With a specific example from Norway and inspiration from Sara Ahmed’s The Promise of Happiness, this article demonstrates how today’s educational rhetoric lacks the language and will to recognise a key pedagogical dimension in education: what happens when the normative ambitions of education and students meet. At best, teaching students life skills to mitigate their mental health issues is naive. Inspired by Ahmed, such an initiative might actually work against its purpose. At a time when educational outcomes are emphasised in (...) local and international political contexts, I argue that the task of philosophy of education should be 1) to reclaim the significance of the pedagogical dimension in education and 2) to philosophise on what negative emotions such as unhappiness require of education. (shrink)

Many healthy volunteers choose to take part in Alzheimer’s disease prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this (...) paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants’ autonomy. Over the next few years, many research groups will be confronted with participants’ preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information. (shrink)

Throughout the longstanding debate on privacy, the concept has been framed in various ways. Most often it has been discussed as an area within which individuals rightfully may expect to be left alone and in terms of certain data that they should be entitled to control. The sphere in which individuals should be granted freedom from intrusion has typically been equated with the indisputably private domestic sphere. Privacy claims in the semi-public area of work have not been sufficiently investigated. In (...) this article, the case is made that employees have reasonable expectations on privacy at work. Firstly, in a descriptive analysis, employees’ need for workspace privacy is spelt out. Secondly, a normative analysis explicates the reasons why privacy should be protected. The main thrust is to provide a more inclusive privacy concept and hence, a more adequate basis for privacy protection legislation and codes in the area of work. Contrary to prevailing workplace privacy protection, employees’ need for local privacy should be accommodated as well as informational privacy. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics. (shrink)

Parents of toddlers can find themselves overwhelmed and struggling with self-doubt when their child is willful, or is having trouble navigating difficult emotions and circumstances. Mindfulness can help! In The Little Frog Awakes, Eline Snel offers parents of children -ages 18 months--4 years--advice and tools for responding mindfully and effectively in the moment. These skills help us regain trust in ourselves and in the integral wholeness of our kids. And when we make mindfulness practice a part of daily life, it (...) gives our children a powerful message on how to recognize, name, and deal with emotions and situations. This practical guide will help you to connect with and respond mindfully to your own feelings as they arise; cultivate compassion for yourself as a parent; show you how to encourage serenity, self-confidence, and emotional regulation in your children; strengthen the bond with your kids and help all of you manage stress; be more fully present with your children, and more able to give them your undivided attention; embrace imperfection and focus on the things that really matter; and more The book and the accompanying audio include activities, practices, and stories for both you and for your toddler that cultivate mindful moments and action, and self-compassion. (shrink)

The aim of this article is to investigate the concept of care in contemporary medical practice and medical ethics. Although care has been hailed throughout the centuries as a crucial ideal in medical practice and as an honourable virtue to be observed in codes of medical ethics, I argue that contemporary medicine and medical ethics suffer from the lack of a theoretically sustainable concept of care and then discuss possible reasons that may help to explain this absence. I draw on (...) the empirical studies of Carol Gilligan on care and connectedness as ontologically situated realities in human life. Based on a philosophical elaboration of her findings on the ethics of care emphasizing relationality, I try to show how the notion of ‘relational ontology’ originating from this stream of thought may be of help in developing a medical ethics that acknowledges care as a perspective to be observed in all interactions between physicians and patients. (shrink)

