We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. (...) In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 9-17, May–June 2022.

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

A comprehensive collection of classic texts, contemporary interpretations, guidelines for activists, issue-specific information, and materials for environmentally-oriented religious practice. Sources and contributors include Basho, the Dalai Lama, Thich Nhat Hanh, Gary Snyder, Chogyam Trungpa, Gretel Ehrlich, Peter Mathiessen, Helen Tworkov (editor of Tricycle ), and Philip Glass.

Volume 20, Issue 5, June 2020, Page 31-33.

Ethical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

Healthcare delivery is an interpersonal endeavor. In every clinical interaction, providers have an ethical obligation to show respect to their patients, and ideally over time these interactions lea...

Volume 19, Issue 5, May 2019, Page 34-36.

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement (...) among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)

Millum and Bromwich provide a thorough and thoughtful analysis of what is required for sufficient informed consent, offering distinct conceptualizations of the ethical requirements of disclo...

Ethical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...

The target articles in this issue advance our understanding of bioethical considerations in pragmatic trials (Garland, Morain, and Sugarman 2023; Morain and Largent 2023). Both articles appreciate...

ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...) rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 21.1 (2001) 155-157 [Access article in PDF] Book Review Buddhist Peacework: Creating Cultures of Peace Buddhist Peacework: Creating Cultures of Peace. Edited by David W. Chappell. Somerville, Massachusetts: Wisdom Publications, 1999. 253 pp. This earnest book demonstrates the continuing vitality of Buddhism in many parts of the world. The contributing authors are the leading figures of contemporary engaged Buddhism, and they write from firsthand experience. The Dalai (...) Lama outlines methods for promoting harmony among different religious traditions. Thich Nhat Hanh shows how the principle of nonviolence was tested in the rescue ofVietnamese boat people during the 1970s. A.T. Ariyaratne presents the work of the influential Sarvodaya movement in Sri Lanka. Shih Cheng-yen, sometimes called "the Mother Theresa of Asia," describes the relief work ofTzu Chi, the largest charitable organization in Taiwan. Dhammachari Lokamitra documents the impact of an adopted Buddhism among former "untouchables" in India. Robert Aitken surveys engaged Buddhist activity in North America, including hospice work, prison reform, and sustainable farming. Many of the writers have personally suffered the deprivations of war and oppression; in some cases they continue their work amid threats of violence or arrest.An aim ofBuddhist Peacework is to offer a Buddhist response to a declaration that emerged from a 1994 meeting of world religious leaders organized by UNESCO. This document, "Declaration of the Role of Religion in the Promotion of a Culture of Peace," is included as an appendix. Two of the book's contributors, the Dalai Lama and the senior Cambodian monk Maha Ghosananda, participated in the UNESCO meeting. Indeed, some of the declaration's language has an engaged Buddhist ring: "We must be at peace with ourselves; we strive to achieve inner peace through personal reflection and spiritual growth, and to cultivate a spirituality which manifests itself in action."One of Buddhism's distinctive teachings on the subject of peace is the practice of "internal disarmament," the term used by the Dalai Lama in his essay. Unless individuals are able to tame the forces of greed, anger, and delusion in their own minds, the prospects for peace between communities and between nations are slim. For an engaged Buddhist, there must be alignment between "inner" and "outer" disarmament. One cannot work for peace--or any other worthy social goal--in an agitated, antagonistic way. In this collection, peacework is something one does as spiritual practice.Shakyamuni Buddha approached the existential problem of suffering by analyzing the causes of suffering. In a similar spirit, engaged Buddhists have embarked on a Buddhistic analysis of the causes of war and peace. Contributor José Ignacio Cabezón writes: "Peace cannot arise simply by wishing it into existence, but only by the cultivation of its causes.Viewing peace in this way has the salutary effect of shifting the emphasis of peacework from result to causes." Somewhere in that mix of causes we [End Page 155] eventually encounter ourselves. If the world is truly interdependent, we share responsibility for violence and atrocities occurring "elsewhere."Thich Nhat Hanh, in his essay, declares: "If we look deeply, we will observe that the roots of war are in the unmindful ways we have been living. We have not sown enough seeds of peace and understanding in ourselves and others, therefore we are co-responsible: 'Because I have been like this, they are like that.'" The notion of sowing "seeds of peace" is reinforced in the image on the book's cover: two hands tenderly plant a seedling in receptive soil.But internal disarmament is not enough. As editor David Chappell asserts, "Today there is a new urgency for that [inner] peacework to be manifest socially, ecologically, and materially."Witness the plight of several Buddhist (and formerly Buddhist) nations in Asia. "Recently, Buddhist countries have become notorious arenas of genocide and brutality," writes Karma Lekshe Tsomo. Citing Burma, Cambodia, China, Sri Lanka, and Tibet, Tsomo asks, "What went wrong?" Peacework also has new meanings in an age of ecocrisis. For Stephanie Kaza, "a first step in keeping peace with nature calls for contact with ecological suffering." Kaza highlights four ways to... (shrink)

