We are printing in its entirety the discussion document which sets out a code of professional conduct for nurses published by the Royal College of Nursing in November 1976 together with commentaries by the Assistant Secretary of the British Medical Association, a professor of nursing studies, student nurses and a lawyer. The image of the nurse is still that of one of Florence Nightingale's young ladies or of a member of a religious order who is wholly dedicated to caring for (...) the sick. Today, as this document and the comments upon it show, 'dedication' is still part of the motive which leads a man or woman to become a nurse but in addition, and this is where the public may be ignorant or choose to be ignorant, nursing offers a career where intellectual achievement and the satisfaction of a demanding job bring their proper financial reward and place in the professional community. We are grateful to the Royal College of Nursing for permission to publish this document. (shrink)

A traditional approach to teaching medical ethics aims to provide knowledge about ethics. This is in line with an epistemological view on ethics in which moral expertise is assumed to be located in theoretical knowledge and not in the moral experience of healthcare professionals. The aim of this paper is to present an alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics. This approach is called moral case deliberation. Within moral case deliberation, healthcare professionals (...) bring in their actual moral questions during a structured dialogue. The ethicist facilitates the learning process by using various conversation methods in order to find answers to the case and to develop moral competencies. The case deliberations are not unique events, but are a structural part of the professional training on the work floor within healthcare institutions. This article presents the underlying theory on ethics and illustrates this approach with an example of a moral case deliberation project in a Dutch psychiatric hospital. The project was evaluated using the method of responsive evaluation. This method provided us with rich information about the implementation process and effects the research process itself also lent support to the process of implementation. (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)

_Everyday Life and the Sacred_ offers gender sensitive interdisciplinary perspectives from the fields of feminist theology and religious studies on the everyday and the sacred. The volume aims to re-configure the current domain of religion and gender studies.

Background If trials of therapeutic interventions are to serve society's interests, they must be of high methodological quality and must satisfy moral commitments to human subjects. The authors set out to develop a clinical - trials compendium in which standards for the ethical treatment of human subjects are integrated with standards for research methods. Methods The authors rank-ordered the world's nations and chose the 31 with >700 active trials as of 24 July 2008. Governmental and other authoritative entities of the (...) 31 countries were searched, and 1004 English-language documents containing ethical and/or methodological standards for clinical trials were identified. The authors extracted standards from 144 of those: 50 designated as ‘core’, 39 addressing trials of invasive procedures and a 5% sample of the remainder. As the integrating framework for the standards we developed a coherent taxonomy encompassing all elements of a trial's stages. Findings Review of the 144 documents yielded nearly 15 000 discrete standards. After duplicates were removed, 5903 substantive standards remained, distributed in the taxonomy as follows: initiation, 1401 standards, 8 divisions; design, 1869 standards, 16 divisions; conduct, 1473 standards, 8 divisions; analysing and reporting results, 997 standards, four divisions; and post-trial standards, 168 standards, 5 divisions. Conclusions The overwhelming number of source documents and standards uncovered in this study was not anticipated beforehand and confirms the extraordinary complexity of the clinical trials enterprise. This taxonomy of multinational ethical and methodological standards may help trialists and overseers improve the quality of clinical trials, particularly given the globalisation of clinical research. (shrink)

The larval arms of echinoid plutei are used for locomotion and feeding. They are composed of internal calcite skeletal rods covered by an ectoderm layer bearing a ciliary band. Skeletogenesis includes an autonomous molecular differentiation program in primary mesenchyme cells (PMCs), initiated when PMCs leave the vegetal plate for the blastocoel, and a patterning of the differentiated skeletal units that requires molecular cues from the overlaying ectoderm. The arms represent a larval feature that arose in the echinoid lineage during the (...) Paleozoic and offers a subject for the study of gene co-option in the evolution of novel larval features. We isolated new molecular markers in two closely related but differently developing species, Heliocidaris tuberculata and Heliocidaris erythrogramma. We report the expression of a larval arm-associated ectoderm gene tetraspanin, as well as two new PMC markers, advillin and carbonic anhydrase. Tetraspanin localizes to the animal half of blastula stage H. tuberculata and then undergoes a restriction into the putative oral ectoderm and future location of the postoral arms, where it continues to be expressed at the leading edge of both the postoral and anterolateral arms. In H. erythrogramma, its expression initiates in the animal half of blastulae and expands over the entire ectoderm from gastrulation onward. Advillin and carbonic anhydrase are upregulated in the PMCs postgastrulation and localized to the leading edge of the growing larval arms of H. tuberculata but do not exhibit coordinated expression in H. erythrogramma larvae. The tight spatiotemporal regulation of these genes in H. tuberculata along with other ontogenetic and phylogenetic evidence suggest that pluteus arms are novel larval organs, distinguishable from the processes of skeletogenesis per se. The dissociation of expression control in H. erythrogramma suggest that coordinate gene expression in H. tuberculata evolved as part of the evolution of pluteus arms, and is not required for larval or adult development. (shrink)