Background: Young next of kin to patients with mental health problems are faced with many challenges. It is important to focus on the special needs of children and adolescents as next of kin to ensure their welfare and prevent harm. Research questions: We aimed to investigate young next of kin’s need for information and involvement, to examine the ways they cope with situations involving coercion related to the treatment of their relative, and to identify ethical challenges. Research design: We conducted (...) a qualitative study based on semi-structured, individual interviews. Participants and research context: Seven young next of kin aged 14–22 years participated in the study. The informants were recruited from a regional hospital trust in Norway. Ethical considerations: The study was approved by the National Data Protection Official for Research and based upon informed consent and confidentiality. Findings: The adolescents wanted more information and described a need for increased interaction with their sick relative at the hospital. They struggled to keep their relationship with their relative intact, and they described communication problems in the family. Coercive treatment was perceived in a negative way. Discussion: The study finds that there are ethical challenges at stake for young next of kin and their families other than those that are often emphasized by traditional healthcare, which often focuses on the individual patient’s rights. These challenges are related to the young next of kin’s needs for interconnectedness and for the preservation of relationships as well as challenges related to family communication and the need for information. Conclusion: The study finds a need for more family-oriented perspectives in both mental healthcare practices and healthcare ethics. (shrink)

Treating physicians have key roles to play in expanded access to investigational drugs, by identifying investigational treatment options, assessing the balance of risks and potential benefits, informing their patients, and applying to the regulatory authorities. This study is the first to explore physicians’ experiences and moral views, with the aim of understanding the conditions under which doctors decide to pursue expanded access for their patients and the obstacles and facilitators they encounter in the Netherlands. In this mixed-methods study, semi-structured interviews (...) and a questionnaire were conducted with medical specialists across the country and analysed thematically. Typically, our respondents pursue expanded access in “back against the wall” situations and broadly support its classic requirements. They indicate practical hurdles related to reimbursement, the amount of time and effort required for the application, and unfamiliarity with the regulatory process. Some physicians are morally opposed to expanded access, with an appeal to safety risks, lack of evidence, and “false hope.” Some of these moral concerns and practical obstacles may be essential targets for change, if expanded access to unapproved drugs is to become available for wider groups of patients for whom standard treatment options are not—or no longer—available, on a more consistent and equal basis. (shrink)

To avoid post-neurosurgical language deficits, intraoperative mapping of the language function in the brain can be complemented with preoperative mapping with functional magnetic resonance imaging. The validity of an fMRI “language localizer” paradigm crucially depends on the choice of an optimal language task and baseline condition. This study presents a new fMRI “language localizer” in Russian using overt sentence completion, a task that comprehensively engages the language function by involving both production and comprehension at the word and sentence level. The (...) paradigm was validated in 18 neurologically healthy volunteers who participated in two scanning sessions, for estimating test–retest reliability. For the first time, two baseline conditions for the sentence completion task were compared. At the group level, the paradigm significantly activated both anterior and posterior language-related regions. Individual-level analysis showed that activation was elicited most consistently in the inferior frontal regions, followed by posterior temporal regions and the angular gyrus. Test–retest reliability of activation location, as measured by Dice coefficients, was moderate and thus comparable to previous studies. Test–retest reliability was higher in the frontal than temporo-parietal region and with the most liberal statistical thresholding compared to two more conservative thresholding methods. Lateralization indices were expectedly left-hemispheric, with greater lateralization in the frontal than temporo-parietal region, and showed moderate test-retest reliability. Finally, the pseudoword baseline elicited more extensive and more reliable activation, although the syllable baseline appears more feasible for future clinical use. Overall, the study demonstrated the validity and reliability of the sentence completion task for mapping the language function in the brain. The paradigm needs further validation in a clinical sample of neurosurgical patients. Additionally, the study contributes to general evidence on test–retest reliability of fMRI. (shrink)

