A adoção de um catálogo constitucional de direitos e o fortalecimento do judicial review, trouxeram como consequência a judicialização da política em inúmeras democracias, onde se verifica uma expansão da atuação do Poder Judiciário em detrimento das esferas representativas do Estado. Neste contexto, tem se observado em países do Sul Global, o emprego de novos mecanismos procedimentais em casos que envolvem a violação contínua e generalizada de direitos fundamentais, de alguns grupos menos favorecidos, decorrente de bloqueios políticos e institucionais, denominados (...) de “litígios estruturais”. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised all four (...) government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (shrink)

Although emotions play a crucial role in understanding and encouraging sustainable behavior and decision-making, many open questions currently remain unanswered. In this review, we advance three broad areas of particular theoretical and applied importance that affective science and emotion researchers could benefit from engaging with: (1) “ sustainable emotions” or empirically testing the possibility of positive reinforcing feedback loops between anticipatory and experienced emotions following the adoption of sustainable behaviors, (2) “ non- Western emotions” or exploring the extent to which (...) people's understanding and experience of climate-relevant emotions differs across non-WEIRD populations, and (3) “ impactful emotions” or the need to carefully differentiate the conceptual and empirical role of emotions in encouraging the adoption of low-impact (e.g., recycling) versus high-impact (e.g., flying less) environmental behaviors. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

During the past decennium, one of the main issues discussed in research ethics has been focused on the care that should be provided to the control group in a clinical trial. This discussion is also called the standard of care debate . Current international research ethics guidelines contain a wide variety of standards for the standard of care—including the provision of the highest attainable, the best available, the best current, a proven , and an established effective treatment. In this article, (...) we systematically review the currently used standards and argue that none of the current standards is adequate to serve as a universal standard for the standard of care. Alex London has made a substantial proposal for a universal standard, but universally adopting his standard is problematic. In this article, we propose a revised version of London's standard. (shrink)

In academic research, many attempts have been undertaken to legitimize corporate community involvement by showing a business case for it. However, much less attention has been devoted to building understanding about the actual dynamics and challenges of managing CCI in the business context. As an alternative to existing predominantly static and top-down approaches, this paper introduces a social movement framework for analyzing CCI management. Based on the analysis of qualitative case study data, we argue that the active role of employees (...) pressuring for CCI policies and practices, as well as the organization audience responses to their efforts, are at the core of the challenges involved in managing CCI. These challenges also pose limits to how far CCI can be extended to a “business as usual” activity. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

The precautionary principle is often invoked in relation to pregnant women and may be one of the underlying reasons for their continuous underrepresentation in clinical research. The principle is appealing, because potential fetal harm as a result of research participation is considered to be serious and irreversible. In our paper, we explore through conceptual analysis whether and if so how the precautionary principle should apply to pregnant women. We argue that the principle is a decision-making strategy underlying risk-benefit decisions in (...) clinical research, which can be applied to pregnant women. However, the current application is a strong one, leading to the promotion of absolute exclusion or, less often, absolute inclusion of pregnant women. In order to change this paralyzing situation, a shift toward weak precautionary thinking is necessary. Instead of automatic extreme precaution, a balance will be found between harms and potential benefits of including pregnant women in clinical research. (shrink)

As early as 2002, CIOMS stated that pregnant women should be presumed eligible for participation in research. Despite this position and calls of other well‐recognized organizations, the health needs of pregnant women in research remain grossly under‐researched. Although the presumption of eligibility remains unchanged, the revision of the 2002 CIOMS International ethical guidelines for biomedical research involving human subjects involved a substantive rewrite of the guidance on research with pregnant women and related guidelines, such as those on fair inclusion and (...) vulnerability. However, close reading of the guidelines reveals morally relevant different approaches to fair inclusion of pregnant women and other under‐represented groups, such as children and incompetents. Where CIOMS sets out that children and adolescents must be included unless a good scientific reason justifies their exclusion, no such claim of having to justify exclusion appears in the guideline on pregnant women. Instead, CIOMS claims that research relevant to pregnant women’s health needs must be promoted. This paper analyses how and to what extent the guideline on pregnant women differs from other guidance on fair inclusion in the document. Accordingly, the paper evaluates to what extent the current phrasing may contribute to fair inclusion of pregnant women in research. We will conclude that a system change towards a learning health system is essential to break down the status quo of knowledge generation in the field of medication use during pregnancy and argue that the CIOMS guidelines allow for this system change. (shrink)