The origin of marine invertebrate larvae has been an area of controversy in developmental evolution for over a century. Here, we address the question of whether a pelagic “larval” or benthic “adult” morphology originated first in metazoan lineages by testing the hypothesis that particular gene co-option patterns will be associated with the origin of feeding, indirect developing larval forms. Empirical evidence bearing on this hypothesis is derivable from gene expression studies of the sea urchin larval gut of two closely related (...) but differently developing congenerics, Heliocidaris tuberculata (feeding indirect-developing larva) and H. erythrogramma (nonfeeding direct developer), given two subsidiary hypotheses. (1) If larval gut gene expression in H. tuberculata was co-opted from an ancestral adult expression pattern, then the gut expression pattern will remain in adult H. erythrogramma despite its direct development. (2) Genes expressed in the larval gut of H. tuberculata will not have a coordinated expression pattern in H. erythrogramma larvae due to loss of a functional gut. Five structural genes expressed in the invaginating archenteron of H. tuberculata during gastrulation exhibit substantially different expression patterns in H. erythrogramma with only one remaining endoderm specific. Expression of these genes in the adult of H. erythrogramma and larval gut of H. tuberculata, but not in H. erythrogramma larval endoderm, supports the hypothesis that they first played roles in the formation of adult structures and were subsequently recruited into larval ontogeny during the origin and evolution of feeding planktotrophic deuterostome larvae. (shrink)

The star-nosed mole is aptly named. Its distinctive snout consists of 22 tendrils ringing a pair of nostrils and, from some angles, the entire setup resembles a misshapen star. The tendrils are fleshy and look a bit like fingers, and, like fingers, they have a certain dexterity. But why? Why does the mole have such a singular appendage as opposed to something more ordinary? What is the function or purpose of this bizarre structure? From the dedicated work of Ken Catania, (...) of Vanderbilt University, and colleagues, it appears that the appendage facilitates rapid handling of small prey items, making it advantageous for an organism whose diet consists of tiny invertebrates. We might therefore hazard that this feature arose evolutionarily because it conferred this benefit. But the matter is difficult to resolve, because current utility does not permit a straightforward inference of a reason for existence. -/- A correction has been published: BioScience, Volume 72, Issue 7, July 2022, Page 708. (shrink)

Objectives To investigate empirically the motivations for not consenting to DNA biobanking in a Swedish population-based study and to discuss the implications. Design Structured questionnaires and semistructured interviews. Setting A longitudinal epidemiological project (PART) ongoing since 1998 in Stockholm, Sweden. The DNA-collection wave took place during 2006–7. Participants 903 individuals completed the questionnaire (participation rate 36%) and 23 were interviewed. All individuals had participated in both non-genetic waves of the project, but refused to contribute saliva samples during the DNA-collection wave. (...) Main outcome measures Motivations behind refusing to consent to DNA biobanking, with subsequent focus on participants' explanations regarding this unwillingness. Results Public refusal to consent to DNA biobanking, as revealed by the questionnaire, was mainly explained by a lack of personal relevance of DNA contribution and feelings of discomfort related to the DNA being used for purposes other than the respective study. Interviews of individuals representing the second motivation, revealed a significant mistrust of DNA biobank studies. The underlying beliefs and attitudes were associated with concerns about integrity, privacy, suspiciousness and insecurity. However, most interviewees were supportive of genetic research per se and interpreted their mistrust in the light of distressing environmental influences. Conclusion The results suggest a need for guidelines on benefit sharing, as well as trustworthy and stable measures to maintain privacy, as a means for increasing personal relevance and trust among potential participants in genetic research. Measures taken from biobanks seem insufficient in maintaining and increasing trust, suggesting that broader societal measures should be taken. (shrink)

In recent times, daily, ordinary medical practices have incontrovertibly been developing under the condition of complexity. Complexity jeopardizes the moral core of practicing medicine: helping people, with their illnesses and suffering, in a medically competent way. Practical wisdom has been proposed as part of the solution to navigate complexity, aiming at the provision of morally good care. Practical wisdom should help practitioners to maneuver in complexity, where the presupposed linear ways of operating prove to be insufficient. However, this solution is (...) unsatisfactory, because the proposed versions of practical wisdom are too individualistic of nature, while physicians are continuously operating in varying teams, and dealing with complicated technologies and pressing structures. A second point of critique is, that these versions are theory based, and thus insufficiently attuned to the actual context of everyday medical practices. Now, our proposal is to use an approach of practical wisdom that enables medical practices to counter the complexity issue and to re-invent the moral core of medical practicing as well. This implies a practice oriented approach, as thematized by practice theory, qualitative empirical research from the inside, and abduction from actual performed practical wisdom towards an apt understanding of phronèsis. (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)

This paper explores the psychological foundations of the 'Willingness to Pay/Willingness to Accept' discrepancy. Using a qualitative approach we find that the two response modes appear to invoke different strategies for completion. An examination of the heuristics used by respondents to answer questions concerning the buying and selling of the chance to play a straightforward lottery shows that only some could be taken as supporting current theories which aim to explain the discrepancy.