The care for older and disabled people has been described as a core area of the Nordic model. The Nordic countries’ welfare model has also been described as women friendly, as women are not forced to make harder choices than men between work and family. The Swedish eldercare system has, during the last several decades, undergone significant changes. Previously, eldercare could be described as universal, meaning a publicly provided, comprehensive, high-quality service available to all citizens according to need and not (...) based on the ability to pay. In later years transformation of eldercare has been influenced by neoliberal politics, which emphasize economic efficiency and cost reduction through competition. Eldercare has become a more diverse multidimensional system, and a private market for home-based eldercare has been created. The numbers of eldercare providers have increased considerably, and new ways of organizing eldercare have been established. In January 2009, the Act on System of Choice in the Public Sector was introduced. The Act was supposed to provide an opportunity for interested municipalities and county councils to expose their publicly provided services to market competition, and to enable users to choose their providers. This article aims to illustrate how neoliberal reasoning dominated the policy process leading to adoption of the Act on System of Choice in the Public Sector. With the use of a discursive policy analysis the authors specifically explore how neoliberal logic dominated, and also how choice and equality were understood and interpreted in the policy process. They conclude that the neoliberal turn in eldercare claiming to centre on the individual choice of persons in need of care runs the risk of creating unequal care that decentres the eldercare worker and creates precarious work situations. (shrink)

Background: In recent years, operating theatre nurse students’ education focused on ethics, basic values and protecting and promoting the patients' dignity in perioperative practice. Health professionals are frequently confronted with ethical issues that can impact on patient’s care during surgery. Objective: The objective of this study was to present what operating theatre nursing students perceived and interpreted as undignified caring in perioperative practice. Research design: The study has a descriptive design with a hermeneutic approach. Data were collected using Flanagan’s critical (...) incident technique. Participants and research context: Operating theatre nurse students from Sweden and Norway participated and collected data in 2011, after education in ethics and dignity. Data consisting of 47 written stories and the text were analysed with hermeneutical text interpretation. Ethical considerations: The study was approved by the Karlstad University's Research Ethics Committee. Findings: The findings show careless behaviour and humiliating actions among health professionals. Health professionals commit careless acts by rendering the patient invisible, ignoring the patient’s worry and pain and treating the patient as an object. They also humiliate the patient when speaking in negative terms about the patient’s body, and certain health professionals blame the patients for the situation they are in. Health professionals lack the willingness and courage to protect the patient’s dignity in perioperative practice. Discussion: In the discussion, we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act. Conclusion: The findings reveal that patients were exposed to unnecessary suffering; furthermore, the operating theatre nurse students suffered an inner ethical conflict due to the undignified caring situations they had witnessed. (shrink)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and (...) informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

During the COVID-19 pandemic, investigational treatments have been made available to seriously ill patients through so-called expanded access programmes, such as compassionate use and named-patient programmes. Many countries have legal, ethical and professional frameworks in place to promote safe and responsible use of investigational treatments outside of clinical trial settings. However, these frameworks leave room for ambiguities regarding the roles and responsibilities of treating physicians, hospital-based pharmacists, pharmaceutical companies, and other stakeholders, and for practices to differ, not only between countries, (...) but also within countries, between hospitals and individual healthcare providers. Current ambiguities with regard to physicians’ moral duties, for instance, allow physicians to withhold information from patients about options for expanded access, and to forego pursuing such options for their patients. This chapter describes the experiences with the use of Remdesivir and hydroxychloroquine in COVID-19-infected patients in the Netherlands during the first wave of the pandemic, and discusses an open question in relation to treating physicians’ duties, namely vis-à-vis information provision. This chapter proposes a prima facie obligation for healthcare professionals to inform eligible patients about relevant options for expanded access. (shrink)

This study examined psychopathological correlates of implicit and explicit shame and guilt in 30 clinical and 129 non-clinical youths aged 8–17 years. Shame and guilt were measured explicitly via two self-reports and a parent report, and implicitly by means of an Implicit Association Test (IAT), while a wide range of psychopathological symptoms were assessed with questionnaires completed by children, parents, and teachers. The results showed no differences of implicit and explicit shame and guilt between the clinical and non-clinical group, implying (...) that dysregulation of these self-conscious emotions is not per definition associated with psychopathology. Correlational analyses indicated that self-reported explicit shame was positively associated with a broad range of internalizing psychopathology, while self-reported explicit guilt was associated with higher levels of anxiety and to some extent lower levels of externalizing psychopathology. Correlations with parent-rated shame and guilt revealed the same pattern of results but were in general weaker. Furthermore, implicit shame and guilt did not show significant correlations with the various measures of psychopathology. It can be concluded that the link between shame and guilt and psychopathology is complex, and partly dependent on the disorder under study and context-related factors defining the maladaptive nature of these self-conscious emotions. (shrink)

