There are no moral cookbooks—no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems.

Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio (...) or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms “network of exchange” and “intergenerational solidarity” to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended. (shrink)

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians (...) and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)

A man with Alzheimer's who wanders around, a caregiver who disconnects the alarm, a daughter acting on het own, and a doctor who is not consulted set the stage for a feminist reflection on capacity/competence assessment. Feminist theory attempts to account for gender inequality in the political and in the epistemological realm. One of its tasks is to unravel the settings in which actual practices, i.c. capacity/competence assessment take place and offer an alternative. In this article the focus will be (...) on a feminist ethics of care in which relationality, care, vulnerability, and responsibility are privileged concepts and attitudes. The emphasis on these notions leads to a specific view of autonomy that has consequences for both carereceivers (patients, clients) and caregivers (professional and not professional). These concepts constitute a default setting that shapes the context for capacity/competence assessment. Whereas this notion is meant to distinguish between those who need to be taken care of and those who do not, reflection on what it means to say ‘those who need to be taken care of’ is also required. The feminist analysis presented here emphasizes the necessity of the contextualization of assessment of competence. It sketches the multifold and complex grid that comprehends capacity assessment. (shrink)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of AI technologies (or AI- Inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we examine the conditions under which we can have institutional epistemic trust in AI- inclusive healthcare systems and their members' medical information providers. In particular, we discuss that institutional epistemic trust in AI-inclusive healthcare depends, in part, on the reliability of AI-inclusive medical practices (...) and programs, its knowledge and understanding amongst different stakeholders, its effect on epistemic and communicative duties and burdens on medical professionals, and finally, its interaction with ethical values and interests as well as background socio-political conditions which shape AI-inclusive healthcare systems. To assess the applicability of these conditions, we explore a proposal for AI-inclusivity within the Dutch Newborn Screening Program, thereby illustrating the importance, scope, and potential challenges of fostering and maintaining institutional epistemic trust in a context where generating, assessing, and providing reliable and timely screening results for genetic risk is of high priority. Finally, to motivate the general relevance of our discussion and case study, we provide suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (shrink)

With a large number of forcibly displaced people seeking safety, the EU is facing a challenge in maintaining solidarity. Europe has seen millions of asylum seekers crossing European borders, the largest number of asylum seekers since the second world war. Endemic diseases and often failing health systems in their countries of origin, and arduous conditions during transit, raise questions around how to meet the health needs of this vulnerable population on arrival in terms of screening, vaccination, and access to timely (...) and appropriate statutory health services. This paper explores the potential role of the principle of reciprocity, defined as the disposition ‘to return good in proportion to the good we receive, and to make reparations for the harm we have done’, as a mid-level principle in infectious disease screening policies. More than half of the European countries implemented screening programmes for newly arrived asylum seekers. Screening may serve to avoid potential infectious disease risks in the receiving countries as well as help identify health needs of asylum seekers. But screening may infringe upon basic rights of those screened, thus creating an ethical dilemma. The use of the principle of reciprocity can contribute to the identification of potential improvements for current screening programmes and emphasizes the importance of certain rights into guidelines for screening. It may create a two way moral obligation, upon asylum seekers to actively participate in the programme, and upon authorities to reciprocate the asylum seekers’ participation and the benefits for the control of public health. The authors argue that the reciprocity principle leads to a stronger ethical justification of screening programmes and help achieve a balance between justifiable rights claims of the host population and the asylum seekers. The principle deserves a further and more thorough exploration of its potential use in the field of screening, migration and infectious diseases. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Should doctors have the possibility to save children from incurable suffering and end their lives?. At first glance, the standpoints in the debate around this question seem translucent and well known and the debate intelligible. I contend that this is not the case and I will illustrate this in analysing the debate between Peter Singer and Ulrich Bleidick. Whomever wants to answer the question whether it is acceptable to end the lives of suffering small children will have to do some (...) careful reading and thinking about the different and differing moral arguments in the debate. This demands emotional restraint and intellectual honesty. Trying to understand Singer and his opponents is a challenging way of charting what exactly is at stake in this debate. (shrink)

BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...) participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.MethodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processes relating to their participation in a large-scale, centralized repository for health research data.ResultsThe decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants’ perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.ConclusionsOur findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures. (shrink)

Parents’ perception of having no choice and strong emotions like fear about the prospect of living liver donation can lead professionals to question the voluntariness of their decision. We discuss the relation of these experiences (no choice and emotions), as they are communicated by parents in our study, to the requirement of voluntariness. The perceived lack of choice, and emotions are two themes we found in the interviews conducted within the “Living Related Donation; a Qualitative-Ethical Study” research program. As a (...) framework for the interpretation of these themes we discuss views of moral agency. We adopt a view in which relations are seen as constitutive of moral agency. Judging from this view, the perceived lack of choice can best be understood as a sign of commitment. We argue in this article that neither seeing no choice, nor emotions in themselves should be seen as compromises of a voluntary consent. However both experiences draw attention to aspects that are important to come to an evaluation of consent to donation. We discuss the story of one mother as an exemplary case to show how both themes can intertwine. (shrink)

Public and academic medical ethics debates surrounding justice and age discrimination often proceed from a problematic understanding of old age that ignores the diversity of older people. This article introduces the feminist perspective of intersectionality to medical ethical debates on aging and old age in order to analyze the structural discrimination of older people in medicine and health care. While current intersectional approaches in this field focus on race, gender, and sexuality, we thus set out to introduce aging and old (...) age as an additional category that is becoming more relevant in the context of longer life expectancies and increasing population aging. We analyze three exemplary cases on the individual, institutional, and public health level, and argue that considering the intersections of old age with other social categories helps to accommodate the diverse identities of older people and detect inequality and structural discrimination. (shrink)

Despite being a collection of holistic assessment tools, the comprehensive geriatric assessment primarily focuses on the social category of age during the assessment and disregards for example gender. This article critically reviews the standardized testing process of the comprehensive geriatric assessment in regard to diversity-sensitivity. I show that the focus on age as social category during the assessment process might potentially hinder positive outcomes for people with diverse backgrounds of older patients in relation to other social categories, such as race, (...) gender or socio-economic background and their influence on the health of the patient as well as the assessment and its outcomes. I suggest that the feminist perspective of intersectionality with its multicategorical approach can enhance the diversity-sensitivity of the comprehensive geriatric assessment, and thus improve the treatment of older patients and their quality of life. By suggesting an intersectional-based approach, this article contributes to debates about justice and diversity in medical philosophy and advocates for the normative value of diversity in geriatric medicine. (shrink)

Ikhwan al-Safa' (The Brethren of Purity) were the anonymous adepts of a tenth-century esoteric fraternity of lettered urbanites that was principally based in Basra and Baghdad. This brotherhood occupied a prominent station in the history of science and philosophy in Islam due to the wide reception and assimilation of their monumental encyclopaedia: Rasa'il Ikhwan al-Safa' (The Epistles of the Brethren of Purity). This compendium contained fifty-two epistles that offered synoptic explications of the classical sciences and philosophies of the age. Divided (...) into four classificatory parts, it treated themes in mathematics, logic, natural philosophy, psychology, metaphysics and theology, in addition to moral and didactic fables. The Ikhwan were learned compilers of scientific and philosophical knowledge, and their Rasa'il constituted a paradigmatic legacy in the canonization of philosophy and the sciences in mediaeval Islamic civilization. -/- This present volume gathers studies by leading philosophers, historians and scholars of Islamic Studies, who are also the editors and translators of the first Arabic critical editions and first complete annotated English translations of the Rasa'il Ikhwan al-Safa', which will be published in the OUP Series that this present volume initiates, as well as being members of the Editorial Board. -/- The chapters of this present volume explore the conceptual and historical aspects of the philosophical and scientific contents of the Rasa'il and their classification, as well as investigating the authorship and dating of this corpus and the impact that the Ikhwan's intellectual tradition exercised in the unfolding of the history of ideas in Islam. (shrink)

Criticism on the thoughts of Ki Ageng Suryomentaram, a Javanese philosopher, on self-knowledge and mysticism.

