We are grateful for the thoughtful replies to our article. 1 We are especially encouraged that all respondents agree that it is of value to develop a theoretical framework which helps to study how clinical ethics support services (CESS) induce individual and organisational learning. We have focused on the relations between moral case deliberation (MCD), organisational learning and quality improvement from a predominantly sociological perspective. The goal of our theoretical framework was to establish hypotheses which allow for empirical evaluation of (...) the relation between CESS and quality of care. Two major concerns seem to underly the commentaries: the framework (1) lacks a normative standard which allows for ethical justification of the outcome of repeated MCD, 2 and (2) the focus on morisprudence does not sufficiently emphasise the need for ‘structured, consistent, and facilitated processes for fair and robust moral case deliberation’. 3 In other words, it... (shrink)

Kolbe and de Melo-Martin (2023) provide a much needed reflection on the methods by which we measure moral distress. Their analysis, however, gives off the impression that the measures of moral dist...

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ (...) and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)

There is a claim that clinical ethics support services (CESS) improve healthcare quality within healthcare organisations. However, there is lack of strong evidence supporting this claim. Rather, the current focus is on the quality of CESS themselves or on individual learning outcomes. In response, this article proposes a theoretical framework leading to empirical hypotheses that describe the relationship between a specific type of CESS, moral case deliberation and the quality of care at the organisational level. We combine insights from the (...) literature on CESS, organisational learning and quality improvement and argue that moral case deliberation causes healthcare professionals to acquire practical wisdom. At the organisational level, where improving quality is a continuous and collective endeavour, this practical wisdom can be aggregated into morisprudence, which is an ongoing formulation of moral judgements across cases encountered within the organisation. Focusing on the development of morisprudence enables refined scrutinisation of CESS-related quality claims. (shrink)

In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned (...) afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. (shrink)

In Europe a process of harmonisation of standards and regulations on genetic testing has started. Public discussion and consultation are recommended, but it is not clear in every European country how the decision making process as regards the further introduction of genetic testing services should be formed. In this paper the usefulness and importance of an overseeing body for genetic screening and testing is founded on four lines of reasoning: analysis of the role of value judgments in the use of (...) the concept of abnormality; a balancing of potential benefits for all parties involved; a balancing of potential disadvantages, and the greater availability of commercial genetic tests in the future. It is further argued that such an overseeing body has advantages for all the interested parties. (shrink)

Powerful ultrastructural tools are providing new insights into neuronal circuits, revealing a wealth of anatomically‐defined synaptic connections. These wiring diagrams are incomplete, however, because functional connectivity is actively shaped by neuromodulators that modify neuronal dynamics, excitability, and synaptic function. Studies of defined neural circuits in crustaceans, C. elegans, Drosophila, and the vertebrate retina have revealed the ability of modulators and sensory context to reconfigure information processing by changing the composition and activity of functional circuits. Each ultrastructural connectivity map encodes multiple (...) circuits, some of which are active and some of which are latent at any given time. (shrink)

ABSTRACT In genomic research the ideal standard of free, informed, prior and explicit consent is sometimes difficult to apply. This has raised concern that important genomic research will be restricted. Different consent procedures have therefore been proposed. This paper explicitly examines the question how, in genomic research, the principles of solidarity and justice can be used to justify forms of diminished individual control over personal data and bio‐samples. After a discussion of the notions of solidarity and justice and how they (...) can be related to health care and genomic research, we examine how and in which situations these notions can form a strong moral basis for demanding certain financial sacrifices. Then we examine when these principles can justify consent procedures which diverge from the ideal standard. Because much genomic research is not expected to lead to immediate (clinical) benefits we also discuss the question of whether we can be obliged to make any sacrifices for future (not yet existing) patients. We conclude with the formulation of a number of conditions that have to be met before autonomy sacrifices can be reasonably demanded in genomic research. (shrink)

During the last decade a “technical” approach has become increasingly influential in health care priority setting. The various country reports illustrate, however, that non-technical considerations cannot be avoided. As they often remain implicit in health care package decisions, this paper aims to make these normative judgements an explicit part of the procedure. More specifically, it aims to integrate different models of distributive justice as well as the principle of solidarity in four different phases of a decision-making procedure, and to identify (...) important moral choices which present themselves. First four important justice models are discussed, then a justification is given for their inclusion in a four-step decision making procedure. This is followed by a discussion of different justice and solidarity problems—with their inherent conceptual difficulties in each of these stages. The paper concludes with a summary of the major moral choices that are to be made in health care package decisions. (shrink)

