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)

Natural language contains many expressions with underspecified emotive content. This paper proposes a way to resolve such underspecification. Nonmonotonic inference over a knowledge base is used to derive an expected interpretation for emotive expressions in a particular context. This ‘normal’ meaning is then taken to influence the hearer’s expectations about probable interpretations, and, because of these probable interpretations, the decisions of the speaker about when use of underspecified emotive terms is appropriate.

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)

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)

Background: Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual. Objectives: The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway’s renamed and revised Patients’ and Service Users’ Rights Act (originally Patients’ Rights Act, 1999) and published comments which accompanying this legislation (...) from the Norwegian Ministry of Health and Care Service. Research design: A constructivist design was used, and Fairclough’s critical discourse approach was adopted to analyze the text of the Patients’ and Service Users’ Rights Act and comments. Findings: The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients’ trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as “troublesome.” Conclusion: Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient. (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)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (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)

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)

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)

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)

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)

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)

Increasing the participation of women in top-level corporate boards is high on the agenda of policy-makers. Yet, we know little about director appointment dynamics and the drivers and impediments of women appointments. This study builds on organizational and group-level behavior theories and empirically investigates how ex-ante board structures and gender-specific board dynamics impact the representation of women on corporate boards. We study boards of listed firms in Europe between 2002 and 2019 and find a declining appointment probability for every additional (...) woman, i.e., the share of women already on the board negatively predicts the likelihood of additional women appointments. Further, we find evidence of a replacement effect, i.e., the likelihood of a woman being appointed as director is significantly larger when a woman, compared to when a man, leaves the board. We do not find spillover effects from non-executive to executive boards. These results are robust to econometric model specifications that address potential endogeneity concerns using matching and instrumental variables. Our results confirm that board director appointments are gender specific and suggest that demand-side factors such as explicit and implicit norms drive women appointments up to a certain threshold. (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)

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)

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

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)

Response-dependence theses are usually formulated in terms of a priori true biconditionals of roughly the form 'something, x, falls under the concept 'F' ↔ x would elicit response R from subjects S under conditions C'. Such formulations are vulnerable to conditional fallacy problems; counterexamples threaten whenever the C-conditions' coming to obtain might alter the object with respect to F. Crispin Wright has suggested that such problems can be avoided by placing the C-conditions in a proviso. This ensures that any changes (...) triggered by the C-conditions' coming to obtain will be irrelevant to the truth of the biconditional. I argue that this move leaves the equations vulnerable to counterexamples of a slightly different kind: Cases where the change is triggered, not by the C-conditions' coming to obtain, but by the response. I consider two ways to resist these counterexamples, and argue that both are insufficient. The upshot is a challenge that must be met if provisoed biconditionals are to serve their purpose. (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 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)

We review evidence regarding Tomasello et al.'s proposal that individuals with autism understand intentions but fail socially because of a lack of motivation to share intentions. We argue that they are often motivated to understand others but fail because they lack the perceptual integration skills that are needed to apply their basically intact theory of mind skills in complex social situations.

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)

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)

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...

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)

Todas las reflexiones acerca del signo –convencionalismo-naturalismo, realismo- nominalismo, empirismo-racionalismo, concepción diádica-concepción triádica- se articulan en torno a las relaciones entre signo, pensamiento y realidad. Aunque todos coinciden en que un signo es "aliquid stat pro aliquo", esta antigua definición de carácter muy general adquiere implicaciones muy distintas según los presupuestos de cada autor y, todavía hoy, carecemos de un consenso en la definición de "signo".

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)

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)

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)

Biodiversity initiatives have traditionally operated within a 'science-first' model of environmental decision - making. The model assumes a hierarchical relationship in which scientific knowledge is elevated above other knowledge systems. Consequently, other types of knowledge held by the public, such as traditional or lay knowledges, are undervalued and under -represented in biodiversity projects. Drawing upon two case studies of biodiversity initiatives in Canada, this paper looks at the role that constructivist conceptions of education play in the integration of alternative knowledge (...) systems in environmental decision - making. In so doing, it argues that the conservation, sustainable use and equitable sharing goals outlined by the Convention on Biological Diversity demand new models of governance which embrace the adaptive management qualities of learning organisations. (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)