Swedish beef and dairy farmers are currently facing a challenging financial situation. Simultaneously, beef farming contributes significant environmental impacts. To support farmers, actors from the whole value chain are now promoting Swedish beef as particularly ‘sustainable’. The paper draws on critical discourse analysis of interviews with and documents from the largest Swedish supermarket chain ICA, Swedish farmer organisations and farmers to study how ICA and farmers articulate sustainability and their responsibility for the same. Articulations are subsequently discussed in the light (...) of actual environmental impacts of beef production and the distribution of power in the beef value chain. The findings suggest that negative environmental impacts and farmers’ struggles are largely hidden in the dominant articulation of sustainability. Furthermore, ICA does not use the power it has to steer consumers toward reduced beef consumption. We conclude with suggesting more open deliberation about current levels of beef sales and consumption and about what compromises to make when striving for ‘sustainable’ beef consumption. (shrink)

Simple mindfulness practices to help your child (ages 5-12) deal with anxiety, improve concentration, and handle difficult emotions—with a 60-minute audio CD of guided exercises Mindfulness—the quality of attention that combines full awareness with acceptance of each moment, just as it is—is gaining broad acceptance among mental health professionals as an adjunct to treatment. This little book is a very appealing introduction to mindfulness meditation for children and their parents. In a simple and accessible way, it describes what mindfulness is (...) and how mindfulness-based practices can help children calm down, become more focused, fall asleep more easily, alleviate worry, manage anger, and generally become more patient and aware. The book contains eleven practices that focus on just these scenarios, along with short examples and anecdotes throughout. Included with purchase is an audio CD with guided meditations, voiced by Myla Kabat-Zinn, who along with her husband, Jon Kabat-Zinn, popularized mindfulness-based stress reduction (MBSR) as a therapeutic approach. Continue your mindfulness practice with Eline Snel through her other mindfulness meditation titles, including Sitting Still Like a Frog Activity Book, which offers 75 fun mindfulness games and activities for children, and The Little Frog Awakes, which offers tools and advice for mindfully responding to younger children ages 18 months to 4 years. (shrink)

This paper examines the support for diversity from a moral perspective. Combining business ethics theory with a lens of critical discourse analysis, it reconstructs the debates on the ethicality of three disability inclusion practices—positive discrimination, job adaptations, and voluntary disclosure—drawn from multi-stakeholder interviews in disability-friendly organizations. Discursive resistance to disability inclusion practices, otherwise known to work, arises out of moral beliefs characteristic of an ethic of justice, whereas support is more often informed by an ethic of care. This study contributes (...) to the literature by laying bare how ethics fuel ‘resistance to’ rather than ‘support for’ diversity and inclusion. Like prior studies, it links such resistance to the myth of individual merit, noting that some re-appropriation of an ethic of justice becomes possible when legal awareness around issues of disability is raised in the context of work. In addition, it identifies an ethic of care as holding the greatest potential for fostering workplace inclusion yet cautions for two adverse side effects that may arise when promoting corporate care: the potential of paternalism and the inclination to individualise inherent to wellbeing initiatives. (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake rates are not intrinsically desirable (...) or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...) incidental findings in imaging research. We conducted an interview study with a purposive sample of researchers at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium. Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity. (shrink)

Based on conversation analysis, this study investigates central practices in what is defined as a caring interview, in the context of welfare administration. Caring refers to a helpful interviewing in reformulations of questions, taking interviewees’ difficulties to answer into consideration; a caring attitude in the framing of questions, showing understanding of clients’ circumstances and professional’s enactment of expertise in assessments of clients’ disabilities and care needs. Data include a corpus of 43 recorded interviews in which officials at the Swedish Social (...) Insurance Agency interview clients who have applied for benefits. The study adds to research on interactional sensitivity, polar questions and epistemic stance in institutional interaction. The study shows how the interviewer prioritizes confirming polar questions, takes responsibilities of knowing into account and reduces the epistemic gap to the interviewee in practices of a caring interview. This makes the interviewing markedly different from standardized and bureaucratic interviewing. (shrink)

