Through examples of embodied and learning -centered pedagogy, we discuss transformative learning of transgressive topics. We begin with a taxonomy of types of learning our students undergo as they resolve inconsistencies among their pre-existing beliefs and the material they confront in our course on feminist ethics and epistemology. We then discuss ways to help students maximize their learning while confronting internal inconsistencies. While we focus on feminist topics, our approach is broad enough to be relevant to anyone teaching a transgressive (...) or controversial topic. (shrink)

Through examples of embodied and learning-centered pedagogy, we discuss transformative learning of transgressive topics. We begin with a taxonomy of types of learning our students undergo as they resolve inconsistencies among their pre-existing beliefs and the material they confront in our course on feminist ethics and epistemology. We then discuss ways to help students maximize their learning while confronting internal inconsistencies. While we focus on feminist topics, our approach is broad enough to be relevant to anyone teaching a transgressive or (...) controversial topic. (shrink)

A virtue account is focused on the character of those who argue. It is frequently assumed, however, that virtues are not action guiding, since they describe how to be and so fail to give us specific actions to take in a sticky situation. In terms of argumentation, we might say that being a charitable arguer is virtuous, but knowing so provides no details about how to argue successfully. To close this gap, I develop a parallel with the thick-thin distinction from (...) ethics and use Hursthouse’s notion of “v-rules”. I also draw heavily from the work in argumentation by Daniel Cohen to develop Wayne Brockriede’s notion of arguing lovingly. But “argue lovingly” has a delicious ambiguity. For Brockriede it describes how we engage with others arguers. It can also mean, however, a loving attachment to knowledge, understanding, and truth. Applying the thick-thin distinction to argumentation in general and loving argumentation in particular shows that a virtue theoretic approach to argumentation is valuable for two reasons: it can provide one articulation of what it means to be a virtuous arguer and provide some insights into how to become one. (shrink)

ABSTRACTWe claim that venting can be epistemic work: if one vents to the right sort of person, knowledge can be gained about an oppressive social structure, one’s place in it, and how to repair the epistemic damage it creates. To justify this claim, we define both epistemic damage and venting, and contrast venting with related notions such as complaining and ranting. Using Code’s understanding of testimony, Dotson’s notion of a linguistic exchange, and Fricker’s distinction between testimonial and hermeneutical injustice, we (...) describe when and how venting is epistemic work. We also discuss the way venting is distinct from consciousness raising. We conclude that although one goal of venting is to repair epistemic damage for individual women, venting’s positive epistemic impact prepares women to challenge hermeneutical injustice. (shrink)

The literature on drawing provides a justification for using drawing in the teaching of philosophy. The aim of the essay is to show how drawing as a pedagogy, though unusual in philosophy, fulfills high-quality teaching desiderata: make it personal, go beyond the text, allow students to show and explain their work, and unify the work of the course. I explain these four desiderata and how students complete drawing exercises to develop understanding, generate insights, and make philosophic discoveries. I begin by (...) explaining and justifying the pedagogical desiderata. I discuss the literature on drawing-to-learn and concept mapping and apply its insights to teaching philosophy. Finally, I describe my exercises on color theory, two-point perspective exercises, my modifications to concept mapping, and the use of summative drawings. (shrink)

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Addressing fake news requires a multidisciplinary effort The rise of fake news highlights the erosion of long-standing institutional bulwarks against misinformation in the internet age. Concern over the problem is global. However, much remains unknown regarding the vulnerabilities of individuals, institutions, and society to manipulations by malicious actors. A new system of safeguards is needed. Below, we discuss extant social and computer science research regarding belief in fake news and the mechanisms by which it spreads. Fake news has a long (...) history, but we focus on unanswered scientific questions raised by the proliferation of its most recent, politically oriented incarnation. Beyond selected references in the text, suggested further reading can be found in the supplementary materials. (shrink)

Contemporary understanding of the mechanisms of disease increasingly points to examples of “genetic diseases” with an infectious component and of “infectious diseases” with a genetic component. Such blurred boundaries generate ethical, legal, and social issues and highlight historical contexts that must be examined when incorporating host genomic information into the prevention, outbreak control, and treatment of infectious diseases.

