This book is a volume in the Penn Press Anniversary Collection. To mark its 125th anniversary in 2015, the University of Pennsylvania Press rereleased more than 1,100 titles from Penn Press's distinguished backlist from 1899-1999 that had fallen out of print. Spanning an entire century, the Anniversary Collection offers peer-reviewed scholarship in a wide range of subject areas.

Indigenous nurse scholars across nations colonised by Europeans articulate the need for accomplices (as opposed to mere performative allies) to work alongside them and support their ongoing struggle for health equity and respect and to prioritise and promote culturally safe healthcare. Although cultural safety is now being mandated in nursing codes of practice as a strategy to address racism in healthcare, it is important that white nurse educators have a comprehensive understanding about cultural safety and the pedagogical skills needed to (...) teach it to undergraduate nurses. We open this article with stories of our journeys as two white nurses in becoming accomplices and working alongside Indigenous Peoples, as patients and colleagues. Our lived experience of the inertia of healthcare and education organisations to address systemic and institutional resistance to the practice of cultural safety underpins the intention of this article. We understand that delivering this challenging and complex topic effectively and respectfully is best achieved when Indigenous and white educators work together at the cultural interface. Doing so requires commitment from white nurses and power holders within universities and healthcare institutions. A decolonising approach to nurse education at individual and institutional levels is fundamental to support and grow the work that needs to be done to reduce health inequity and increase cultural safety. White nurse accomplices can play an important role in teaching future nurses the importance of critical reflection and aiming to reduce power imbalances and racism within healthcare environments. Reducing power imbalances in healthcare environments and decolonising nursing practice is the strength of a cultural safety framework. (shrink)

Disproportional morbidity and mortality experienced by ethnic minorities in the UK have been highlighted by the COVID-19 pandemic. The ‘Black Lives Matter’ movement has exposed structural racism’s contribution to these health inequities. ‘Cultural Safety’, an antiracist, decolonising and educational innovation originating in New Zealand, has been adopted in Australia. Cultural Safety aims to dismantle barriers faced by colonised Indigenous peoples in mainstream healthcare by addressing systemic racism.This paper explores what it means to be ‘culturally safe’. The ways in which New (...) Zealand and Australia are incorporating Cultural Safety into educating healthcare professionals and in day-to-day practice in medicine are highlighted. We consider the ‘nuts and bolts’ of translating Cultural Safety into the UK to reduce racism within healthcare. Listening to the voices of black, Asian and minority ethnic National Health Service (NHS) consumers, education in reflexivity, both personal and organisational within the NHS are key. By listening to Indigenous colonised peoples, the ex-Empire may find solutions to health inequity. A decolonising feedback loop is required; however, we should take care not to culturally appropriate this valuable reverse innovation. (shrink)

BackgroundResearch misconduct and questionable research practices have been the subject of increasing attention in the past few years. But despite the rich body of research available, few empirical works also include the perspectives of non-researcher stakeholders.MethodsWe conducted semi-structured interviews and focus groups with policy makers, funders, institution leaders, editors or publishers, research integrity office members, research integrity community members, laboratory technicians, researchers, research students, and former-researchers who changed career to inquire on the topics of success, integrity, and responsibilities in science. (...) We used the Flemish biomedical landscape as a baseline to be able to grasp the views of interacting and complementary actors in a system setting.ResultsGiven the breadth of our results, we divided our findings in a two-paper series with the current paper focusing on the problems that affect the integrity and research culture. We first found that different actors have different perspectives on the problems that affect the integrity and culture of research. Problems were either linked to personalities and attitudes, or to the climates in which researchers operate. Elements that were described as essential for success were often thought to accentuate the problems of research climates by disrupting research culture and research integrity. Even though all participants agreed that current research climates need to be addressed, participants generally did not feel responsible nor capable of initiating change. Instead, respondents revealed a circle of blame and mistrust between actor groups.ConclusionsOur findings resonate with recent debates, and extrapolate a few action points which might help advance the discussion. First, the research integrity debate must revisit and tackle the way in which researchers are assessed. Second, approaches to promote better science need to address the impact that research climates have on research integrity and research culture rather than to capitalize on individual researchers’ compliance. Finally, inter-actor dialogues and shared decision making must be given priority to ensure that the perspectives of the full research system are captured. Understanding the relations and interdependency between these perspectives is key to be able to address the problems of science.Study registrationhttps://osf.io/33v3m. (shrink)

