When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts when it becomes (...) part of a socio-technical network in an Intensive Care Unit. Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on the way patient outcomes are constructed, the kind of decision support these outcomes provide, and how cEEG affects communication between professionals and relatives. We argue that cEEG can take away or decrease the intensity of the dilemma in some cases, while increasing uncertainty for others. It also raises new concerns. Since its actual impacts furthermore hinge on how cEEG is designed and implemented, we end with recommendations for ensuring responsible development and implementation. (shrink)

Aim: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. Methods: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2-tests for (...) dierences between countries. Results: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17–44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). Conclusions: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests. (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)

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...

In this paper I introduce a theoretical framework on care developed by the Norwegian nurse and philosopher Kari Martinsen, and I argue that this approach has relevance not only within nursing, but also within clinical medicine. I try to substantiate this claim by analysing some of the key concepts in this approach, and I illustrate the potential clinical relevance of this approach by applying it in relation to two care scenarios. Finally, I discuss some of the concerns that have been (...) raised in relation to the aim of highlighting care in medicine. (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 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)

This chapter considers the semantics and pragmatics of expressive content. It begins by exemplifying the class of expressives, in the process introducing the tests that have been proposed for expressivity, focusing on the expressive adjectives fucking and damn, and on pejorative terms. The chapter then turns to specific analyses of these and other expressive items, also discussing facts related to how the particular content of some expressives can be derived from context. The chapter concludes with a discussion and overview of (...) various approaches to semantic composition with expressives. (shrink)

Cognitive models of depression posit that persistent negative self-referent thinking (PNSRT) is an important vulnerability factor for depressive symptoms. The mechanisms involved are still understudied, especially in adolescence. PNSRT has been assessed by a behavioural decision-making task, namely the emotional reversal learning task (ERLT). Within the ERLT, PNSRT is operationalised as the learning rate for negative self-reference. The first aim of the current study is to examine the association between PNSRT and depressive symptoms at baseline and follow-up. Second, the current (...) study investigated associations of PNSRT with temperamental and emotion regulation variables. We found no significant effect between PNSRT and baseline depressive symptoms, although the small effect size pointed in the expected direction. No significant prospective effect was found. Additionally, adolescents with greater capacity for response inhibition and better attentional control exhibited less PNSRT. No other significant associations were found with other temperamental dimensions or emotion regulation variables. In conclusion, while the small effect size of the cross-sectional association between PNSRT and depressive symptoms points in the expected direction, no significant evidence was found that PNSRT acts as either a concomitant or precursor to depressive symptomatology. However, the current study did find a relation between low effortful control and PNSRT. (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)

Background Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patient programs. The views and experiences of patients with unmet medical needs regarding unapproved, investigational drugs have not yet been examined empirically. Methods In this qualitative study, exploratory interviews and focus groups were held with patients with chronic or life-threatening diseases, about topics related to non-standard treatment options, such as the search for (...) non-standard treatment options, patients’ views of the moral obligations of doctors, and the conditions under which they would or would not wish to use non-standard treatment options, including expanded access to unapproved, investigational drugs. Results Respondents had very little knowledge about and/or experience with existing opportunities for expanded access to investigational drugs, although some respondents were actively looking for non-standard treatment options. They had high expectations of their treating physicians, assuming them to be aware of non-standard treatment options, including clinical trials elsewhere and expanded access programs, and assuming that they would inform their patients about such options. Respondents carefully weighed the risks and potential benefits of pursuing expanded access, citing concerns related to the scientific evidence of the safety and efficacy of the drug, side effects, drug-drug interactions, and the maintaining of good quality of life. Respondents stressed the importance of education and assertiveness to obtain access to good-quality health care, and were willing to pay out of pocket for investigational drugs. Patients expressed concerns about equal access to new and/or non-standard treatment options. Conclusion When the end of a standard treatment trajectory comes into view, patients may prefer that treating physicians discuss non-standard treatment options with them, including opportunities for expanded access to unapproved, investigational drugs. Although our respondents had varying levels of understanding of expanded access programs, they seemed capable of making well-considered choices with regard to non-standard treatment options and had realistic expectations with regard to the safety and efficacy of such options. Dutch patients might be less likely to fall prey to false hope than often presumed. (shrink)

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...