Background Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient’s preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient’s autonomy can be protected and promoted. Aim To describe nurses’ experiences of dealing with older patients’ autonomy when cared for in emergency departments (EDs). Research (...) design This study adopted reflective lifeworld theory and a phenomenological design. Participants and research context A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden. Ethical considerations The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent. Findings Nurses’ experiences of dealing with older patients’ autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: ‘Being hampered by prioritization under stress’, ‘Balancing paternalism and patient autonomy’, ‘Making decisions without consent in the patient’s best interests’ and ‘Being trapped by notions of legitimate care needs’. Conclusion Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient’s ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses’ protection and promotion of older patients’ autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient’s voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of ‘relational autonomy’. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (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)

BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...) inform and stimulate local policy development and revision on the continent.MethodsTo identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion.ResultsDocuments that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits.ConclusionsEnforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders. (shrink)

In this review, we describe some of the central philosophical issues facing origins-of-life research and provide a targeted history of the developments that have led to the multidisciplinary field of origins-of-life studies. We outline these issues and developments to guide researchers and students from all fields. With respect to philosophy, we provide brief summaries of debates with respect to (1) definitions (or theories) of life, what life is and how research should be conducted in the absence of an accepted theory (...) of life, (2) the distinctions between synthetic, historical, and universal projects in origins-of-life studies, issues with strategies for inferring the origins of life, such as (3) the nature of the first living entities (the “bottom up” approach) and (4) how to infer the nature of the last universal common ancestor (the “top down” approach), and (5) the status of origins of life as a science. Each of these debates influences the others. Although there are clusters of researchers that agree on some answers to these issues, each of these debates is still open. With respect to history, we outline several independent paths that have led to some of the approaches now prevalent in origins-of-life studies. These include one path from early views of life through the scientific revolutions brought about by Linnaeus (von Linn.), Wöhler, Miller, and others. In this approach, new theories, tools, and evidence guide new thoughts about the nature of life and its origin.We also describe another family of paths motivated by a” circularity” approach to life, which is guided by such thinkers as Maturana & Varela, Gánti, Rosen, and others. These views echo ideas developed by Kant and Aristotle, though they do so using modern science in ways that produce exciting avenues of investigation. By exploring the history of these ideas, we can see how many of the issues that currently interest us have been guided by the contexts in which the ideas were developed. The disciplinary backgrounds of each of these scholars has influenced the questions they sought to answer, the experiments they envisioned, and the kinds of data they collected. We conclude by encouraging scientists and scholars in the humanities and social sciences to explore ways in which they can interact to provide a deeper understanding of the conceptual assumptions, structure, and history of origins-of-life research. This may be useful to help frame future research agendas and bring awareness to the multifaceted issues facing this challenging scientific question. (shrink)

The research aimed to produce an appropriate product, namely a cooperative learning model in the rituals of Hajj, to realize an independent Hajj congregation in terms of knowledge, understanding, attitudes, and skills, to specify the level of validity, realism, effectiveness, and attractiveness and so that the problems above can be resolved immediately resolved. This research uses the Research and Development (R&D) approach to achieve the aforementioned objectives. In general, the research and development model is the Four D model. This model (...) consists of four stages of development, i.e., define, design, develop, and develop. The results of the preliminary study / pre-field survey show that in terms of teaching performance of Hajj rituals, it appears that the learning services provided by the instructor/instructor have not been able to accommodate and appreciate the differences in ability (attitude) of Hajj pilgrims. The results of the model development trial show that "(1) it is necessary to improve the teaching performance of the Hajj ritual guide / instructor, (2) the development of the model requires specific teaching performance of Hajj rituals from the supervisor / instructor, and does not want excessive facilities and facilities. (3) there is an increase in the learning activities of Hajj pilgrims in all small groups (high, medium and low), (4) the realization of the optimization of the achievement of learning outcomes for Hajj rituals for Hajj pilgrims, both in the high, medium, and low groups. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

