In the fall of 2019, Trøndelag County Council, Norway, organized a Climate Workshop for children and youth. The intention of the workshop was to include children’s and youth’s perspectives as a foundation for a policy document titled “How we do it in Trøndelag. Strategy for transformations to mitigate climate change”. The workshop involved a range of creative and discussion tools for input on sustainable development and climate politics. In this article, we aim to describe and discuss innovative practices that include (...) children and youth in policymaking related to climate action, and discuss the theoretical implications of such policymaking in relation to children’s rights, young citizenship, and intergenerational justice. We employ a generational framework and perceive climate politics as inherently ingrained in intergenerational justice, where no generation has a superior claim to the earth’s resources, yet power is unfairly concentrated and accumulated among adult generations. We draw on contributions by various stakeholders involved: Two young workshop participants, two county council policymakers, and an interdisciplinary team of researchers from Childhood Studies and Design. (shrink)

Definition of the problem The umbrella term “explicability” refers to the reduction of opacity of artificial intelligence (AI) systems. These efforts are challenging for medical AI applications because higher accuracy often comes at the cost of increased opacity. This entails ethical tensions because physicians and patients desire to trace how results are produced without compromising the performance of AI systems. The centrality of explicability within the informed consent process for medical AI systems compels an ethical reflection on the trade-offs. Which (...) levels of explicability are needed to obtain informed consent when utilizing medical AI? Arguments We proceed in five steps: First, we map the terms commonly associated with explicability as described in the ethics and computer science literature, i.e., disclosure, intelligibility, interpretability, and explainability. Second, we conduct a conceptual analysis of the ethical requirements for explicability when it comes to informed consent. Third, we distinguish hurdles for explicability in terms of epistemic and explanatory opacity. Fourth, this then allows to conclude the level of explicability physicians must reach and what patients can expect. In a final step, we show how the identified levels of explicability can technically be met from the perspective of computer science. Throughout our work, we take diagnostic AI systems in radiology as an example. Conclusion We determined four levels of explicability that need to be distinguished for ethically defensible informed consent processes and showed how developers of medical AI can technically meet these requirements. (shrink)

Recent years have witnessed intensive efforts to specify which requirements ethical artificial intelligence (AI) must meet. General guidelines for ethical AI consider a varying number of principles important. A frequent novel element in these guidelines, that we have bundled together under the term explicability, aims to reduce the black-box character of machine learning algorithms. The centrality of this element invites reflection on the conceptual relation between explicability and the four bioethical principles. This is important because the application of general ethical (...) frameworks to clinical decision-making entails conceptual questions: Is explicability a free-standing principle? Is it already covered by the well-established four bioethical principles? Or is it an independent value that needs to be recognized as such in medical practice? We discuss these questions in a conceptual-ethical analysis, which builds upon the findings of an empirical document analysis. On the example of the medical specialty of radiology, we analyze the position of radiological associations on the ethical use of medical AI. We address three questions: Are there references to explicability or a similar concept? What are the reasons for such inclusion? Which ethical concepts are referred to? (shrink)

Withholding and withdrawing treatment are widely regarded as ethically equivalent in medical guidelines and ethics literature. Health care personnel, however, widely perceive moral differences between withholding and withdrawing. The proponents of equivalence argue that any perceived difference can be explained in terms of cognitive biases and flawed reasoning. Thus, policymakers should clear away any resistance to accept the equivalence stance by moral education. To embark on such a campaign of changing attitudes, we need to be convinced that the ethical analysis (...) is correct. Is it? In this article, I take a closer look at the moral relation between withholding and withdrawing. My conclusion is that withholding and withdrawing are not in general ethically equivalent. Thus, medical guidelines should be rewritten, and rather than being “educated” away from their sound judgments, medical professionals and patients should have nuanced medico-ethical discussions regarding withholding and withdrawing treatment. (shrink)