This article attempts to explain why Uruguayan judges have lagged behind judges in Chile and Argentina in the prosecution of the military for human rights violations committed during the dictatorship period in the 1970s and 1980s. By tracing judicial human rights activity in Uruguay from the transition to democratic rule in 1985 until the end of 2002, I argue that Uruguayan judges have been actively restricted by an aggressive anti-human rights policy expressed through a national amnesty law and explicit executive (...) interference in judicial matters. Structural changes to the judiciary might have aided Uruguayan judges to overcome these barriers. Instead, failure to reform the judiciary has prolonged its conservative nature and made judges slow in responding to international legal development in the human rights field. (shrink)

It has been argued that livestock farming is necessary to feed a growing population, that it enables efficient use of land and biomass that would otherwise be lost from the food system, that it produces manure that is necessary for crop cultivation, and helps improve the sustainability of cropping systems by inclusion of perennial forage crops in otherwise low-diversity crop rotations. In this paper, we analyze these arguments in favor of livestock farming. Through argumentation analysis based on scientific data, we (...) show that the arguments are either invalid or that their validity is limited to certain circumstances. Without taking into consideration any other potential arguments for livestock farming, or arguments against it, we conclude that the arguments analyzed here cannot in isolation provide justification for more than a small proportion of today’s livestock farming. (shrink)

Background When anti-cancer treatments have been given market authorization, but are not (yet) reimbursed within a healthcare system, physicians are confronted with ethical dilemmas. Arranging access through other channels, e.g., hospital budgets or out-of-pocket payments by patients, may benefit patients, but leads to unequal access. Until now, little is known about the perspectives of physicians on access to non-reimbursed treatments. This interview study maps the experiences and moral views of Dutch oncologists and hematologists.Methods A diverse sample of oncologists and hematologists (...) (n = 22) were interviewed. Interviews were analyzed thematically using Nvivo 12 qualitative data software.Results This study reveals stark differences between physicians’ experiences and moral views on access to anti-cancer treatments that are not (yet) reimbursed: some physicians try to arrange other ways of access and some physicians do not. Some physicians inform patients about anti-cancer treatments that are not yet reimbursed, while others wait for reimbursement. Some physicians have principled moral objections to out-of-pocket payment, while others do not.Conclusion Oncologists and hematologists in the Netherlands differ greatly in their perspectives on access to expensive anti-cancer treatments that are not (yet) reimbursed. As a result, they may act differently when confronted with dilemmas in the consultation room. Physicians working in different healthcare systems may face similar dilemmas. (shrink)

This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts (...) on self and others. The paper shows: that the impact of incidental findings may be greater than participants at first let on; incidental findings can have significant effects on participants’ social environment; and participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants’ experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. (shrink)

For feminists, working in/with the ‘posts’ is, always has been, and must be, a collective and collaborative endeavour. Increasingly, post-inquiry involves taking seriously multiplicities of humans, nonhumans, more-than-and-other-than-humans, multispecies and natureculture entities, including viral, microbial, elemental and atmospheric relationalities. The individual papers in this Special Issue, this editorial, and the Special Issue as a whole attest to this imperative pull to the collective-collaborative in seeking to explore the entangled relations of/between feminisms and the ‘posts’. As a collaborative-collective multiplicity, the Special (...) Issue interrogates what these entangled relations offer for reconfiguring gender and education research, theory, pedagogic practice, activism and praxis. (shrink)