If our moral beliefs rest on a mistake, as moral error theorists claim, what should we do with them? According to Richard Joyce’s revolutionary moral fictionalism, error theorists should pretend to believe moral propositions in order to keep the benefits moral thinking has for their preference satisfaction. This, he claims, frees error theory from radical practical implications. In response, I argue that implementing fictionalism would not preserve our moral practices, but disrupt them. The change from moral belief to make-belief yields (...) an unintended second revolution: a revolution in the content of morality. I show that fictionalism necessarily relies on a similar justification of moral practices as David Gauthier’s contractarianism, and consequently has similar implications for moral content. Because fictionalists engage in moral thinking purely for its instrumental value, they should only accept moral obligations that are useful to them into their fiction. This restriction is important: the most useful moral fiction departs substantially from conventional moral views. Revolutionary moral fictionalism is therefore more radical than it is promised to be. (shrink)

In the last two decades, stem cell-based brain organoids have been developed to study disease mechanisms in various neurological, psychiatric, and developmental disorders. Simultaneously, there hav...

Västvärldens åldrande befolkning anses ofta ställa krav på nya former av vård och omsorg. Olika typer av informations- och kommunikationstekniskt baserat vårdstöd framhålls ofta som en lösning. Tekniken medger en rad olika fördelar, exempelvis tätare tillsyn, kontinuerliga mätningar av vitala funktioner, med möjlighet att kontinuerligt ställa diagnos, och snabb respons på larm, men de tekniska lösningarna får också etiska implikationer. I den här artikeln beskrivs och exemplifieras IKT-baserad vård och omsorg och teknikens påverkan på centrala värden som personlig integritet, autonomi, (...) frivillighet och informerat samtycke diskuteras. Interaktiv etisk teknikvärdering föreslås för att bättre inkorporera alla berörda parters behov av och synpunkter på den här typen av vårdstöd.Nyckelord: autonomi, etik, frivillighet, informerat samtycke, interaktiv etisk teknikvärdering, IKT-baserat vårdstöd, hemvård, personlig integritet, robotteknik, sensorteknik, säkerhet, trygghet, valfrihetEnglish summary: When health care moves in – the ethics of mobile health careAn ageing population in the Western world is typically taken to require novel forms of health care. Different types of Information and Communication based services and functions are presented as a solution. Even if such technology imply benefits in terms of more frequent attendance, continuous monitoring and diagnoses of vital signs and quick response to alarms, the technology also gives raise to ethical concerns. This article describes and exemplifies ICT-based health care and discusses implications on central values like privacy, autonomy, freedom of choice and informed consent. Interactive ethical technology assessment is suggested as a means to better incorporate the needs of all concerned parties and their perspectives on this type of support. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the predominant (...) discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so‐called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set‐up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set‐up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct‐to‐consumer applications of the new genetics. (shrink)