Purpose: The method of diagnosing diabetic retinopathy (DR) through artificial intelligence (AI)-based systems has been commercially available since 2018. This introduces new ethical challenges with regard to obtaining informed consent from patients. The purpose of this work is to develop a checklist of items to be disclosed when diagnosing DR with AI systems in a primary care setting. -/- Methods: Two systematic literature searches were conducted in PubMed and Web of Science databases: a narrow search focusing on DR and a (...) broad search on general issues of AI-based diagnosis. An ethics content analysis was conducted inductively to extract two features of included publications: (1) novel information content for AI-aided diagnosis and (2) the ethical justification for its disclosure. -/- Results: The narrow search yielded n = 537 records of which n = 4 met the inclusion criteria. The information process was scarcely addressed for primary care setting. The broad search yielded n = 60 records of which n = 11 were included. In total, eight novel elements were identified to be included in the information process for ethical reasons, all of which stem from the technical specifics of medical AI. -/- Conclusions: Implications for the general practitioner are two-fold: First, doctors need to be better informed about the ethical implications of novel technologies and must understand them to properly inform patients. Second, patient's overconfidence or fears can be countered by communicating the risks, limitations, and potential benefits of diagnostic AI systems. If patients accept and are aware of the limitations of AI-aided diagnosis, they increase their chances of being diagnosed and treated in time. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Volume 19, Issue 6, June 2019, Page W5-W9.

Background: Ethics rounds are one way to support healthcare personnel in handling ethically difficult situations. A previous study in the present project showed that ethics rounds did not result in significant changes in perceptions of how ethical issues were handled, that is, in the ethical climate. However, there was anecdotal evidence that the ethics rounds were viewed as a positive experience and that they stimulated ethical reflection. Aim: The aim of this study was to gain a deeper understanding of how (...) the ethics rounds were experienced and why the intervention in the form of ethics rounds did not succeed in improving the ethical climate for the staff. Research design: An exploratory and descriptive design with a qualitative approach was adopted, using individual interviews. Participants and research context: A total of 11 healthcare personnel, working in two different psychiatry outpatient clinics and with experience of participating in ethics rounds, were interviewed. Ethical considerations: The study was based on informed consent and was approved by one of the Swedish Regional Ethical Review Boards. Findings: The participants were generally positive about the ethics rounds. They had experienced changes by participating in the ethics rounds in the form of being able to see things from different perspectives as well as by gaining insight into ethical issues. However, these changes had not affected daily work. Discussion: A crucial question is whether or not increased reflection ability among the participants is a good enough outcome of ethics rounds and whether this result could have been measured in patient-related outcomes. Ethics rounds might foster cooperation among the staff and this, in turn, could influence patient care. Conclusion: By listening to others during ethics rounds, a person can learn to see things from a new angle. Participation in ethics rounds can also lead to better insight concerning ethical issues. (shrink)

A research biobank is a collection of personal health and lifestyle information, including genetic samples of yet unknown but possibly large information potential about the participant. For the participants, the risk of taking part is not bodily harm but infringements of their privacy and the harmful consequences such infringements might have. But what do we mean by privacy? Which harms are we talking about? To address such questions we need to get a grip on what privacy is all about and (...) aim for a fruitful perspective on the issues of property and privacy rights in the context of biobanking. This paper argues that the limits and handling of private matters is determined in specific social relations. The crucial point is thus to determine which information and activities are or are not the legitimate concern of others. Privacy and property rights should be seen as balanced by duties, that is as inherently relational interests extending into the public sphere, rather than to see these rights as the control of an object—for instance the participant’s biobank material. (shrink)

The brain seems to be able to generate and uphold sensitization by itself, based on previous experience, or genetic disposition. This seems to be particularly important for muscle pain. There seem to be positive feedback loops where pain produces more pain, and more sensitization. Musculoskeletal pain is the most common pain state. It amounts to almost 50% of all long term sickness absence. But other subjective complaints are also common, and may depend on sensitization. Sensitization has been introduced as an (...) explanation for subjective complaints from the gastrointestinal tract and the brain, like fatigue, tiredness, dizziness, and vertigo. [coderre & katz]. (shrink)

