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)

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)

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)

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

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)

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)

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)

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)

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)

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)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

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.

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

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant‐centric ePHR responses. This paper highlights their (...) importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe. (shrink)

Climate change is an existential risk reinforced by ordinary actions in afuent societies—often silently present in comfortable and enjoyable habits. This silence is sometimes broken, presenting itself as a nagging reminder of how our habits fuel a catastrophe. As a case in point, global warming has created a state of urgency among wine makers in Spain, as the alcohol level has risen to a point where it jeopardises wine quality and thereby Spanish viticulture. Eforts are currently being made to solve (...) this problem technologically by developing (non-GMO) strains of yeast that produce less alcohol. If successful, this could help save Spanish viticulture. This kind of technological solution is routinely criticised for ofering simplistic “techno-fx” solutions to solve complex societal problems. However, it is not clear what features are criticised by the notion of techno-fx and hence how to avoid this criticism. In our interpretation, the techno-fx notion is not exclusively used as a dismissive term. The notion points to a general virtue of engineering: to create technological solutions that work silently in the background. This asset of technological solutions might sometimes be problematic and sometimes not. Hence, it needs to be analysed case-by-case by paying attention to the moral relevance of the hidden implications of the technology and of the unrefective actions and habits that they facilitate. Such moral analysis will in turn inform strategies for foregrounding this technology to counteract silencing. We discuss what this means in the case of modifying yeast as a viticultural climate resilience strategy. (shrink)

The worldwide decline in bees and other pollinating insects is a threat to biodiversity and food security, and urgent action must be taken to stop and then reverse this decline. An established cause of the insect decline is the use of harmful pesticides in agriculture. This case study focuses on the use of pesticides in Norwegian apple production and considers who among farmers, consumers and public authorities is most responsible for protecting bees against harmful pesticides. The extent to which these (...) three different groups consider themselves responsible and the degree to which they are trusted by each of the other groups are also studied. This empirical study involves both qualitative interviews with Norwegian apple farmers, consumers and public authorities and survey data from consumers and farmers. The results show that consumers consider public authorities and farmers equally responsible for protecting bees, while farmers are inclined to consider themselves more responsible. Farmers, consumers and public authorities do not consider consumers significantly responsible for protecting bees, and consumers have a high level of trust in both farmers and public authorities regarding this matter. This study also finds that a low level of consumer trust in farmers or public authorities increases consumers’ propensity to purchase organic food, suggesting that those who do not trust that enough action is adopted to protect the environment take on more individual responsibility. This paper adds to the existing literature concerning the allocation of responsibility for environmental outcomes, with empirical evidence focusing specifically on pesticides and bees. (shrink)

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined (...) or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in (...) the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection. (shrink)

Companies have been experiencing increasing pressure from NGOs to overcome unethical and unsustainable behaviours. The purpose of this research was to study the interplay between supply chain transparency and NGO pressure. The analysis builds on the literature on supply chain transparency and institutional pressures. We conducted a time-lagged, multi-level regression analysis that included data from 270 fashion companies over a 5-year period to investigate the effect of NGO pressure on transparency and vice versa. The results revealed that companies with higher (...) levels of transparency are more likely to be pressured by NGOs than less transparent companies. Furthermore, our findings show that, depending on the number of campaigns, NGO power and communication about campaigns, NGO pressure can either stimulate corporate transparency or turn into a negative effect that leads to lower levels of transparency. (shrink)

Standard tools used in societal risk management such as probabilistic risk analysis or cost–benefit analysis typically define risks in terms of only probabilities and consequences and assume a utilitarian approach to ethics that aims to maximize expected utility. The philosopher Carl F. Cranor has argued against this view by devising a list of plausible aspects of the acceptability of risks that points towards a non-consequentialist ethical theory of societal risk management. This paper revisits Cranor’s list to argue that the alternative (...) ethical theory responsibility-catering prioritarianism can accommodate the aspects identified by Cranor and that the elements in the list can be used to inform the details of how to view risks within this theory. An approach towards operationalizing the theory is proposed based on a prioritarian social welfare function that operates on responsibility-adjusted utilities. A responsibility-catering prioritarian ethical approach towards managing risks is a promising alternative to standard tools such as cost–benefit analysis. (shrink)

A model of ZFC is constructed in which the distributivity cardinal h is 2 ℵ 0 = ℵ 2 , and in which there are no ω 2 -towers in [ω] ω . As an immediate corollary, it follows that any base-matrix tree in this model has no cofinal branches. The model is constructed via a form of iterated Mathias forcing, in which a mixture of finite and countable supports is used.

ABSTRACTThe concept of need is often proposed as providing an additional or alternative criterion to cost‐effectiveness in making allocation decisions in health care. If it is to be of practical value it must be sufficiently precisely characterized to be useful to decision makers. This will require both an account of how degree of need for an intervention is to be determined and a prioritization rule that clarifies how degree of need and the cost of the intervention interact in determining the (...) relative priority of the intervention. Three common features of health care interventions must be accommodated in a comprehensive theory of need: the probabilistic nature of prognosis ; the time course of effects; and the fact that the most effective treatments often combine more than one intervention. These common features are problematic for the concept of need. We outline various approaches to prioritization on the basis of need and argue that some approaches are more promising than others. (shrink)