This study analyses sequences where people with dementia are positioned as third parties in stories about their own lives. Previous research emphasises how people with dementia are frequently excluded from social encounters, and how others tend to speak for or about them in their co-presence. Drawing on conversation analytic methods when analysing 15 video recorded interviews with Swedish couples living with dementia, we argue that telling stories in which a spouse with dementia is positioned as a third party in his (...) or her co-presence does not have to be an activity of exclusion. Rather, among couples, third-party positioning is a multifaceted activity where couples employ different practices to organise participation frameworks and manage both inclusion and exclusion in talk-in-interaction. Furthermore, we show how participants display joint speakership and counteract actions of exclusion by making use of various communicative resources such as gaze, touch and bodily orientation. (shrink)

In the Independent Campus Learning Program [Merdeka Belajar Kampus Merdeka (MBKM)], the 5-1-2 learning pattern is used in the undergraduate program. In implementing this pattern, curriculum coherence is needed between study programs and between institutions. A model for developing a curriculum based on local wisdom and multiculturalism was created to improve the micro-skills of program graduates. A model for developing a curriculum based on local wisdom and multiculturalism was created to improve the micro-skills of program graduates. A model for developing (...) a curriculum based on local wisdom and multiculturalism was created to improve the micro-skills of program graduates. In order to attain the objective, a hierarchical pattern of relationships is employed, beginning with the central construct, primary dimension, and indicator. A structural Equation Model (SEM) is used to analyse the relationship between variables, while an inductive approach is used for exploratory purposes to identify factors. In order to evaluate the dependability of the model, a study was conducted at two different universities in Indonesia: Sultan Ageng Tirtayasa University in Serang, Banten Province, and Galuh Ciamis University in West Java Province. The study involved testing the coherence of the curriculum of various programs at both universities and evaluating the micro-skills of graduates who had participated in the MBKM program. Samples from the 4 study programs implementing MBKM at the two universities were used to test curriculum coherence. Then, to determine the increase in graduates' micro-skills, a sample of 70 students was used. The results of the analysis show that curriculum development has a direct effect on improving graduates' micro-skills. In developing the curriculum, three factors strengthen micro skills improvement: development of knowledge, responsiveness to technological developments, and relevance to needs. (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)

This conversation analytic study investigates how couples manage conflicting knowledge claims when one of the persons has dementia. The data are video-recordings of 16 couples talking with a third party. The analysis focuses on the negotiation of epistemic rights, more precisely how partners initiate repair and correct claims made by the PWD on matters belonging to the latter’s epistemic domain. We identified three main practices for correcting the PWD: correcting the statement, thereby claiming epistemic authority for oneself and denying it (...) to the PWD, inviting the PWD to self-correct, thereby attributing some epistemic authority to the PWD, and disagreeing and providing reasons for one’s alternative claim, establishing a more symmetric epistemic gradient. The PWDs responses to the corrections displayed different degrees of acceptance, ranging from self-denigration to resistance and insistence. (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)

Aworkshop was held August 26–28, 2015, by the Earth- Life Science Institute (ELSI) Origins Network (EON, see Appendix I) at the Tokyo Institute of Technology. This meeting gathered a diverse group of around 40 scholars researching the origins of life (OoL) from various perspectives with the intent to find common ground, identify key questions and investigations for progress, and guide EON by suggesting a roadmap of activities. Specific challenges that the attendees were encouraged to address included the following: What key (...) questions, ideas, and investigations should the OoL research community address in the near and long term? How can this community better organize itself and prioritize its efforts? What roles can particular subfields play, and what can ELSI and EON do to facilitate research progress? (See also Appendix II.) The present document is a product of that workshop; a white paper that serves as a record of the discussion that took place and a guide and stimulus to the solution of the most urgent and important issues in the study of the OoL. This paper is not intended to be comprehensive or a balanced representation of the opinions of the entire OoL research community. It is intended to present a number of important position statements that contain many aspirational goals and suggestions as to how progress can be made in understanding the OoL. The key role played in the field by current societies and recurring meetings over the past many decades is fully acknowledged, including the International Society for the Study of the Origin of Life (ISSOL) and its official journal Origins of Life and Evolution of Biospheres, as well as the International Society for Artificial Life (ISAL). (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)

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

Background: 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)

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

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

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

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