Biomarker-based predictive tests for subjectively asymptomatic Alzheimer’s disease (AD) are utilized in research today. Novel applications of artificial intelligence (AI) promise to predict the onset of AD several years in advance without determining biomarker thresholds. Until now, little attention has been paid to the new ethical challenges that AI brings to the early diagnosis in asymptomatic individuals, beyond contributing to research purposes, when we still lack adequate treatment. The aim of this paper is to explore the ethical arguments put forward (...) for AI aided AD prediction in subjectively asymptomatic individuals and their ethical implications. The ethical assessment is based on a systematic literature search. Thematic analysis was conducted inductively of 18 included publications. The ethical framework includes the principles of autonomy, beneficence, non-maleficence, and justice. Reasons for offering predictive tests to asymptomatic individuals are the right to know, a positive balance of the risk-benefit assessment, and the opportunity for future planning. Reasons against are the lack of disease modifying treatment, the accuracy and explicability of AI aided prediction, the right not to know, and threats to social rights. We conclude that there are serious ethical concerns in offering early diagnosis to asymptomatic individuals and the issues raised by the application of AI add to the already known issues. Nevertheless, pre-symptomatic testing should only be offered on request to avoid inflicted harm. We recommend developing training for physicians in communicating AI aided prediction. (shrink)

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether (...) to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (shrink)

Respecting people’s consent choices for use of their material and data is a cornerstone of biobank ethics. Participation in biobanks is characteristically based on broad consent that presupposes an ongoing possibility of informing and interacting with participants over time. The death of a participant means the end of any interaction, but usually not the end of participation. Research on causes of death makes biobank material from deceased participants extremely valuable. But as new research questions and methods develop over time, the (...) question arises whether stored biobank material from deceased persons still can be used on the basis of their broad consent. In this paper, we discuss policies for postmortem use of biobank material, including consent options, proxy consent and criteria for limitation of types of use and duration of storage. We conclude that the interests of participants in biobank research are best served by asking at enrolment if and how the biobank material may be used after death. We state that the use of biobank material from deceased participants should be delimited both by their consent and by the prevailing broad consent choices of living participants.Biobanks also need to inform participants at enrolment about the duration of storage of biobank material or at minimum have procedures for deciding how long material will be stored for and for which purpose. For older collections, in the absence of such information or consent options, relevant authorities should decide. (shrink)

For some time we have seen a shift away from direct marketing, a core feature and dominant exchange form in the alternative food world, towards a greater role for intermediation. Yet, we still need to better understand to what extent and in what ways new mediated Alternative Food Networks represent an evolution of or departure from core tenets of alternative food systems. This paper focuses on AFNs with new intermediaries that connect small-scale producers with urban end-consumers. Based on original research (...) in Frankfurt, Berlin, and Calgary, we analyze three different types of mediated AFNs: one driven by consumers, one by an external intermediary, and one by producers. Our cases include non-capitalist, capitalist, and alternative capitalist economic practices as identified by Gibson-Graham. Conceptually, we base our analysis on the three-pillar-model of alternative agri-food systems, which we further refine. Besides comparing our cases with each other, for heuristic purposes we also compare them with an ideal-type model that adheres to core tenets of alterity in all three pillars. Our empirical analysis shows that intermediary organizations can bring important benefits and that mediated AFNs are in principle able to hold true to the core tenets of alternative agri-food systems. However, it is very important to develop models of democratic control and ownership as well as economic arrangements in which created value is fairly shared. Only then can the potentials of new mediated models be realized while the pitfalls of the conventional systems they seek to replace be avoided. (shrink)

In a world where issues of food safety and food security are increasingly important, the social responsibility of central actors in the food chain—producers and the main grocery chains—becomes more pressing. As a response, these actors move from implicitly assuming social responsibilities implied in laws, regulations and ethical customs, towards explicitly expressing social responsibilities. In this paper, we discuss the ethical values relevant for the social responsibility of central food producers and retailers in Norway, one of the most subsidized and (...) protected areas of food production in the world. How do the actors perceive and express their social responsibility, and—given their position in the local, national and global market—how should they handle these responsibilities? We analyze Tine and Nortura, two producers owned by farmer cooperatives with market regulator function, as well as Coop—a dominant grocery chain in Norway, with basis in the same public ownership model as the farmer-owned cooperative producers. While the complex roles of these key actors in the Norwegian food market have been criticized from several angles, we argue that these multifaceted roles put them in a good position to promote informed consumer choices in a globalized market. (shrink)