Studying teaching behavior in controlled conditions is difficult. It seems intuitive that a human learner might have trouble reliably recreating response patterns over and over in interaction. A robot would be the perfect tool to study teaching behavior because its actions can be well controlled and described. However, due to the interactive nature of teaching, developing such a robot is not an easy task. As we will show in this review, respective studies require certain robot appearances and behaviors. These mainly (...) should induce teaching behavior in humans, be interactive, match the study design, and be realizable in terms of effort. We discuss how remote controlling of the robot or simulating robot capabilities is used as an option. With this review, we introduce the field of research on studying human teaching behavior with robots as a tool in the experimental design. We will provide a structured overview of existing work, and identify main challenges of employing robots in such studies. (shrink)

The International Competition on Computational Models of Argumentation (ICCMA) focuses on reasoning tasks in abstract argumentation frameworks. Submitted solvers are tested on a selected collection of benchmark instances, including artificially generated argumentation frameworks and some frameworks formalizing real-world problems. This paper presents the novelties introduced in the organization of the Third (2019) and Fourth (2021) editions of the competition. In particular, we proposed new tracks to competitors, one dedicated to dynamic solvers (i.e., solvers that incrementally compute solutions of frameworks obtained (...) by incrementally modifying original ones) in ICCMA’19 and one dedicated to approximate algorithms in ICCMA’21. From the analysis of the results, we noticed that i) dynamic recomputation of solutions leads to significant performance improvements, ii) approximation provides much faster results with satisfactory accuracy, and iii) classical solvers improved with respect to previous editions, thus revealing advancement in state of the art. (shrink)

Danto, A. The artworld.--Dickie, G. What is art?--Margolis, J. Works of art are physically embodied and culturally emergent entities.--Kjørup, S. Art broadly and wholly conceived.--Meyer, L. B. Forgery and the anthropology of art.--Brunius, T. Theory and ideologies in aesthetics.--Tilghman, B. R. Artistic puzzlement.--Binkley, T. Deciding about art.--Alexander, H. G. On defining in aesthetics.--Iseminger, G. Appreciation, the artworld, and the aesthetic.--Glickman, J. Creativity in the arts.--Sclafani, R. The theory of art.--Lyas, C. Danto and Dickie on art.--Beardsley, M. C. Is art essentially (...) institutional? (shrink)

Latent variable modeling has revealed important conundrums in the DSM classification system. We agree that the network perspective has potential to inspire new insights and resolve some of these conundrums. We note, however, that alone it cannot really help us understand etiology. Etiology, not comorbidity, is the fundamental question.

Cognitive models propose that both, negative interpretations of ambiguous social situations and ruminative thoughts about social events contribute to the maintenance of social anxiety disorder. It has further been postulated that ruminative thoughts fuel biased negative interpretations, however, evidence is rare. The present study used a multi-method approach to assess ruminative processing following a social interaction and negative interpretation bias in a student sample screened for high and low social anxiety. Results support the hypothesis that group differences in negative interpretations (...) of ambiguous social situations in HSAs vs. LSAs are mediated by higher levels of post-event processing assessed in the questionnaire. Exploratory analyses highlight the potential role of comorbid depressive symptoms. The current findings help to advance the understanding of the association between two cognitive processes involved in social anxiety and stress the importance of ruminative post-event processing. (shrink)

The aim of this article is to inquire into today's social pathologies, i.e. the negative consequences of the developmental processes of society. In a dialogue with Axel Honneth, the article asserts that a shift has occurred in individualization, a shift that implies a fundamental change in social pathologies: Social pathologies no longer derive from social barriers inhibiting self‐realization but from self‐realization itself. As a consequence, philosophy of education, rather than sociology, appears to be the relevant field of study. The article (...) develops a social‐analytical perspective on ‘sickness in self‐Bildung’, which is conceived as a ‘refusal to transcend oneself into sociality’, and offers interpretations of present pathologies such as depression, anorexia, populist freedom of speech, and demonic rage. (shrink)

The epistemological soundness of controlled clinical trials is questioned. It is argued that the real effect of therapies cannot be determined by such experiments because there is a significant interaction between the placebo effect and real effect created by the individual therapist and treatment situation which, however, is neglected in controlled clinical trials. This critical standpoint is supported by several pharmacological examples.

Teachers frequently face ethical problems in their everyday practice – ranging from pedagogical choices affecting their pupils to pressing conflicts that need to be solved – and they are expected to respond to such problems in a professional manner. Given the centrality of the ethical dimension to the teaching profession, an important question is how teachers tend to approach such problems. While some studies have been carried out regarding how teachers in particular approach ethical problems, there are interesting studies revealing (...) how people in general tend to respond ethically to situations involving ethical aspects that evoke strong emotional reactions. Aiming to fill parts of this gap, the present paper is based on a survey of Swedish teacher students and religious education (RE) teachers for which we have borrowed two examples from such general studies (carried out by Jonathan Haidt among others). These examples were chosen on the basis that one of them clearly represent a social taboo in a Swedish context while the other one does not. Letting the teacher students and RE teachers respond to both examples give us an indication of whether there is any significant difference in their approach to an example evoking a strong emotional reaction as opposed to a more neutral one. It is clear from our survey that there is such a difference: the respondents generally make rationally motivated judgments when confronted with the neutral example, while most of them seem to rely on gut feeling in the more provoking case. If these results can be taken as an indication of how teacher students and teachers tend to respond to real life situations, a provoking or emotionally laden context is likely to enhance the risk of making ethical choices which are not based on rational reasoning. We argue that these results emphasize the importance for teacher students as well as already practicing teachers to study, and cultivate the ability for, moral reasoning. (shrink)