In decisions about inclusion (or exclusion) of health care services in the benefit package, different interpretations of notions like health, health risk, disease, quality of life or necessary care often remain implicit. Yet they can lead to different benefit package decisions. After a brief discussion of these concepts in definitions of the goals of medicine, the various value-judgements implicit in interpretations of key notions in health care are analysed and conclusions are drawn with regard to the composition of decision making (...) bodies at various levels. It is further argued that such a body needs to discuss the various interpretations of key-notions explicitly in the various phases of a priority-setting procedure so that more consistent choices can be made in health care priority setting. (shrink)

This paper explores one organisation’s journey into non-financial reporting, initially motivated by a crisis in public confidence that threatened the organisation’s legitimacy to the present with the organisation embracing integrated reporting. The organisation’s journey is framed through a legitimation lens and is illustrated by aligning internal reflections with external outputs guided by predominant paradigms of good practice, such as the GRI guidelines and more recently integrated reporting 〈IR〉. We find that the organisation’s relationship with external guidelines has evolved from pragmatic (...) adoption as a means of seeking external legitimation to the present position where those that prepare external reports are informed by the organisation’s strategic positioning and not constrained by the promulgation of voluntary guidelines. From the case study, we suggest that the International Integrated Reporting Council may face two hurdles: First, organisations may define social norms based on a broader definition of stakeholders than the definition currently published by the IIRC. The second hurdle is to convince report preparers that adopting integrated reporting 〈IR〉 will positively impact on capital flows. (shrink)

This paper discusses the problematic and sometimes implicit nature of some central notions and criteria used in debates about inclusion (or exclusion) of health care services in the health care benefit package. An analysis of discussions about four health care services—lungtransplantation, statins, (sildenafil (viagra) and rivastigmine—illustrates a case-by-case approach and inconsistent use of criteria, which present a challenge to develop a decision-making procedure in which important criteria or central notions can be discussed explicitly.

The reign of paper files would seem to be over once files are reduced to the status of icons on computer screens, but Vismann's book, which examines the impact of the file on Western institutions throughout history, shows how the creation of order in medieval and early modern administrations makes its returns in computer architecture.

In genomic research the ideal standard of free, informed, prior, and explicit consent is believed to restrict important research studies. For certain types of genomic research other forms of consent are therefore proposed which are ethically justified by an appeal to the common good. This notion is often used in a general sense and this forms a weak basis for the use of weaker forms of consent. Here we examine how the notion of the common good can be related to (...) individual health, health care, and genomic research and we use this analysis to propose more precise criteria to justify forms of consent which diverge from the ideal standard. (shrink)

Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for β-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies (...) have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of β-thalassaemia, and have generated a number of unresolved incongruities. (shrink)

While generally accepted as an interpretive theory, Bull’s emblematic text demonstrates strong structural characteristics. Subsequent attributions move between the interpretive or ‘reflexive’ and t...

Baselitz is one of the most important artists of today. His works can be found in major museums around the world. For over 30 years, photographer Benjamin Katz has been documenting Baselitz at work in different studios. This volume now captures Baselitz's exceptional life at work and at home. Benjamin Katz is famous for his photographic portraits of artists. Among his previous subjects are Gerhard Richter, Joseph Beuys, Sigmar Polke, Rosemarie Trockel, and Martin Kippenberger. Because Katz is friends with most (...) of the artists, he is able to capture them when they are completely at ease. But, as he explains in this book, he prefers to photograph people while they are in the process of doing something. Katz shows Baselitz with paintbrush and hammer, and dog and cigar - the close relationship between the two artists is almost palpable. The photographs are the result of a friendship in an artistic world that they have been sharing for many decades. Cornelia Gockel's essay discusses Katz's unique, new window on the world of Georg Baselitz. (shrink)

The biotechnology patent debates have revealed deep moral concerns about basic genetics research, RD and specific biotechnological products, concerns that are seldom taken into consideration in Technology Assessment. In this paper important moral concerns are examined which appear at the various stages of development of a specific genetic product: a predictive genetic test. The purpose is to illustrate the need for a more contextual approach in technology assessment, which integrates the various forms of interaction between bio-technology and society or societal (...) segments. Such an approach will generate greater insight in the moral issues at all stages of a products life-cycle and this will facilitate decision-making on the morality of a specific biotechnological product. (shrink)

Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private (...) sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out. (shrink)

: The gene patenting debate, which proved to be a focal point for divergent moral concerns about recent developments in genome research and biotechnology, has revealed that the moral status of DNA is not clear. One of the arguments used to stop undesirable developments was that DNA possesses a unique status, which renders it unfit for patenting. This paper investigates the allegedly unique (moral) status of genetic material and the information it holds from different perspectives. Several properties of DNA prove (...) to be unique. We examine the relevance of these for patentability of genes and conclude that only the unique symbolic meaning of DNA is a relevant factor, which should be taken into account but weighed against other interests involved. (shrink)