For a significant number of patients, there exists no, or only little, interest in developing a treatment for their disease or condition. Especially with regard to rare diseases, the lack of commercial interest in drug development is a burning issue. Several interventions have been made in the regulatory field in order to address the commercial disinterest in these conditions. However, existing regulations mainly focus on the provision of incentives to the sponsors of clinical trials of orphan drugs, and leave unanswered (...) the overarching question about the rightful place of orphan drugs in resource allocation systems. In this article, we analyse the ethical aspects of funding research and development in the field of rare diseases. We then propose an ethical framework that can help health policy makers move forward in the difficult matter of fairly allocating resources for the prevention, diagnosis and treatment of rare diseases. (shrink)

Patients who search for a better treatment, an increased quality of life, or even a chance to preserve life itself may claim to have an interest in accessing investigational medicinal products (IMP), particularly when no validated treatment for their disease or condition exists. For many, awaiting the uncertain and time-consuming process of converting an IMP into an approved drug may not appear a realistic option, as prognoses may be grim and a dramatic outcome may seem hard to avert. Gaining access (...) to an IMP, however, often proves to be a difficult enterprise with a highly uncertain outcome. In addition, the process of seeking access to IMP is surrounded by various ethical issues that will be explored in this article. This paper explores the ethical concerns in two potential tracks of seeking access to IMP for minors: on an individual basis, or collectively, as a patient organisation. In this discourse, several unique ethical and regulatory concerns related to the direct negotiation of access to IMP for minor patients are identified, with a focus on product safety, the recruitment of research subjects, the unnoticed entry of market mechanisms in the recruitment of research subjects, and the sidelining of third parties in the recruitment process. The paper concludes with a concise reflection on the way forward. The quest for access to investigational drugs is particularly relevant to paediatric practice, in which a significant share of the drugs prescribed has never been tested in children or labelled for use in the paediatric population. (shrink)

Is humanisme uit de tijd of net heel acuut nodig? Wat is er veranderd sinds de wereldverovering door het Westen uit vorige eeuwen en het oude humanisme? De westerse mens blijkt roofzuchtig en dreigt de mensheid in de vernieling te duwen met klimaatveranderingen, structurele ongelijkheid en uitroeiing van de biodiversiteit. Daarom bepleit dit boek onze basishouding te veranderen: ja humanisme en democratie, maar dan voorbij het hyperindividualisme en de vermarkting van mens en natuur. We kunnen daarbij leren van de zogenaamde (...) primitieve culturen in hun omgang met de natuur. En we kunnen leren luisteren naar anderen, in plaats van hen vanzelfsprekend te negeren en vernederen. Zo’n vernieuwd niet-eurocentrisch en ecologisch humanisme en democratisch denken moeten we uitwerken, eerlijk maar ook bescheidener dan we gewend zijn. Dit boek geeft bouwstenen voor dit nieuwe wervende verhaal, ook om het opkomend populisme en antihumanisme à la Trump en Bolsonaro of de nieuwe autoritaire wereldspelers zoals China een halt toe te roepen met een menswaardig, sociaal en intercultureel zingevend en respectvol verhaal. (shrink)

The article examines the developments that made the legend of an Asian migration into Europe part of mainstream historiography during the eighteenth century. It was believed that the Norse god Odin was in fact a historical person, who had migrated from Asia to with the north of Europe with his tribe. The significance of this legend to how medieval poetry was received and debated in England has received little attention. The study falls into three sections. The first will trace the (...) significance of the Odin migration legend in discovering Germanic cultural origins. The second section examines the impact of the legend on philological studies, primarily in establishing a new category: the Gothic (i.e. Teutonic/germanic) poetic tradition. The final section will focus on the debate between two of the most important eighteenth-century pioneers of vernacular poetic tradition: Thomas Percy and Thomas Warton. Their discussion over whether the Asian foundation of Germanic (and thereby English) tradition had paved the way for later Arabian influences is instructive, as it shows how Eastern “others” were negotiated in the discovery of cultural and national roots. (shrink)