De Marco _et al_ 1 argue that the standard account of medical ‘invasiveness’ (as ‘incision’ or ‘insertion’) fails to capture three aspects of its existing use, namely that invasiveness can come in degrees, often depends on features of alternative medical interventions and can be non-physical. They propose a new schematic account that suggests that medical interventions can possess ‘basic invasiveness’ (which can come in degrees and of which they suggest at least two types: physical and mental), and ‘threshold invasiveness’ which (...) can depend on the alternatives a specific intervention is being compared with. While we agree that the standard account of invasiveness fails to capture existing use and are supportive of their aim, here we express scepticism about the practical utility of De Marco _et al_’s revised account. Our scepticism concerns the application of De Marco _et al’s_ revised account in the narrow context of clinician–patient communication and... (shrink)

Transitioning to food systems that are equitable, resilient, healthy and environmentally sustainable will require the cultivation and diffusion of transformational sociotechnical innovations—and grassroots movements are an essential source of such innovations. Within the literature on strategic niche management, government-provided ‘protected spaces’ where niche innovations can develop without facing the pressures of the market is an essential part of sustainability transitions. However, because of their desire to _transform_ rather than _transition_ food systems, grassroots movements often struggle to acquire such protected spaces (...) and so must determine how and where to generate change whilst being marginalised and exposed to unprotected spaces. The aim of this research is to gain a precise view of the multiple touchpoints of marginalisation that exist across the grassroots-government interface and to apply a new framework for conceptual analysis of these touchpoints that can help to identify where and how grassroots movements might be able to push against this marginalisation. The study finds that, by applying a ‘who, what, where’ framework of analysis to policies across this interface, it is possible to find pathways forward for achieving small wins towards food systems transformation. (shrink)

"New foreword by Rhian Evans Allvin"--Cover.

Stephanie Kleiner beschreibt das Musiktheater in der Ära einer krisengeladenen klassischen Moderne und über die Zäsur des Ersten Weltkriegs hinweg als Ort sozialer Praxis und als Medium politischer Sinnbildung. Konkret nimmt sie die beiden damals preußischen Städte Frankfurt am Main und Wiesbaden in den Blick. Entlang einer Reihe von herausragenden Festanlässen werden einige markante Stationen der politischen Festkultur beider Städte abgeschritten und ihre Bedeutung für die staatliche Repräsentation bewertet.

There is disagreement in the literature about the exact nature of the phenomenon of empathy. There are emotional, cognitive, and conditioning views, applying in varying degrees across species. An adequate description of the ultimate and proximate mechanism can integrate these views. Proximately, the perception of an object's state activates the subject's corresponding representations, which in turn activate somatic and autonomic responses. This mechanism supports basic behaviors that are crucial for the reproductive success of animals living in groups. The Perception-Action Model, (...) together with an understanding of how representations change with experience, can explain the major empirical effects in the literature. It can also predict a variety of empathy disorders. The interaction between the PAM and prefrontal functioning can also explain different levels of empathy across species and age groups. This view can advance our evolutionary understanding of empathy beyond inclusive fitness and reciprocal altruism and can explain different levels of empathy across individuals, species, stages of development, and situations. Key Words: altruism; cognitive empathy ; comparative; emotion; emotional contagion; empathy ; evolution; human; perception-action; perspective taking. (shrink)