Background: According to Norwegian law, nurses are obligated to provide an acceptable level of health assistance to patients and their family members and to allow patients and their family members to participate in the planning of patient care and treatment. Aim: The aim of this study is to compare the perceptions of older patients undergoing haemodialysis treatment and of their next of kin and of nurses regarding patient participation in the context of haemodialysis treatment. Research design: The study adopts an (...) approach that is both comparative and explorative in nature by examining the narratives of patients, nurses and next of kin and by performing critical discourse analysis as outlined by Fairclough. Ethical considerations: Permission to carry out the research was granted by the Regional Committee for Medical and Health Research Ethics of Mid-Norway and by the participating hospitals. Informed consent and confidentiality were ensured. Findings: Two discourses were found: (a) the discourse of paternalism with the discursive practices of achieving physiological balance in patients, trusting the healthcare team and being excluded or included in the difficult end-of-life decision-making process, and (b) the discourse of patient participation, with the themes of maintaining patients’ quality of life and trusting patients. Conclusion: The participation of older patients and their next of kin was not as well integrated as social practice in dialysis units. The dominant discourse seemed to have an ideology and social practice of paternalism. However, there existed hegemonic struggles for an ideology of patient participation that involved (a) achieving physiological balance in patients versus maintaining patients’ quality of life, (b) trusting the healthcare team versus trusting the patient, and (c) being excluded versus included in the difficult end-of-life decision-making process. (shrink)

In Richard Rorty: Outgrowing Modern Nihilism, Tracy Llanera places Richard Rorty in conversation with philosophers confronting nihilism as a “malaise of modernity.” She shows how Rortyan thought offers a horizontal and relational approach to “redemption,” as opposed to religious or philosophical paths to be saved by higher beings or ideas. This essay focuses on Llanera's redescription of Rorty and whether amplifying Rorty's use of “redemption” and “transcendence” is wise. Leaving behind this laden vocabulary might better serve Llanera's purpose of illuminating (...) a path to outgrow, rather than overcome, the anxiety of nihilism. After exploring Llanera's redescription of Rorty, the essay suggests that a different vocabulary—composed of words such as ease, hope, and comfort, and potentially as capable of supporting Llanera's overarching aim—is available in Rorty's writings. Turning to this other vocabulary might strengthen Llanera's significant contribution to the nihilism debate and to Rortyan and pragmatist philosophy more generally. (shrink)

This short essay argues that more attention should be paid to conventional norms in metaethics and metanormative theory.

Background Coercion can cause harm to both the patient and the patient’s family. Few studies have examined how the coercive treatment of a close relative might affect young next-of-kin. Research questions We aimed to investigate the views and experiences of health professionals being responsible for supporting young next-of-kin to patients in mental health care (children-responsible staff) in relation to the needs of these young next-of-kin in coercive situations and to identify ethical challenges. Research design We conducted a qualitative study based (...) on semistructured, focus group interviews and an individual interview. Participants and research context We held three focus group interviews with six to seven children-responsible staff in each group (a total of 20 participants) and one individual interview with a family therapist. The participants were recruited from three hospital trusts in the eastern part of Norway. Ethical considerations The study was approved by the National Data Protection Official for Research and based on informed consent and confidentiality. Findings Coercion was not a theme among the participants in relation to their work with young next-of-kin, and there was much uncertainty related to whether these young people need special support to deal with the coercive treatment of their close relative. Despite the uncertainty, the study indicated a need for more information and emotional support among the youth. Discussion Few studies have addressed the potential impact of coercive treatment of a close family member on young next-of-kin. The findings were consistent with existing research but highlighted disagreement and uncertainty among the children-responsible staff about to what extent the young next-of-kin should visit and whether they should enter the ward unit or not. We identified ethical challenges for the children-responsible staff related to the principle of not inflicting harm ( nonmaleficence). Conclusion From the perspective of children-responsible staff, it appears that the coercive treatment of a close family member entails a need for extra support of young relatives both in relation to information and the facilitation of visits, but more systematic knowledge about these issues is needed. (shrink)

This article explores how paid domestic work is framed in state policies and discourses, drawing upon theoretical discussions on gender, welfare and global care chains. Based on a case study of the political debate on the `reconciliation of personal, family and work life' in Spain, the author argues that dominant policy frames relate gender inequality to women's unpaid domestic work and care, while domestic workers are essentially the invisible `other'. Empowering and disempowering frames are discussed; domestic workers are mainly constructed (...) as a solution to the care problem and only marginally as subjects and rights-holders. The overall aim is to examine how public policies legitimize and produce social inequalities related to gender, class and nationality. (shrink)