During the set-up phase of an international study of genetic influences on outcomes from sepsis, we aimed to characterise potential differences in ethics approval processes and outcomes in participating European countries. Between 2005 and 2007 of the FP6-funded international Genetics Of Sepsis and Septic Shock project, we asked national coordinators to complete a structured survey of research ethic committee approval structures and processes in their countries, and linked these data to outcomes. Survey findings were reconfirmed or modified in 2017. Eighteen (...) countries participated in the study, recruiting 2257 patients from 160 ICUs. National practices differed widely in terms of composition of RECs, procedures and duration of the ethics approval process. Eight countries used a single centralised process for approval, seven required approval by an ethics committee in each participating hospital, and three required both. Outcomes of the application process differed widely between countries because of differences in national legislation, and differed within countries because of interpretation of the ethics of conducting research in patients lacking capacity. The RECs in four countries had no lay representation. The median time from submission to final decision was 1.5 months; in nine approval was received within 1 month; six took over 6 months, and in one 24 months; had all countries been able to match the most efficient approvals processes, an additional 74 months of country or institution-level recruitment would have been available. In three countries, rejection of the application by some local RECs resulted in loss of centres; and one country rejected the application outright. The potential benefits of the single application portal offered by the European Clinical Trials Regulation will not be realised without harmonisation of research ethics committee practices as well as national legislation. (shrink)

Through case studies that highlight the type of information that is seldom reported in the news, Faces of Environmental Racism exposes the type and magnitude of environmental racism, both domestic and international. The essays explore the justice of current environmental practices, asking such questions as whether cost-benefit analysis is an appropriate analytic technique and whether there are alternate routes to sustainable development in the South.

Over the past decade, Convergence Research has increasingly gained prominence as a research, development, and innovation (RDI) strategy to address grand societal challenges. However, a dearth of research-based evidence is available to aid researchers, research teams, and institutions with navigating the complexities attendant to the specifics of Convergence Research. This paper presents a multilevel research agenda that accounts for an integral understanding of Convergence Research as a complex adaptive system. Furthermore, by developing a framework that accounts for ancillary, yet essential, (...) systems associated with Convergence Research, we enrich the agenda with a literature-steeped discussion that considers how systems-based practices of collaboration, inquiry, and context interact with the processes and products of Convergence Research. Finally, we synthesize and apply insights from the reviewed literature by providing paths for empirical exploration emphasizing systems-based practices. In so doing, we delineate an extended boundary for a research stream that both clarifies and enlarges our understanding of Convergence Research as a ‘system-of-systems’. (shrink)

Through case studies that highlight the type of information that is seldom reported in the news, Faces of Environmental Racism exposes the type and magnitude of environmental racism, both domestic and international. The essays explore the justice of current environmental practices, asking such questions as whether cost-benefit analysis is an appropriate analytic technique and whether there are alternate routes to sustainable development in the South.

\noindent\textbf{Introduction} Online interventions hold great potential for Therapeutic Change Process Research (TCPR), a field that aims to relate in-therapeutic change processes to the outcomes of interventions. Online a client is treated essentially through the language their counsellor uses, therefore the verbal interaction contains many important ingredients that bring about change. TCPR faces two challenges: how to derive meaningful change processes from texts, and secondly, how to assess these complex, varied and multi-layered processes? We advocate the use text mining and multi-level (...) models (MLMs): the former offers tools and methods to discovers patterns in texts; the latter can analyse these change processes as outcomes that vary at multiple levels. \noindent\textbf{Method} We (re-)used the data from \cite{Lamers2015} because it includes outcomes and the complete online intervention for clients with mild depressive symptoms. We used text mining to obtain basic text-variables from e-mails, that we analysed through MLMs. \noindent\textbf{Results} We found that we could relate outcomes of interventions to variables containing text-information. We conclude that we can indeed bridge text mining and MLMs for TCPR as it was possible to relate text-information (obtained through text mining) to multi-levelled TCPR outcomes (using a MLM). \noindent\textbf{Discussion} Text mining can be helpful to obtain change processes, which is also the main challenge for TCPR. We showed how MLMs and text mining can be combined, but our proposition leaves open how to obtain the most relevant textual operationalization of TCPR concepts. That requires interdisciplinary collaboration and discussion. The future does look bright: based on our proof-of-concept study we conclude that MLMs and text mining can indeed advance TCPR. (shrink)

_Everyday Life and the Sacred_ offers gender sensitive interdisciplinary perspectives from the fields of feminist theology and religious studies on the everyday and the sacred. The volume aims to re-configure the current domain of religion and gender studies.