During preparation for early abortion in Norway, an ultrasound examination is usually performed to determine gestation and viability. This article aims to provide a deeper understanding of women’s and health care personnel’s (HCP) experiences with ultrasound viewing during abortion preparation in the first trimester. Qualitative in-depth interviews with women who had been prepared for early abortion and focus group interviews with HCP from gynaecological units were carried out. A hermeneutic-phenomenological analysis, inspired by van Manen, was chosen. Thirteen women who were (...) pregnant and considering abortion in their first trimester and 20 HCP, namely, 19 registered nurses and one medical doctor, were recruited from gynaecological units at six hospitals. The study was approved by the ethics committee (2014/1276). The essential meaning structure of ‘autonomy under pressure’ consisted of two themes that expressed the different experiences of both the women and the HCP, namely, expectations versus precautions and choice versus protection. The women and HCP expressed different attitudes before the consultation that affected their experiences of the ultrasound examination. While the women had expectations of a clarification based on their choice to either see or not see the ultrasound image, HCP seemed to be more concerned with predetermined rules that they believed would protect the women. Consequently, the basis for dialogue was not optimal, and women’s autonomy was under pressure. Health care personnel are ethically challenged during preabortion ultrasound examinations. Meeting the individual woman’s needs and respecting her autonomy during preparation for abortion requires sensitivity, involvement, and dialogue skills by health personnel. According to the woman’s desire to be informed about the possibility of viewing the image during the abortion preparations, a dialogue that is focused in this direction should arise before the examination. (shrink)

Abduction, deduction and induction are different forms of inference in science. However, only a few attempts have been made to introduce the idea of abductive reasoning as an extended way of thinking about clinical practice in nursing research. The aim of this paper was to encourage critical reflections about abductive reasoning based on three empirical examples from nursing research and includes three research questions on what abductive reasoning is, how the process has taken place, and how knowledge about abductive reasoning (...) based on the examples can inform nursing research and clinical practice. The study has a descriptive and explorative approach using a convenience sample of three empirical studies from nursing research. The three studies illustrate different ways to enter the abductive reasoning process in steps. They represent new caring models, which offer visual and cognitive maps for expanding nursing research, education and thus informing care. Therefore, we suggest that abductive reasoning may be beneficial for different ways of knowing and demonstrates scientific innovation to shed new light on health phenomena, which can help researchers and practitioners to gain a broader and deeper understanding of nursing care inquiry. However, more studies are needed to broaden this scope. (shrink)

Background: While being prepared for abortions, some women experience decisional ambivalence during their encounters with health personnel at the hospital. Women’s experiences with these encounters have rarely been examined. Objective: The objective of this study was to explore ambivalent abortion-seeking women’s experiences of their encounters with health personnel. Research design: The data were collected in individual interviews and analysed with dialogical narrative analyses. Participants and research context: A total of 13 women (aged 18–36 years), who were uncertain of whether to (...) terminate their pregnancies during the first trimester, were interviewed before and after they made their decisions. The participants were recruited at six Norwegian outpatient clinics. Ethical considerations: Approval was granted by the Regional Committee for Medical and Health Research Ethics. Findings: The ambivalent pregnant women sought to make autonomous decisions while simultaneously involving their closest confidants and health personnel in the process. The following three types of narratives of women’s experiences with encounters with health personnel were identified: the respected women; the identified women; and the abandoned women. Discussion: The findings are discussed in terms of the ambivalent pregnant woman’s autonomous responsibility in considering an abortion and how her autonomy can be enabled or impaired during encounters with health personnel. Conclusion and implication: Although the women considered themselves autonomous and responsible for their final decisions, they wished health personnel were involved in their situations. The health personnel contributed by enabling or disabling the possibility of decision-making in accordance with the women’s values. The findings indicate that health personnel who care for women considering abortions must be trained in dialogical competence. (shrink)

