Cet article analyse les représentations de soi dans une campagne menée sur les réseaux sociaux contre la discrimination des personnes handicapées. Nous nous intéressons plus particulièrement à la manière dont ces représentations sont liées à divers récits et discours, et à la manière dont elles adhèrent ou défient les discours normatifs, ou encore offrent des contre-discours. Étant donné que nos représentations culturelles sont influencées par les représentations auxquelles nous sommes exposés, nous discutons également les représentations potentielles de soi que cette (...) campagne propose à son public. Notre matériel empirique est constitué d’une campagne d’activisme numérique menée sur Instagram en Suède en 2016 et construite à partie d’un ensemble de représentations de soi (photos et textes courts). La recherche combine analyse du discours et analyse visuelle en mettant l’accent sur la manière dont les personnes se présentent, dont le handicap est mentionné et/ou présenté, et dont une présentation adhère à, ou conteste, un modèle de compréhension du handicap, tel que le modèle médical ou le modèle social. Globalement, nous trouvons un ensemble diversifié de revendications, toutes ayant pour objectif commun de reconnaître et de rendre visible la discrimination, et d’apporter des changements. Les récits identifiés montrent la variété de stratégies adoptées pour comprendre le handicap et les diverses manières dont les gens se rapportent aux discours établis sur le handicap. Grâce à cette campagne, les blogueurs ont pu trouver et apporter un soutien, mais ils ont également pris la parole en demandant au public d’écouter. La campagne examinée dans cette recherche peut en outre être perçue comme un effort et un pas en avant vers une visibilité et une politisation accrue du handicap. (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)

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)

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

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)

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 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)

Every day situations arising in health care contain ethical issues influencing care providers' conscience. How and to what extent conscience is influenced may differ according to how conscience is perceived. This study aimed to explore the relationship between perceptions of conscience and stress of conscience among care providers working in municipal housing for elderly people. A total of 166 care providers were approached, of which 146 (50 registered nurses and 96 nurses' aides/enrolled nurses) completed a questionnaire containing the Perceptions of (...) Conscience Questionnaire and the Stress of Conscience Questionnaire. A multivariate canonical correlation analysis was conducted. The first two functions emerging from the analysis themselves explained a noteworthy amount of the shared variance (25.6% and 17.8%). These two dimensions of the relationship were interpreted either as having to deaden one's conscience relating to external demands in order to be able to collaborate with coworkers, or as having to deaden one's conscience relating to internal demands in order to uphold one's identity as a `good' health care professional. (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...

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)

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)

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)

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)

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)

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)

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)

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)

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)

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.

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)

In this article we present a new experimental paradigm: comparative visual search. Each half of a display contains simple geometrical objects of three different colors and forms. The two display halves are identical except for one object mismatched in either color or form. The subject's task is to find this mismatch. We illustrate the potential of this paradigm for investigating the underlying complex processes of perception and cognition by means of an eye‐tracking study. Three possible search strategies are outlined, discussed, (...) and reexamined on the basis of experimental results. Each strategy is characterized by the way it partitions the field of objects into “chunks.” These strategies are: (i) Stimulus‐wise scanning with minimization of total scan path length (a “traveling salesman” strategy), (ii) scanning of the objects in fixed‐size areas (a “searchlight” strategy), and (iii) scanning of object sets based on variably sized clusters defined by object density and heterogeneity (a “clustering” strategy). To elucidate the processes underlying comparative visual search, we introduce besides object density a new entropy‐based measure for object heterogeneity. The effects of local density and entropy on several basic and derived eye‐movement variables clearly rule out the traveling salesman strategy, but are most compatible with the clustering strategy. (shrink)

This study investigates how Human Factors is applied when designing and developing Immersive Visual Technologies, including Augmented Reality, Mixed Reality, and Virtual Reality. We interviewed fourteen people working at different organizations, that develop IVT applications in the Nordic region. We used thematic analysis to derive themes from the interviews. The results showed an insufficient knowledge and application of HF in IVT development, due to the lack of awareness of both scope and significance of HF, resource allocation strategy, market inertia, stakeholder's (...) involvement, standardization of HF application and IVT uses, and technology maturity. This situation could be improved by allocating experts, adjusting organizational strategy to balance resource allocation, training developers and user organizations to raise awareness and to encourage co-creative design and knowledge sharing, create a sense of ownership amongst stakeholders, and ensure the usefulness of the technology to the user's work. (shrink)

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)

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)

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)

In order to responsibly protect certain cherished values, for instance, human or environmental health, privacy, or ‘human dignity’, societies see a need for oversight, guidance and regulation of de...

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...

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 evaluation of study habits as determinant factors in academic performance is a concern for educational agents because they determine the academic opportunities of students. However, a problem encountered is the accessibility of valid and reliable instruments to evaluate study habits from the students' point of view. In this sense, this paper analyzes the internal structure, reliability, and rating of the study habits perception questionnaire. The results and the practical contribution to the educational community in guiding intervention to improve students' (...) academic opportunities are discussed. (shrink)

Using placebos in day-to-day practice is an ethical problem. This paper summarises the available epidemiological evidence to support this difficult decision. Based on these data we propose to differentiate between placebo and “knowledge framing”. While the use of placebo should be confined to experimental settings in clinical trials, knowledge framing — which is only conceptually different from placebo — is a desired, expected and necessary component of any doctor-patient encounter. Examples from daily practice demonstrate both, the need to investigate the (...) effects of knowledge framing and its impact on ethical, medical, economical and legal decisions. (shrink)

The typical function of goals is to regulate action in a way that furthers goal achievement. Goals are typically set on the assumption that they will help bring the agent closer to the desired state of affairs. However, sometimes endorsement of a goal, or the processes by which the goal is set, can obstruct its achievement. When this happens, the goal is self-defeating. Self-defeating goals are common in both private and social decision-making but have not received much attention by decision (...) theorists. In this paper, we investigate different variants of three major types of self-defeating mechanisms: The goal can be an obstacle to its own fulfilment, goal-setting activities can impede goal achievement, and disclosure of the goal can interfere with its attainment. Different strategies against self-defeasance are tentatively explored, and their efficiency against different types of self-defeasance is investigated. (shrink)

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)

Following the evolution towards media-saturated societies, this article presents practice theory as an alternative framework for mediatization studies. We discuss how it can help us grasp the diversity of social and cultural changes related to the highly integrated media. This is demonstrated by studying politicians' personalization, not as a product of media logic but by looking at politicians' media-related practices and media's anchoring of practices. Our in-depth interviews with Flemish politicians show that their practices are in many ways organized by (...) the media, but through this mediatization at the same time aim to retain control over them. It is also shown that politicians' practices are not only directly influenced by media, but also by other politicians' media-related practices. Together, these findings draw a complex picture of the mediatization and personalization process. (shrink)