A systematic literature review on evaluation of clinical ethics support services in mental healthcare is presented and discussed. The focus was on (a) forms of clinical ethics support services, (b) evaluation of clinical ethics support services, (c) contexts and participants and (d) results. Five studies were included. The ethics support activities described were moral case deliberations and ethics rounds. Different qualitative and quantitative research methods were utilized. The results show that (a) participants felt that they gained an increased insight into (...) moral issues through systematic reflection; (b) there was improved cooperation among multidisciplinary team members; (c) it was uncertain whether clinical ethics support services led to better patient care; (d) the issue of patient and client participation is complex; and (e) the implementation process is challenging. Clinical ethics support services have mainly been studied through the experiences of the participating facilitators and healthcare professionals. Hence, there is limited knowledge of whether and how various types of clinical ethics support services influence the quality of care and how patients and relatives may evaluate clinical ethics support services. Based on the six excluded ‘grey zone articles’, in which there was an implicit focus on ethics reflection, other ways of working with ethical reflection in practice are discussed. Implementing and evaluating clinical ethics support services as approaches to clinical ethics support that are more integrated into the development of good practice are in focus. In order to meet some of the shortcomings of the field of clinical ethics support services, a research project that aims to strengthen ethics support in the mental health services, including patients’ and caregivers’ views on ethical challenges, is presented. (shrink)

Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a (...) remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation. (shrink)

Few qualitative studies explore the phenomenon of positive ethical climate and what actions are perceived as promoting it. Therefore, the aim of this study was to explore and describe actions that acute care ward nurses perceive as promoting a positive ethical climate. The critical incident technique was used. Interviews were conducted with 20 nurses at wards where the ethical climate was considered positive, according to a previous study. Meeting the needs of patients and next of kin in a considerate way, (...) as well as receiving and giving support and information within the work group, promoted a positive ethical climate. Likewise, working as a team with a standard for behaviour within the work group promoted a positive ethical climate. Future research should investigate other conditions that might also promote a positive ethical climate. (shrink)

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants (...) in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services. (shrink)

Professionals within the mental health services face many ethical dilemmas and challenging situations regarding the use of coercion. The purpose of this study was to evaluate the significance of participating in systematic ethics reflection groups focusing on ethical challenges related to coercion. In 2013 and 2014, 20 focus group interviews with 127 participants were conducted. The interviews were tape recorded and transcribed verbatim. The analysis is inspired by the concept of ‘bricolage’ which means our approach was inductive. Most participants report (...) positive experiences with participating in ethics reflection groups: A systematic and well-structured approach to discuss ethical challenges, increased consciousness of formal and informal coercion, a possibility to challenge problematic concepts, attitudes and practices, improved professional competence and confidence, greater trust within the team, more constructive disagreement and room for internal critique, less judgmental reactions and more reasoned approaches, and identification of potential for improvement and alternative courses of action. On several wards, the participation of psychiatrists and psychologists in the reflection groups was missing. The impact of the perceived lack of safety in reflection groups should not be underestimated. Sometimes the method for ethics reflection was utilised in a rigid way. Direct involvement of patients and family was missing. This focus group study indicates the potential of ethics reflection groups to create a moral space in the workplace that promotes critical, reflective and collaborative moral deliberations. Future research, with other designs and methodologies, is needed to further investigate the impact of ethics reflection groups on improving health care practices. (shrink)

This commentary argues for the inclusion of the neurophysiological arousal concept to help understanding the brain mechanisms of emotions and reward and the cognitive mechanisms involved.

This special issue of Etikk i praksis features papers that articulate and discuss approaches and methodology that seek to make normative research activity and research output productive in contexts of ongoing societal and technological decision-making. The articles in various ways and to a varying degree exemplify and reflect on the methodology of the study of normativity in innovation.

