Simeon Solomon was a Pre-Raphaelite artist who navigated the modernity of VictorianEngland to create works revolving around explicitly Jewish themes; often creating overtly Jewish images, highly unusual among the generally explicitly Christian movement. This article will deal with how Solomon constructed and dealt with his own identity as a Gay, Jewish man in the modern, and heavily Christian environment of mid-nineteenth century Victorian London. Using contemporary approaches to historicism, observation, and spirituality, his works deal with the complexities of his identity (...) as Jewish and homosexual in a manner where neither was shameful, but rather, sources of inspiration. (shrink)

HIV remission clinical researchers are increasingly seeking study participants who are diagnosed and treated during acute HIV infection—the brief period between infection and the point when the body creates detectable HIV antibodies. This earliest stage of infection is often marked by flu-like illness and may be an especially tumultuous period of confusion, guilt, anger, and uncertainty. Such experiences may present added ethical challenges for HIV research recruitment, participation, and retention. The purpose of this paper is to identify potential ethical (...) challenges associated with involving acutely diagnosed people living with HIV in remission research and considerations for how to mitigate them. We identify three domains of potential ethical concern for clinicians, researchers, and ethics committee members to consider: 1) Recruitment and informed consent; (2) Transmission risks and partner protection; and (3) Ancillary and continuing care. We discuss each of these domains with the aim of inspiring further work to advance the ethical conduct of HIV remission research. For example, experiences of confusion and uncertainty regarding illness and diagnosis during acute HIV infection may complicate informed consent procedures in studies that seek to recruit directly after diagnosis. To address this, it may be appropriate to use staged re-consent procedures or comprehension assessment. Responsible conduct of research requires a broad understanding of acute HIV infection that encompasses its biomedical, psychological, social, and behavioral dimensions. We argue that the lived experience of acute HIV infection may introduce ethical concerns that researchers and reviewers should address during study design and ethical approval. (shrink)

Bioethics, Volume 36, Issue 2, Page 162-169, February 2022.

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights ‐ including the treatment of migrant workers and the rights of women ‐ corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we (...) call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with. (shrink)

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)

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues – missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care (...) left undone – suggesting that nurses, in certain contexts, are actively engaged in rationing care – in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care – despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource. (shrink)

In relation to a thesis put forward by Marx Wartofsky, we seek to show that a historiography of mathematics requires an analysis of the ontology of the part of mathematics under scrutiny. Following Ian Hacking, we point out that in the history of mathematics the amount of contingency is larger than is usually thought. As a case study, we analyze the historians’ approach to interpreting James Gregory’s expression ultimate terms in his paper attempting to prove the irrationality of \. Here (...) Gregory referred to the last or ultimate terms of a series. More broadly, we analyze the following questions: which modern framework is more appropriate for interpreting the procedures at work in texts from the early history of infinitesimal analysis? As well as the related question: what is a logical theory that is close to something early modern mathematicians could have used when studying infinite series and quadrature problems? We argue that what has been routinely viewed from the viewpoint of classical analysis as an example of an “unrigorous” practice, in fact finds close procedural proxies in modern infinitesimal theories. We analyze a mix of social and religious reasons that had led to the suppression of both the religious order of Gregory’s teacher degli Angeli, and Gregory’s books at Venice, in the late 1660s. (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 paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...) with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

Several studies show that healthcare professionals need to communicate inter-professionally in order to manage ethical difficulties. A model of clinical ethics support inspired by Habermas’ theory of discourse ethics has been developed by our research group. In this version of CES sessions healthcare professionals meet inter-professionally to communicate and reflect on ethical difficulties in a cooperative manner with the aim of reaching communicative agreement or reflective consensus. In order to understand the course of action during CES, the aim of this (...) study was to describe the communication of value conflicts during a series of inter-professional CES sessions. Ten audio- and video-recorded CES sessions were conducted over eight months and were analyzed by using the video analysis tool Transana and qualitative content analysis. The results showed that during the CES sessions the professionals as a group moved through the following five phases: a value conflict expressed as feelings of frustration, sharing disempowerment and helplessness, the revelation of the value conflict, enhancing realistic expectations, seeing opportunities to change the situation instead of obstacles. In the course of CES, the professionals moved from an individual interpretation of the situation to a common, new understanding and then to a change in approach. An open and permissive communication climate meant that the professionals dared to expose themselves, share their feelings, face their own emotions, and eventually arrive at a mutual shared reality. The value conflict was not only revealed but also resolved. (shrink)

Models of dream analysis either assume a continuum of waking and dreaming or the existence of two dissociated realities. Both approaches rely on different methodology. Whereas continuity models are based on content analysis, discontinuity models use a structural approach. In our study, we applied both methods to test specific hypotheses about continuity or discontinuity. We contrasted dream reports of congenitally deaf-mute and congenitally paraplegic individuals with those of non-handicapped controls. Continuity theory would predict that either the deficit itself or compensatory (...) experiences would surface in the dream narrative. We found that dream form and content of sensorially limited persons was indifferent from those of non-handicapped controls. Surprisingly, perceptual representations, even of modalities not experienced during waking, were quite common in the dream reports of our handicapped subjects. Results are discussed with respect to feedforward mechanisms and protoconsciousness theory of dreaming. (shrink)

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)

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...