Spatial relations are central to geometrical thinking. With respect to the classical elementary geometry of Euclid’s Elements, a distinction between co-exact, or qualitative, and exact, or metric, spatial relations has recently been advanced as fundamental. We tested the universality of intuitions of these relations in a group of Senegalese and Dutch participants. Participants performed an odd-one-out task with stimuli that in all but one case display a particular spatial relation between geometric objects. As the exact/co-exact distinction is closely related to (...) Kosslyn’s categorical/coordinate distinction, a set of stimuli for testing all four types was used. Results suggest that intuitions of all spatial relations tested are universal. Yet, culture has an important effect on performance: Dutch participants outperformed Senegalese participants and stimulus layouts affect the categorical and coordinate processing in different ways for the two groups. Differences in level of education within the Senegalese participants did not affect performance. (shrink)

Summary In 1874, the Dutch chemist and Nobel prizewinner Jacobus Henricus van 't Hoff (1852?1911) laid the foundations for stereochemistry with a publication in which he openly suggested that molecules were real physical entities with a three-dimensional structure. He visualized this new spatial concept with illustrations, but also with the help of small cardboard molecular models, which he made himself. Some of these models have survived the ravages of time and are among the oldest molecular models in the world still (...) in existence. What is more, they are the first material models of a three-dimensional molecular structure ever made. This article describes the surviving Van 't Hoff models, kept in Museum Boerhaave in Leiden and in the Deutsches Museum in Munich. Special attention is paid to the use of these models and the specific purposes they served. A closer examination of the models and their context reveals that they had an essential part to play in the early development and spread of Van 't Hoff's stereochemistry theory: he put his molecular models not only to versatile use as didactic tools, scientific instruments, and precursors to experimental proof, but also as devices to persuade other scientists of the usefulness of his theory. (shrink)

This article reports on a survey of the moral problems that Dutch nurses experience during their everyday practice. A questionnaire was developed, based on published literature, panel discussions, in-depth interviews and participation observations. The instrument was tested in a pilot study and proved to be useful. A total of 2122 questionnaires were sent to 91 institutions in seven different health care settings. The results showed that nurses were not experiencing important societal issues such as abortion and euthanasia as morally the (...) most problematic, but rather situations such as verbally aggressive behaviour of colleagues towards patients, keeping silent about errors, and medical treatment given against the wishes of patients. Moral problems occurred especially when nurses experienced feelings of powerlessness with regard to the well-being of patients. Moreover, these moral problems proved to be related to institutional organization, leadership, and collaboration with colleagues and other disciplines. Nurses appeared to have a limited awareness of the moral dimensions of their practice. (shrink)

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of novel oral (...) anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research. (shrink)

The Western Tradition has long struggled to define and understand evil, yet definitive answers continue to elude us. So, too, the role of evil in Goethe's Faust remains problematic. With the help of Mephistopheles, Faust acquires a forbidden,,knowledge of good and evil“, evoking the biblical story of the Fall. This study uncovers important layers of meaning in that story and reveals its special and unrecognized significance for Faust.