Background: To better understand the kinds of ethical challenges that emerge when using coercion in mental healthcare, and the importance of these ethical challenges, this article presents a systematic review of scientific literature. Methods: A systematic search in the databases MEDLINE, PsychInfo, Cinahl, Sociological Abstracts and Web of Knowledge was carried out. The search terms derived from the population, intervention, comparison/setting and outcome. A total of 22 studies were included. Ethical considerations: The review is conducted according to the Vancouver Protocol. (...) Results: There are few studies that study ethical challenges when using coercion in an explicit way. However, promoting the patient’s best interest is the most important justification for coercion. Patient autonomy is a fundamental challenge facing any use of coercion, and some kind of autonomy infringement is a key aspect of the concept of coercion. The concepts of coercion and autonomy and the relations between them are very complex. When coercion is used, a primary ethical challenge is to assess the balance between promoting good (beneficence) and inflicting harm (maleficence). In the included studies, findings explicitly related to justice are few. Some studies focus on moral distress experienced by the healthcare professionals using coercion. Conclusion: There is a lack of literature explicitly addressing ethical challenges related to the use of coercion in mental healthcare. It is essential for healthcare personnel to develop a strong awareness of which ethical challenges they face in connection with the use of coercion, as well as challenges related to justice. How to address ethical challenges in ways that prevent illegitimate paternalism and strengthen beneficent treatment and care and trust in connection with the use of coercion is a ‘clinical must’. By developing a more refined and rich language describing ethical challenges, clinicians may be better equipped to prevent coercion and the accompanying moral distress. (shrink)

The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician—nurse collaboration, lack of (...) confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed. (shrink)

Introduction: We discuss Carol Gilligan's original concept of mature care in the light of the altruistic approach to caring and good clinical judgment. Discussion: In particular, we highlight how the concept of mature care can capture important challenges in today's nursing. Further, we illuminate how mature care might differ normatively from an altruistic approach to caring and the traditional prudential virtues in nursing. We also discuss similarities between mature care and virtue ethics. Conclusion: For nursing and nurses' identity, in today's (...) health care system that is increasingly pressured to ‘produce' health, we believe it is important to both developing further theories on mature care and having normative discussions about care. (shrink)

When you enrol as a student you are assigned a ‘place’ in education. This assignment will gradually imply an assessment of you as a human being. We argue that these are processes taking place in educational practice. In our orientation in educational research an orientation towards a theory of action has been inspired by the French philosopher Paul Ricoeur. In our search for an educational practice that could describe what it is that makes the student a capable human being we (...) continue in the spirit of Ricoeur. The text is divided in two parts. In the first part, Basic Capabilities in Education, we are asking: Who is the student if education is the process where the student learns to be a capable human being? We try to answer this with the help of Ricoeur’s phenomenology of the capable human being which is structured around the capacity to speak, to act, to tell and finally to impute. In the second part, Institutional Mediations of Capabilities in Education, we try to show how the transmission of the human capacities to an actualization through education at an institutional level, represented by the teacher, is necessary. If the student shall become a capable human being s/he has to have conditions for actualizations of her capacities. A paradigm for this is found in the process of assigning and assessing in education. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

In recent years, the attention on the use of coercion in mental health care has increased. The use of coercion is common and controversial, and involves many complex ethical challenges. The research question in this study was: What kind of ethical challenges related to the use of coercion do health care practitioners face in their daily clinical work?

Rosamond Rhodes and John Harris have both recently argued that we all have a general moral duty to participate in medical research. However, neither Rhodes' nor Harris' arguments in support of this obligation stand up to scrutiny, and severe and convincing criticism has been levelled against their case. Still, to refute their arguments is not to refute the conclusion. There seems to be some truth in the view that when people are asked to take part in medical research, their choice (...) is not completely morally neutral. In this article, we argue that the proper question to ask is when, rather than if, a certain moral duty to volunteer for medical research can be appealed to. To answer this question, we need a denser description of relevant research projects and their context rather than just describing medical research in general. Drawing on our study of participants in the Norwegian HUNT biobank, we use the normative implications of the Norwegian concept «dugnad» as an analogy to discuss the requirement of providing neutral information to potential biobank participants in order to promote their free and informed decision as to whether or not to take part. We suggest that normative recruitment is not just a question of principles and ethics. It is also a question of research design and the creation of the common good in the community where the research takes place. (shrink)

