which yielded assessments of RF regarding their own experiences of abuse, and also reported on their children’s internalizing and externalizing symptoms. _Results:_ Children of CSA-exposed mothers were more likely to have experienced CSA. A key result was that among CSA-exposed mothers, higher maternal T-RF regarding their own abuse was associated with lower likelihood of child CSA-exposure. Mothers’ and children’s CSA histories predicted children’s internalizing and externalizing symptoms, such that CSA exposure for mother or child was associated with greater symptomatology in children. _Conclusion:_ The findings show that the presence of either maternal or child CSA is associated with more child psychological difficulties. Importantly in terms of identifying potential protective factors, maternal T-RF is associated with lower likelihood of CSA exposure in children of CSA-exposed mothers. We discuss these findings in the context of the need for treatments focusing on increasing T-RF in mothers and children in the context of abuse to facilitate adaptation and reduce the intergenerational risk. (shrink)

This rich and diverse collection offers a range of perspectives and practices of Philosophy for Children (P4C). P4C has become a significant educational and philosophical movement with growing impact on schools and educational policy. Its community of inquiry pedagogy has been taken up in community, adult, higher, further and informal educational settings around the world. The internationally sourced chapters offer research findings as well as insights into debates provoked by bringing children’s voices into moral and political arenas and to philosophy (...) and the broader educational issues this raises, for example: historical perspectives on the field; democratic participation and epistemic, pedagogical and political relationships; philosophy as a subject and philosophy as a practice; philosophical teaching across the curriculum; embodied enquiry, emotions and space; knowledge, truth and philosophical progress; resources and texts for philosophical inquiry; ethos and values of P4C practice and research. The Routledge International Handbook of Philosophy for Children will spark new discussions and identify emerging questions and themes in this diverse and controversial field. It is an accessible, engaging and provocative read for all students, researchers, academics and educators who have an interest in Philosophy for Children, its educational philosophy and its pedagogy. (shrink)

Despite Vision Zero’s moral appeal and its expansion throughout the world, it has been criticized on different grounds. This chapter is based on an extensive literature search for criticism of Vision Zero, using the bibliographic databases Philosopher’s Index, Web of Science, Science Direct, Scopus, Google Scholar, PubMed, and Phil Papers, and by following the references in the collected documents. Even if the primary emphasis was on Vision Zero in road traffic, our search also included documents criticizing Vision Zero policies in (...) other safety areas, such as public health, the construction and mining industries, and workplaces in general. Based on the findings, we identify and systematically characterize and classify the major arguments that have been put forward against Vision Zero. The most important arguments against Vision Zero can be divided into three major categories: moral arguments, arguments concerning the rationality of Vision Zero, and arguments aimed at the practical implementation of the goals. We also assess the arguments. Of the 13 identified main arguments, 6 were found to be useful for a constructive discussion on safety improvements. (shrink)

Late in 1990, the Center for the Study of Ethics in the Professions at Illinois Institute of Technology (lIT) received a grant of more than $200,000 from the National Science Foundation to try a campus-wide approach to integrating professional ethics into its technical curriculum.! Enough has now been accomplished to draw some tentative conclusions. I am the grant's principal investigator. In this paper, I shall describe what we at lIT did, what we learned, and what others, especially philosophers, can learn (...) from us. We set out to develop an approach that others could profitably adopt. I believe that we succeeded. (shrink)

Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress...

Reading fiction for pleasurable is robustly correlated with improved cognitive attainment and other benefits. It is also in decline among young people in developed nations, in part because of competition from moving image fiction. We review existing research on the differences between reading/hearing verbal fiction and watching moving image fiction, as well as looking more broadly at research on image/text interactions and visual versus verbal processing. We conclude that verbal narrative generates more diverse responses than moving image narrative., We note (...) that reading and viewing narrative are different tasks, with different cognitive loads. Viewing moving image narrative mostly involves visual processing with some working memory engagement, whereas reading narrative involves verbal processing, visual imagery and personal memory (Xu et al 2005). but Attempts to compare the two by creating suggest that existing research is flawed by attempts to create equivalent stimuli and task demands face a number of challenges, and we discuss these difficulties in comparative approaches. We then investigate the possibility of identifying lower level processing mechanisms that might distinguish cognition of the two media, and propose a focus on internal scene construction and on working memory as foci for future research. Although many of the sources we draw on are focussed on English speaking participants in European or North American settings, we also cover material relating to speakers of Dutch, German, Hebrew and Japanese in their respective countries, and studies of a remote Turkish mountain community. (shrink)

Despite widespread and worldwide efforts to eradicate vector-borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision-making about their design and launch. It (...) is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this “community” should be defined and delineated. In this paper, we shed light on this “boundary problem”: the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision-making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies. (shrink)

To explore the extent of embeddability of Leibnizian infinitesimal calculus in first-order logic (FOL) and modern frameworks, we propose to set aside ontological issues and focus on pro- cedural questions. This would enable an account of Leibnizian procedures in a framework limited to FOL with a small number of additional ingredients such as the relation of infinite proximity. If, as we argue here, first order logic is indeed suitable for developing modern proxies for the inferential moves found in Leibnizian infinitesimal (...) calculus, then modern infinitesimal frameworks are more appropriate to interpreting Leibnizian infinitesimal calculus than modern Weierstrassian ones. (shrink)

The introduction of chatGPT illustrates the rapid developments within Conversational Artificial Intelligence (CAI) technologies (Gordijn and Have 2023). Ethical reflection and analysis of CAI are c...