It is often argued that clinical research should not violate the Kantian principle that people must not be used merely as a means for the purposes of others. At first sight, the practice of clinical research itself, however, seems to violate precisely this principle: clinical research is often beneficial to future people rather than to participants; even if participants benefit, all things considered, they are exposed to discomforts which are absent both in regular care for their diseases and in other (...) areas of daily life. Therefore, in this paper we will consider whether people are used merely as a means by being enrolled in clinical research. On the basis of recent studies of Kantian scholars we will argue that clinical research is compatible with the Kantian principle if the conditions of possible consent and end-sharing have been met. Participants are not used merely as a means if they have sufficient reasons to consent to being enrolled in clinical research and can share the ends of the researchers who use them. Moreover, we will claim that even if people are used merely as a means by participating in clinical research, it may not always be morally wrong to use them in this way. (shrink)

This essay attempts to develop a psychologically informed semantics of perception reports, whose predictions match with the linguistic data. As suggested by the quotation from Miller and Johnson-Laird, we take a hallmark of perception to be its fallible nature; the resulting semantics thus necessarily differs from situation semantics. On the psychological side, our main inspiration is Marr's (1982) theory of vision, which can easily accomodate fallible perception. In Marr's theory, vision is a multi-layered process. The different layers have filters of (...) different gradation, which makes vision at each of them approximate. On the logical side, our task is therefore twofold - to formalise the layers and the ways in which they may refine each other, and. (shrink)

Route memory is frequently assessed in virtual environments. These environments can be presented in a fully controlled manner and are easy to use. Yet they lack the physical involvement that participants have when navigating real environments. For some aspects of route memory this may result in reduced performance in virtual environments. We assessed route memory performance in four different environments: real, virtual, virtual with directional information (compass), and hybrid. In the hybrid environment, participants walked the route outside on an open (...) field, while all route information (i.e., path, landmarks) was shown simultaneously on a handheld tablet computer. Results indicate that performance in the real life environment was better than in the virtual conditions for tasks relying on survey knowledge, like pointing to start and end point, and map drawing. Performance in the hybrid condition however, hardly differed from real life performance. Performance in the virtual environment did not benefit from directional information. Given these findings, the hybrid condition may offer the best of both worlds: the performance level is comparable to that of real life for route memory, yet it offers full control of visual input during route learning. (shrink)

Often called the first of its kind, Frankenstein paved the way for science fiction writing. Its depiction of a then impossible scientific feat has in our time become possible and is essentially recognizable in what we now refer to as bioengineering, biomedicine, or biotechnology. The fiction of Frankenstein has as it were given way to scientific fact. Of more importance, however, is the challenge Mary Shelley’s novel presents to the ostensibly high-minded and well-intentioned hopes and promises of the scientist/technologist. Finally, (...) the fictional character, Victor Frankenstein, has come to serve as the poster child and whipping boy for all scientific and technological irresponsibility, so much so that thanks to him we are able to free ourselves and our scientists from any real responsibility, since none of us ever would or could be as monstrous as Frankenstein. (shrink)

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown (...) that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life. (shrink)

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. (...) Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

Synthetic biology is an emerging technology that asks for inclusive reflection on how people frame the field. To unravel how we can facilitate such reflection, this study evaluates the Frame Reflection Lab. Building upon playfulness design principles, the FRL comprises a workshop with video-narratives and co-creative group exercises. We studied how the FRL facilitated frame reflection by organizing workshops with various student groups. Analysis of 12 group conversations and 158 mini-exit surveys yielded patterns in first-order reflection as well as patterns (...) in second-order reflection. Also patterns in participants’ framing of synthetic biology could be induced; participants’ viewpoints converged to some extent, yet with openness to individual viewpoint differences. Although the FRL method fortified the reflection processes of participants, the narratives and the workshop’s flexible format could inhibit the reflection too. Therefore, we advise designers of future frame reflection methods to apply stronger conversational facilitation and narratives of slightly mysterious yet identifiable narrators, in case e.g. video-narratives are created and used to scaffold the reflection process. Nevertheless, we argue that the use of a playful frame reflection method like the FRL could function well as a step to precede more application-specific deliberation or decision-making on synthetic biology and as a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further responsible development of the emerging field. (shrink)

Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or (...) their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client. (shrink)