The so‐called “empirical turn” in bioethics gave rise to extensive theoretical and methodological debates and has significantly shaped the research landscape from two decades ago until the present day. Attentive observers of the evolution of the bioethical research field now notice a new trend towards the inclusion of data science methods for the treatment of ethical research questions. This new research domain of “digital bioethics” encompasses both studies replacing (or complementing) socio‐empirical research on bioethical topics (“empirical digital bioethics”) and argumentative (...) approaches towards normative questions in the healthcare domain (“argumentative digital bioethics”). This article draws on insights taken from the debate on the “empirical turn” for sounding out perspectives for the newly developing field of “digital bioethics.” We particularly discuss the disciplinary boundaries, chances and challenges, and potentially undesirable developments of the research field. The article closes with concrete suggestions on which debates need to be initiated and which measures need to be taken so that the path forward of “digital bioethics” will be a scientific success. (shrink)

Informed consent represents a cornerstone of the endeavours to make health care research ethically acceptable. Based on experience of qualitative research on power dynamics in nursing care in acute psychiatry, we show that the requirement for informed consent may be practised in formalistic ways that legitimize the researcher's activities without taking the patient's changing perception of the situation sufficiently into account. The presentation of three patient case studies illustrates a diversity of issues that the researcher must consider in each situation. (...) We argue for the necessity of researchers to base their judgement on a complex set of competencies. Consciousness of research ethics must be combined with knowledge of the challenges involved in research methodology in qualitative research and familiarity with the therapeutic arena in which the research is being conducted. The article shows that the alternative solution is not simple but must emphasize the researcher's ability to doubt and be based on an awareness of the researcher's fallibility. (shrink)

Volume 19, Issue 5, May 2019, Page 31-33.

Henrich Steffens (1773-1845) war einer der frühen politischen Professoren Deutschlands. Er war Verfechter der souveränen Wissenschaft, Fürsprecher der individuellen Pädagogik, Gegner des ideologischen Turnens Friedrich Ludwig Jahns und Verteidiger einer natürlichen Nationsbildung.

. A space for ‘who’ – a culture of ‘two’: speculations related to an ‘in-between knowledge’. Ethics and Education: Vol. 7, Creating spaces, pp. 251-260. doi: 10.1080/17449642.2013.767084.

Bioethics has developed approaches to address ethical issues in health care, similar to how technology ethics provides guidelines for ethical research on artificial intelligence, big data, and robotic applications. As these digital technologies are increasingly used in medicine, health care and public health, thus, it is plausible that the approaches of technology ethics have influenced bioethical research. Similar to the “empirical turn” in bioethics, which led to intense debates about appropriate moral theories, ethical frameworks and meta-ethics due to the increased (...) use of empirical methodologies from social sciences, the proliferation of health-related subtypes of technology ethics might have a comparable impact on current bioethical research. This systematic journal review analyses the reporting of ethical frameworks and non-empirical methods in argument-based research articles on digital technologies in medicine, health care and public health that have been published in high-impact bioethics journals. We focus on articles reporting non-empirical research in original contributions. Our aim is to describe currently used methods for the ethical analysis of ethical issues regarding the application of digital technologies in medicine, health care and public health. We confine our analysis to non-empirical methods because empirical methods have been well-researched elsewhere. Finally, we discuss our findings against the background of established methods for health technology assessment, the lack of a typology for non-empirical methods as well as conceptual and methodical change in bioethics. Our descriptive results may serve as a starting point for reflecting on whether current ethical frameworks and non-empirical methods are appropriate to research ethical issues deriving from the application of digital technologies in medicine, health care and public health. (shrink)

In the debate around ecological democracy, a pivotal point of contention has long been the question why democracy should actually be expected, as some claim, to deliver (more) ecological outcomes. This point is empirical as well as conceptual: it is difficult to conceive why voters would support any policies that – as is often (perceived to be) the case with environmental legislation – would leave them worse off; whilst democracy conceptually must remain open to all outcomes rather than being tied (...) to any particular agenda ex ante. Yet both empirically and conceptually, the nature and extent of this key puzzle has always hinged on the particular definitions used. This paper reconsiders the link between democracy and ecological sustainability from a cultural angle: I argue that conceiving of both sustainability and democratisation as essentially cultural transformations resolves the puzzle and thus makes a renewed case for ecological democracy. Only as cultural processes – the creation of new meanings of sustainable prosperity in people's everyday lives, and a culturally rather than institutionally based form of democratisation – can these transformations be deep-seated rather than superficial, and thus self-perpetuating rather than merely enforced. (shrink)