This paper explores usage of the concept ofabnormality in medical genetics and proposesdirectives for more careful usage of this concept.The conceptual difficulties are first explored, thena model is developed to assess actual usage, followedby analysis of a sample of genetic textbooks andgenetics literature. It appears that fact andvaluation are often intermingled, that referencestandards used to define 'genetic abnormalities' areoften not clear and that the concept of abnormality isoften used independent of the degree of certainty withwhich the altered genetype develops into (...) a (seriously)harmful phenotype. On the basis of these findings itis argued that more restraint and more careful use ofthe concept of genetic abnormality of medical geneticsis appropriate as well as more agreement on the use ofreference standards. (shrink)

In recent debates about inequality, many have pointed to the predominant position of the finance. This article highlights that structural power, not lobbying resources, are key to explaining variations across countries. It examines finance-government negotiations over national bank rescue schemes during the recent financial crisis. Given the structural power of finance, the variation in bank bailouts across countries cannot be explained by lobbying differences. Instead of observing organized interest intermediation, we can see that disorganization was crucial for the financial industry (...) to get off the hook and let the government carry the burden of stabilizing the economy. Put differently, structural power is strongest when finance remains collectively inactive. In contrast to traditional accounts of the lobbying influence of finance, the comparison highlights that the lack of organization can have crucial redistributive consequences. (shrink)

The following text provides a conceptual and theoretical introduction to a collection of essays written by members of the multidisciplinary network of scholars, artists and cultural producers named ‘Poetics of Resistance’, which seeks to analyse and encourage discussion of the relationships between creativity, culture and political resistance, in the context of neoliberal globalization. The introduction also provides a critical glossary of a set of loosely interlinking keywords, following Raymond Williams, that mark points of encounter and departure between the approaches of (...) the various authors (not to be confused with the list of keywords used to index each article). Rather than presenting a completed research project, this issue serves as a basis for continuing collaborative research and dialogue in the field, and invites readers to join in the ongoing debate. The contributors to this issue are Paulina Aroch Fugellie, Burghard Baltrusch, Arturo Casas, María do Cebreiro Rábade Villar, Roberto Echavarren, Marcos Giadas Conde, Cornelia Gräbner, Nathalia Jabur, Thomas Muhr and David Wood. (shrink)

First published in 2010, Cornelia Vismann’s article has already attained the status of a classic. In a formulation inspired by linguistic theory, the author argues that the relation between cultural techniques and media can be understood in analogy to grammatical operations. Thus, cultural techniques define the agency of media and execute the procedural rules which the latter set in place. Together, they articulate a critique of subjectivity and sovereignty that proceeds by re-examining the notion of ‘culture’ via its agricultural (...) origins to the current moment when the ‘preservation of cultural techniques’ has entered legal and academic discourse. Ultimately, despite their apparent separation from praxis, cultural techniques continue to proliferate through axes of substitution and displacement. (shrink)

This article contests the popular assumption that literature is ever less politically relevant. Quite the contrary is the case: literature and literary language becomes increasingly important for the alter-globalization movement and for the notion that ‘another world is possible.’ The work of four authors—Manu Chao, Eduardo Galeano, Subcomandante Marcos, and José Saramago—are comparatively analysed in light of their contribution to an alternative globalism and to an alternative practice of politics. All four authors contribute from different perspectives to the literary articulation (...) of a political project. Their work shares characteristics such as the permeability of genres, the emphasis on the poetical over the narrative, a meandering structure that expresses the search for and step-by-step construction of a cultural and political alternative, and an emphasis on translation and encounter as principles of interaction with difference. (shrink)

In diesem Aufsatz mochte die Autorin den Einstieg in ein neues Forschungsfeld mit dem Namen "Affektlogik" beginnen, dessen Begrunder, Luc Ciompi, den hohen Stellenwert seiner "Hypothese" fur das interdisziplinare Gesprach von Psychologie bzw. Psychiatrie, Neurobiologie, Politik, Philosophie und -- von Ciompi ausdrucklich in diesem Zusammenhang genannt -- der Wissenschaftstheorie entdeckt. (edited).

Dieses Buch schreibt Theorie. Es entwirft am Beispiel von Wilhelm Raabes Erzähltexten zwischen 1856 und 1902 den Grundriss einer ontologischen Narratologie, der über seinen historischen Gegen-stand hinaus systematische Gültigkeit beansprucht. Den Ausgangspunkt bildet die Frage: Was ist Welt?

The goal of the article is to offer a framework against which relations between gesture and sign can be systematically explored beyond the current literature. It does so by a) reconstructing the history of the discussion in the field of gesture studies, focusing on three leading positions (Kendon, McNeill, Goldin-Meadow); and b) by formulating a position to illustrate how this can be achieved. The paper concludes by emphasizing the need for systematic cross-linguistic research on multimodal use of language in its (...) signed and spoken forms. (shrink)