Background: A predictive genetic test for Huntington’s disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families’ experiences. Objectives: The aim of the study was to describe a young couple’s long-term experiences and the consequences of a predictive test for Huntington’s disease. Research design: A descriptive case study design was used with a longitudinal (...) narrative life history approach. Participants and research context: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington’s disease. Ethical considerations: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. Findings: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. Discussion: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families’ everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. Conclusion: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test. (shrink)

BackgroundParkinson’s disease (PD) has been considered to be one of the most promising target diseases for forthcoming cell-based therapy. The aim of this study is to explore the views of individuals with cryopreserved embryos on using human embryonic stem cells for treating PD.MethodsThe study was performed as a qualitative, semi-structured interview study in June–October 2020. Participants were recruited at a private fertility clinic located in one of the larger Swedish cities. The clinic provides both publicly financed and privately financed IVF-treatments. (...) All interviews were performed by telephone and analyzed using thematic content analysis. Five main categories emerged from 27 sub-categories.ResultsIn total, 18 interviews were performed with 22 individuals, as either a couple (n = 16) or separately (n = 6). Participants had different views on what a cryopreserved embryo is. Some participants addressed cryopreserved embryos as ‘a lump of cells’, and some in terms of their ‘unborn child’. Conditions for donation of cryopreserved embryos for cell-based treatment in PD were: not losing control of what is happening to the embryo, that donating must be voluntary and based on informed consent with time for reflection, that reimbursement, equality and transparency.ConclusionsUsing cryopreserved embryos to treat PD is associated with fundamental ethical and practical issues. This study shows that IVF couples with left-over embryos may be supportive but there is a need for future research to assess people’s views on using cryopreserved embryos for cell-based treatment in PD on a more aggregated level. (shrink)

"Der vorliegende Band hebt sich aus der wachsenden Zahl der Publikationen zur Spatantike und namentlich zur spatantiken Philosophie schon durch die Originalitat des behandelten Themas hervor, das eine Forschungsluecke schlieat. Die Beitrage von Wissenschaftlern verschiedener europaischer Nationen, die als Spezialisten fuer die Spatantike gelten konnen, bieten sowohl einzeln als auch in der Zusammenstellung einen echten Forschungsfortschritt." Plekos "a a valuable contribution. The volume also shows, as the product of predominantly young scholars, that the future of scholarship in the area of (...) ancient and Patristic philosophy is in good hands." Vigiliae Chritianae Inhalt: S. Follinger: Philosophische Theorien in Arnobius' apologetischer Argumentation J. Althoff: Zur Epikurrezeption bei Laktanz C. Riedweg: Philosophische Argumentationsstrukturen in Julians Contra Galilaeos D. J. O'Meara: Epicurus Neoplatonicus R. Thiel: Stoische Ethik im neuplatonischen System (Simplikios' Kommentar zu Epiktets Enchiridion) M. Erler: Hellenistische Philosophie im Platonismus der Spatantike M. Bettetini: Ai limiti della materia, tra neoplatonismo e cristianesimo K. Schlapbach: Ciceronisches und Neuplatonisches in den Proomien von Augustin, Contra Academicos 1 und 2 S. Harwardt: Die Gluecksfrage der Stoa in Augustins De beata vita C. Horn: Augustinus ueber Tugend, Moralitat und das hochste Gut T. Fuhrer: Zum wahrnehmungstheoretischen Hintergrund von Augustins Glaubensbegriff C. Oser-Grote: Virtus Romana und Virtus Christiana - ein romischer Wertbegriff bei Prudentius J. Opsomer / C. Steel: Proclus' Doctrine on the Origin of Evil K. Pollmann: Fiktionalitat in der Philosophie des Hellenismus und in der Spatantike U. Eigler: Strukturen und Voraussetzungen zum Erhalt von philosophischem Wissen in der Spatantike Stellenregister. (shrink)

How does science create knowledge? Epistemic cultures, shaped by affinity, necessity, and historical coincidence, determine how we know what we know. In this book, Karin Knorr Cetina compares two of the most important and intriguing epistemic cultures of our day, those in high energy physics and molecular biology. The first ethnographic study to systematically compare two different scientific laboratory cultures, this book sharpens our focus on epistemic cultures as the basis of the knowledge society.

The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...) and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a ‘donation’ or ‘gift’, and tissue providers are referred to as ‘donors’. Because of the performative qualities of language, the effect of using ‘donation’ and ‘donor’ shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology. (shrink)