The participation of minors in clinical trials is essential to provide safe and effective medical care to children. Because few drugs have been tested in children, pediatricians are forced to prescribe medications off-label with uncertain efficacy and safety. In this article, we analyze how the enrollment of minors in clinical trials is negotiated within relationships of mutual trust between clinicians, minors, and their parents. After a brief description of the problems associated with involving minors in clinical research, we consider how (...) existing “relationships of trust” can be used as a place where the concerns of research subjects can be more fully discussed and addressed. Building on the tacit recognition of trust found in The European Clinical Trials Directive we make policy recommendations that allow for clearer, more ethically informed guidelines for enrolling minors in clinical research. (shrink)

This volume has its already distant or1g1n in an inter national conference on Evolutionary Epistemology the editors organized at the University of Ghent in November 1984. This conference aimed to follow up the endeavor started at the ERISS (Epistemologically Relevant Internalist Sociology of Science) conference organized by Don Campbell and Alex Rosen berg at Cazenovia Lake, New York, in June 1981, whilst in jecting the gist of certain current continental intellectual developments into a debate whose focus, we thought, was in (...) danger of being narrowed too much, considering the still underdeveloped state of affairs in the field. Broadly speaking, evolutionary epistemology today con sists of two interrelated, yet qualitatively distinct inves tigative efforts. Both are drawing on Darwinian concepts, which may explain why many people have failed to discriminate them. One is the study of the evolution of the cognitive apparatus of living organisms, which is first and foremost the province of biologists and psychologists (H. C. Plotkin, Ed. , Learning, Development, and Culture: Essays in Evolu tionary Epistemology, New York, Wiley, 1984), although quite a few philosophers - professional or vocational - have also felt the need to express themselves on this vast subject (F. M. Wuketits, Ed. , Conce ts and Approaches in Evolutionary Epistemology, Dordrecht Boston, Reidel, 1984). The other approach deals with the evolution of science, and has been dominated hitherto by (allegedly) 'naturalized' philosophers; no book-length survey of this literature is available at present. (shrink)

ABSTRACTThe quality of medicines is generally adequately assured by manufacturers and regulatory authorities for well-resourced settings, while the implementation of existing quality standards is challenged in many low- and middle-income countries. This situation of multiple pharmaceutical standards raises the question whether it could ever be ethically justified to compromise on the quality assurance of medicines depending on what individuals, communities, or societies can afford. In this paper, we contend that ethically, any unjustified exceptions to medicines’ quality assurance represents a violation (...) of the principles of beneficence and non-maleficence. Exceptions are only acceptable in exceptional and temporary circumstances, if based on a meaningful quality risk assessment, guided by a rigorous ethical framework built on the principles of independence, technical competence, transparency, and accountability. We also discuss how such exceptional and temporary circumstances should be defined/justified.... (shrink)

Cultural safety is increasingly recognised as imperative to delivering accessible and acceptable healthcare for First Nations Peoples within Australia and in similar colonised countries. A literature review undertaken to inform the inaugural Caring for Australians with Renal Insufficiency (CARI) guidelines for clinically and culturally safe kidney care for Aboriginal and Torres Strait Islander peoples revealed a timeline of the emergence of culturally safe kidney care in Australia. Thirty years ago, kidney care literature was purely biomedically focused, with culture, family and (...) community viewed as potential barriers to patient ‘compliance' with treatment. The importance of culturally informed care was increasingly recognised in the mid‐1990s, with cultural safety within kidney care specifically cited from 2014 onwards. The emergence timeline is discussed in this paper in relation to the five principles of cultural safety developed by Māori nurse Irihapeti Ramsden in Aotearoa/New Zealand. These principles are critical reflection, communication, minimising power differences, decolonisation and ensuring one does not demean or disempower. For the kidney care workforce, culturally safe care requires ongoing critical reflection, deep active listening skills, decolonising approaches and the eradication of institutional racism. Cultural safety is the key to truly working in partnership, increasing Indigenous Governance, respectful collaboration and redesigning kidney care. (shrink)