This paper tests three main theses by the French political scientist Olivier Roy concerning the social integration of Islamic neofundamentalists in Europe. Firstly, Roy assumes that Islamic neofundamentalists have a strong global identity, but only a weak national identity and are therefore uprooted. Secondly, Roy expects Islamic neofundamentalists to live segregated from the majority society and avoid respective contact. Thirdly, Roy presumes that Islamic neofundamentalists feel discriminated against. We test these assumptions with data based on a survey on different patterns (...) of Muslim religiosity. The study was conducted in 2009 among Muslims in selected cities in North-Rhino Westphalia containing an oversample of highly religious Muslims (N=228). As a first step, we measure Islamic neofundamentalism by means of agreement with the main religious tenets. As a second step, we analyze the association of Islamic neofundamentalism with uprootedness, segregation and perceived discrimination. (shrink)

The COVID-19 pandemic may affect the world severely in terms of quality of life, political, environmental, and economic sustainable development, and the global economy. Its impact is attested to by the number of research studies on it. The main aim of this study is to evaluate the impact of COVID-19 on the psychology of sustainability, on sustainable development, and on the global economy. A computerized literature search was performed, and journal articles from authentic sources were extracted, including MEDLINE, Google Scholar, (...) Science Direct, ProQuest, and Emerald Insight. The references in selected articles were screened to identify any relevant studies. The following inclusion criteria were followed: research articles based on the COVID-19 pandemic, and articles, research papers, journals, and news articles published 2010 to 2020. The exclusion criteria were as follow: psychology research, articles, and journals published before 2010 and research articles having no link with the current pandemic’s impact on the psychology of sustainability, quality of life, and the global economy. Of the initial 350 articles identified, only 61 studies were found to be relevant and meet the inclusion criteria. Based on these articles, the review highlights that compared to developed countries, the developing nations and poor nations such as African countries with compromised health structures have been greatly affected. There are close associations between health, economic, environmental, and political issues globally. The pandemic can be managed if we follow new policies that implement economic and public health changes worldwide. A planned, coordinated approach between the public-private sector is required, designed according to each country’s health system and economy. We can come out of this crisis if we work together and support both developed and developing nations. (shrink)

BackgroundThe concept of ‘successful ageing’ has been a prominent focus within the field of gerontology for several decades. However, despite the widespread attention paid to this concept, its intersectional implications have not been fully explored yet. This paper aims to address this gap by analyzing the potential ageist and ableist biases in the discourse of successful ageing through an intersectional lens.MethodA critical feminist perspective is taken to examine the sensitivity of the discourse of successful ageing to diversity in societies. The (...) paper analyzes how ageist and ableist biases can manifest in the ways we conceptualize ageing, drawing on examples in the context of mental health.ResultsWe argue that the conventional approach to successful ageing is limited in its ability to account for the experiences of people who have faced intersectional discrimination throughout their lives. Drawing on examples in the context of mental health, we explore among others the link between depression and disabilities. Furthermore, we shed light on the negative impact of ageist and ableist attitudes concerning the diagnosis and treatment of dementia.DiscussionWe demonstrate how diversity is often overlooked in discussions of ageing well, and how ageist and ableist biases can manifest in the ways we conceptualize ageing. We argue that focusing solely on the health status as a means of achieving success fails to adequately counter ageism for all people. We further emphasize the role of structural factors, such as ageist attitudes, in shaping the experience of ageing and exacerbating health inequalities.ConclusionOverall, our findings emphasize the need for a more nuanced and inclusive understanding of ageing and therefore an intersectional approach to conceptions of ageing well that recognizes and addresses the biases and limitations of current discourses. Thereby, this paper offers valuable insights into the complex intersections between age and disabilities from a bioethical perspective, highlighting the need for a more inclusive and intersectional approach to ageing. (shrink)

-- -- sefer 2. Śiḥot musar ṿe-hitbonenut she-neʼemru bi-Yeshivat Ponivez' -- sefer 3. Elul, Yamim noraʼim.

Sixteenth century text with commentary on Vedanta.

On Nahdlatul Ulama, the largest Islamic organization and its contributions in the development of politics in Indonesia.