Recent global advances in available technology to prevent mother-to-child HIV transmission necessitate a rethinking of contemporary and previous ethical debates on HIV testing as a means to preventing vertical transmission. In this paper, we will provide an ethical analysis of HIV-testing strategies of pregnant women. First, we argue that provider-initiated opt-out HIV testing seems to be the most effective HIV test strategy. The flip-side of an opt-out strategy is that it may end up as involuntary testing in a clinical setting. (...) We analyse this ethical puzzle from a novel perspective, taking into account the moral importance of certain hypothetical preferences of the child, as well as the moral importance of certain actual preferences of the mother. Finally, we balance the conflicting concerns and try to arrive at an ethically sound solution to this dilemma. Our aim is to introduce a novel perspective from which to analyse testing strategies, and to explore the implications and possible benefits of our proposal. The conclusion from our analysis is that policies that recommend provider-initiated opt-out HIV testing of pregnant mothers, with a risk of becoming involuntary testing in a clinical setting, are acceptable. The rationale behind this is that the increased availability of very effective and inexpensive life-saving drugs makes the ethical problems raised by the possible intrusiveness of HIV testing less important than the child's hypothetical preferences to be born healthy. Health care providers, therefore, have a duty to offer both opt-out HIV testing and available PMTCT (preventing mother-to-child transmission) interventions. (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)

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)

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)

Abraham Robinson’s framework for modern infinitesimals was developed half a century ago. It enables a re-evaluation of the procedures of the pioneers of mathematical analysis. Their procedures have been often viewed through the lens of the success of the Weierstrassian foundations. We propose a view without passing through the lens, by means of proxies for such procedures in the modern theory of infinitesimals. The real accomplishments of calculus and analysis had been based primarily on the elaboration of novel techniques for (...) solving problems rather than a quest for ultimate foundations. It may be hopeless to interpret historical foundations in terms of a punctiform continuum, but arguably it is possible to interpret historical techniques and procedures in terms of modern ones. Our proposed formalisations do not mean that Fermat, Gregory, Leibniz, Euler, and Cauchy were pre-Robinsonians, but rather indicate that Robinson’s framework is more helpful in understanding their procedures than a Weierstrassian framework. (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)

_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)

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)

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)

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)

We explored the possibility of a general brightness bias: brighter pictures are evaluated more positively, while darker pictures are evaluated more negatively. In Study 1 we found that positive pictures are brighter than negative pictures in two affective picture databases (the IAPS and the GAPED). Study 2 revealed that because researchers select affective pictures on the extremity of their affective rating without controlling for brightness differences, pictures used in positive conditions of experiments were on average brighter than those used in (...) negative conditions. Going beyond correlational support for our hypothesis, Studies 3 and 4 showed that brighter versions of neutral pictures were evaluated more positively than darker versions of the same picture. Study 5 revealed that people categorised positive words more quickly than negative words after a bright picture prime, and vice versa for negative pictures. Together, these studies provide strong support for the hypotheses that picture brightness influences evaluations. (shrink)

Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

To what extent do the mother's and father's jobs and occupational sex-typing influence the status and sex-typing of their children's occupation at first entry into the labour market? Referring to a database containing 5027 respondents of two merged Dutch surveys held between 1992 and 1995, this study finds that the effect of the mother's occupational status on her daughter's is significant, but smaller than either the effect of father's status on his son's or his daughter's status. The mother's occupational sex-typing (...) is related to her daughter's occupational sex-typing. The more female sex-typed the daughter's occupation, the lower her occupational status. In the same way, the father's occupational sex-typing is related to his son's occupational sex-typing. While the extension of the classical status attainment models by the mother's occupation and occupational sex-typing leads to interesting and new coefficients, the authors conclude that the more elementary classical model is not invalidated by these new perspectives. (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)

The aim of this article is to present re-enactment interviewing and to propose that it can be used to reveal tacit caring knowledge. This approach generates knowledge not readily attainable by other research methods, which we demonstrate by analysing the epistemological and methodological underpinnings of re-enactment interviewing. We also give examples from a study where re-enactment was used. As tacit knowledge is often characteristic of care, re-enactment interviewing has the potential to engage the informant in a holistic mode and thereby (...) reveal wisdom of the body. When the care provider recalls an event, the details are articulated, which contributes to in-depth data, which subsequently serves as a basis for trustworthy analysis. (shrink)

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely (...) connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation. (shrink)

Abstract[I] want to single out one phenomenon that could be called the ‘politics of sources’. It points to the extent to which the histories that both scientists and historians can write are artifacts of the available sources. The Rockefeller Foundation not only opened its archives very early on for historical work but also invested a lot in making the archives readily available for historical exploration. During the 1980s, many young historians took advantage of this opportunity. Thus, in a relatively early (...) phase of the professional historiography of molecular biology, one could have gained the impression that the development of the new biology as a whole was a bio‐politically directed enterprise of the Rockefeller Foundation sustained by the vision that social processes could ultimately be controlled by biological processes. (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)