Background Relatively little information is available regarding the level of acceptance of evolution and knowledge about evolution in different educational settings in Europe. The aim of the present study is to fill this gap and provide a comprehensive overview of the current state of research regarding evolutionary knowledge and acceptance of students and teachers across Europe, based on a systematic literature review. -/- Results We identified 56 papers for the period 2010–2020, presenting results for 29 European countries. Both knowledge and (...) acceptance of evolution were assessed in 17 studies. Out of 13 instruments most commonly used in the literature, five have been used in the European context so far: ACORNS, CINS, I-SEA, KEE and MATE. Thirty-one other instruments were identified of which 16 were used in studies on knowledge and 15 in studies on acceptance. The extent of knowledge was hard to compare even within groups of the same education level due to the application of different instruments and assessment of different key concepts. Our results illustrate the persistence of misconceptions through all education levels. Comparing acceptance among different education levels and countries revealed a high diversity. However, a lack of evolution in curricula tended to be associated with rejection of evolution in some countries. European studies that investigated both acceptance of evolution and knowledge about evolution varied highly concerning the existence and strength of the relationship between these factors. However, some trends are visible, such as an increase of strength of the relationship the higher the education level. -/- Conclusions The present review highlights the lack of a standardized assessment of evolutionary knowledge and acceptance of evolution across Europe and, therefore, of reasonably comparable data. Moreover, the review revealed that only about one-third of all studies on acceptance and/or knowledge about evolution provided evidence for local validity and reliability. We suggest the use of assessment categories for both knowledge and acceptance instruments to allow for interpretation and comparison of sum scores among different sample groups. This, along with prospective comparative research based on similar samples, paves the way for future research aimed at overcoming current biases and inconsistencies in results. (shrink)

Pleidooi voor een nieuwe culturele wereldorde die niet uitgaat van het westerse denken in tegenstellingen, maar verschillende denkwijzen en opvattingen erkent en niet uitsluit.

The West emancipated itself from the old humanism long ago and in doing so distanced itself from 'heteronomy': it declared that man, and not a non-human power, should be the first reference to approach people and nature. Today, as heirs of this tradition, we are still stuck in Eurocentrism (and often racism), and now even threaten to ruin nature by destroying biodiversity and causing the climate to warm up dangerously. Applied through an anthropological perspective, this book calls for a NEED-humanism: (...) Not-Eurocentric, Ecological and (economically) Durable approach that can help promote inclusion and pluralism. (shrink)

As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...) incidental findings in imaging research. We conducted an interview study with a purposive sample of researchers at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium. Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity. (shrink)

This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts (...) on self and others. The paper shows: that the impact of incidental findings may be greater than participants at first let on; incidental findings can have significant effects on participants’ social environment; and participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants’ experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. (shrink)

The article recently published in this journal by Dr B A Rix, a member of the Danish Council of Ethics (DCE), was heavily criticised by Dr David Lamb and Mr Christopher Pallis in subsequent commentaries. The editorial column by Professor Raanan Gillon also criticised the position put forward by Rix. In this article I contend that the definition of death put forward by Pallis and Lamb suffers certain philosophical shortcomings, that the position put forward by Rix deserves fuller consideration, and (...) that Rix is not to be dismissed easily. (shrink)

Dit boekt brengt negen opstellen samen van Gentse filosofen en godsdienstwetenschappers. Etienne Vermeersch, Freddy Mortier, Johan Braeckman met Stefaan Blancke, Rik Pinxten, Patrick Loobuyck, Balagangadhara Rao met Sarah Claerhout, Benjamin Biebuyck, Nel Grillaert, en Danny Praet leveren, elk vanuit hun eigen interesses en expertises, kritische bijdragen over de complexe relatie tussen christendom en filosofie: wijsgerige kritiek op het christendom en christelijk gebruik van de filosofie. Vanuit het ruimere perspectief van de interactie tussen wijsbegeerte, wereldbeeld en wetenschappen bestrijken de elf (...) auteurs de volledige periode van het vroege christendom tot het hedendaagse fundamentalisme. Het boek bevat zowel historische als theoretische benaderingen. Drie bijdragen hebben het werk en de impact van Nietzsche tot thema, drie bespreken verschillende aspecten van het fundamentalisme. Thema’s zoals het geloof in een hiernamaals, de relatie tussen christenen en niet-christenen, de impact van het christendom op het westerse wereldbeeld en de benadering van andere culturen, en de radicale kritiek van filosofen op het theïsme en de christelijke moraal maken van deze bundel een uitzonderlijk rijke collectie die lezers met diverse interesses zal aanspreken. (shrink)