Background: Nursing Ethics has featured several discussions on what good care comprises and how to achieve good care practices. We should “nurse” ethics by continuously reflecting on the way we “do” ethics, which is what care ethicists have been doing over the past few decades and continue to do so. Ethics is not limited to nursing but extends to all caring professions. In 2011, Elin Martinsen argued in this journal that care should be included as a core concept in medical (...) ethical terminology because of “the harm to which patients may be exposed owing to a lack of care in the clinical encounter,” specifically between doctors and patients. However, Martinsen leaves the didactical challenges arising from such a venture open for further enquiry. Objectives: In this article, we explore the challenges arising from implementing care-ethical insights into medical education. Research design: Medical education in the Netherlands is investigated through a “care-ethical lens”. This means exploring the possibility of enriching medical education with care-ethical insights, while at the same time discovering possible challenges emerging from such an undertaking. Participants and research context: This paper has been written from the academic context of a master in care ethics and policy. Ethical considerations We have tried to be fair and respectful to the authors discussed and take a neutral stance towards the findings portrayed. Findings: Several challenges are identified, which we narrow down to two types: didactical and non-didactical. Discussion and conclusion: In order to overcome these challenges, we must not underestimate the possible resistance to a paradigm shift. Our efforts should mainly target the learning that takes place in the clinical phases of medical training and should be accompanied by the creation of awareness in healthcare practice. (shrink)

This paper considers the meaning and use of the English particle man. It is shown that the particle does quite different things when it appears in sentence-initial and sentence-final position; the first use involves expression of an emotional attitude as well as, on a particular intonation, intensification; this use is analyzed using a semantics for degree predicates along with a separate dimension for the expressive aspect. Further restrictions on modification with the sentence-initial particle involving monotonicity and evidence are introduced and (...) analyzed. The sentence-final use can be viewed as strengthening the action performed by the sentence. A formal semantics is given by making use of dynamic techniques and, in a sense, dynamically simulating the modification of certain speech acts. Some empirical and theoretical extensions of the analyses are proposed and some consequences discussed. (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)

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)

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)

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)

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)

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)

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)

Aging populations have become a major concern in the developed world and are expected to require novel care strategies. Public policies, health-care regimes and technology developers alike stress the need for a more individualized care to meet the increased demand for care services in response to demographic change. Increasingly, care services are offered to individuals with diseases and or disabilities in their homes by means of Personalized Health-Monitoring (PHM) technologies. PHM-based home care is typically portrayed as the key to a (...) cost-effective future care that better can accommodate the needs of an aging population and promote care recipients’ independence. In light of the emerging technology-based home care, this article sets forth to investigate the significance and implications of a strong emphasis on independence in relation to this novel care form. Notions of independence as used by care planners, care providers and technology developers are examined in relation to ICT-based home care and the reasonableness of independence as an aim for future health-care is critically discussed. In conclusion, the need for a shift from a strong emphasis on independence to a right to healthy dependence is advocated. (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)

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)

Ethics and business -- Culture, business and ethics in a globalising world -- Moral development, moral positioning and decision-making -- Ethical dilemmas and decision-making (models) -- Professional ethics -- Organisational ethics -- Corporate social responsibility -- Sustainability and business -- Business and human rights -- Responsible entrepreneurship and innovation -- Information technology and business.

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 paper aims to deal with an increasing securitization and criminalisation of migration in Europe highlighting ethical implications of the current surveillance-based EU migration governance. It is shown that EU member states employ surveillance regimes to control movements across borders and to restrict migrants' access to their territories. The ethical acceptability of such practices is questioned with a particular focus on the “freedom of movement”., – In order to establish the extent to which the current EU migration governance can (...) be considered ethically justifiable, the article starts out from the right to mobility as coded in the UN Declaration of Human Rights. It is shown that the current migration governance obstructs the rights specified in Articles 13 and 14. At the same time, shortcomings of the UN declaration are discussed and the need for a better protection of the freedom of movement is suggested., – It is established that human rights are such that promote normative agency and a type of rights that trump, for example, states interests in restricting access to their territories do not outweigh individuals rights to seek asylum. In order to make this relation more clear however, the right to mobility should be made symmetric, including both a right to leave and to enter (but not a right to immigrate and settle). An extensive right to freedom of movement is advocated based on the significance of mobility for normative agency. A substantial right to mobility supports the right to seek asylum., – As of yet, ethical implications of surveillance-based border control are under-researched. (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)

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)

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)