The Dark Posthuman: Dehumanization, Technology, and the Atlantic World explores how liberal humanism first enlivened, racialized, and gendered global cartographies, and how memory, ancestry, expression, and other aspects of social identity founded in its theories and practices made for the advent of the category of the posthuman through the dimensions of cultural, geographic, political, social, and scientific classification. The posthuman is very much the product of world-building narratives that have their beginnings in the commercial franchise and are fundamentally rooted in (...) science, governance, and economics around the hegemonic appropriation of environments and commodification of bodies that initially fuelled white settler life worlds and continue to be operational in the way we conceive of these worlds as continuous ontological formations. The want has always been for ownership of any of these dimensions of being without regard to condition, to not remain stranded as the subsidiary of another's being, to another's claim to humanity, and finally, to escape the suffocating confines of an instrumental ontology that suggests a subcategory of humanity without rights onto itself. The Dark Posthuman distinguishes the posthuman's place within both the liberal and neoliberal imaginary and reveals how its appearance first entrenched itself through the avarice of English settler colonialism, and subsequently, through the paranoia of American slavery. This same figure of the posthuman played a crucial role in the functional adaptation of Cold War behavioural cybernetics, and thereafter, in the fetishization of technology within the era of global financialization. The shadowing of this arrangement during and beyond the long duration of humanity's domination of this world becomes the structural web work of this book. Stephanie Polsky is an interdisciplinary writer and academic working in the areas of Media Studies and Visual Culture. Her work explores the confluence of power around race and gender as technologies of governance. She has lectured widely in media and cultural studies, critical theory, and visual culture at a number of prestigious institutions including Goldsmiths University, Regent's University London, University of Greenwich, and Winchester School of Art. Most recently she has worked at California College of the Arts in Critical Studies and Diversity Studies. She holds a PhD in Visual Cultures from Goldsmiths, University of London and an MA in Media Studies from the University of Sussex. Her books include The End of the Future: Governing Consequence in the Age of Digital Sovereignty (Academica Press, 2019), Ignoble Displacement: Dispossessed Capital in Neo-Dickensian London (Zero Books, 2015), and Walter Benjamin's Transit: A Destructive Tour of Modernity (Academica Press, 2009). (shrink)

This chapter focuses on the question of who has duties regarding poverty and what those duties demand, from within the perspective of contemporary analytic normative philosophy. The chapter is structured in three sections. Section 1 considers the duties of those living in poverty, which might be either self-regarding or other-regarding duties, and which must be tempered by concerns of overdemandingness. Section 2 considers the duties of affluent individuals. These are imperfect duties grounded in affluent individuals’ relations to the structures that (...) produce poverty: relations of contribution, benefit, and ability to change. Section 3 considers duties of collective agents – including states, for-profits, charities, and civil society groups. The poverty-related duties of these collective agents are sometimes perfect and sometimes imperfect, and include both primary and secondary duties, and both positive and negative duties. (shrink)

This chapter focuses on one of the common fallacies in Western philosophy called “stolen concept”. The fallacy of the stolen concept is most closely associated with the works of novelist Ayn Rand and those who find her philosophy persuasive. The defining characteristic of the fallacy is “the act of using a concept while ignoring, contradicting or denying the validity of the concepts on which it logically and genetically depends”. To the extent that one could be said to use a fallacy (...) intentionally, it is more likely to occur when there is a failed attempt to point to a contradiction. The easiest way to avoid stealing concepts is to ensure that contradictions are instituted at the same conceptual level or utilizing a lower‐order concept to contradict a higher‐order one. When higher‐order concepts are used to refute the truth of a lower‐order concept, we have the fallacy. (shrink)

Ethics and Educational Technology explores the creation and implementation of learning technologies through an applied ethical lens. The success of digital tools and platforms in today's multifaceted learning and performance contexts is dependent not only on effective design and pedagogical principles but, further, on an awareness of these technologies' interactions with and implications for users and social systems. This first-of-its-kind book provides an evidence-based, process-oriented model for ethics in technology-driven instructional design and development, one that necessitates intentional reflective practice, a (...) critical and theoretically informed interrogation of technology, and a participatory, emancipatory approach to technology design and applications. Rich with real-world ethics examples and design cases, supported by reflection questions and applied activities, and attentive to ethical codes among preeminent educational technology organizations, this is an ideal resource for students, faculty, researchers, and professionals across educational technology, instructional design, learning sciences, learning engineering, organizational training, and other disciplines. (shrink)

As part of the debate on multifaceted conceptions of education, non-formal education, a field difficult to define and characterize, emerges within in-between spaces abandoned by the dominant institutional system to serve a marginalized public to whom the right to education does not extend. Beyond a mere rejection of its form, the author uses the specific context of Mali to shed light on the flexibility and capacity for adaptation of community initiatives undertaken in the field of non-formal education, such as the (...) REFLECT approach, which is directly inspired by the learners' immediate environment. This approach serves as an illustration of certain methods of encountering otherness, the other in their individuality, and acts as a starting point for (re) thinking the education for excluded and highly vulnerable populations. (shrink)

2020 Gradiva Award Nominee, Best Edited Book Psychoanalytic Perspectives on Women and Their Experience of Desire, Ambition and Leadership considers how these factors can be understood, nurtured, or thwarted and the subsequent impact on women's identity, authority and satisfaction. Psychoanalysis has long struggled with its ideas about women, about who they are, how to work with them, and how to respect and encourage what women want. This book argues that psychoanalytic theory and practice must evolve to maintain its relevance in (...) a volatile landscape. Each section of the book begins with a chapter that reviews contemporary ideas regarding women, as well as psychoanalytic history, gender bias, and societal norms and deficits. Three composite clinical stories allow our distinguished contributors to discuss the contexts within which individual experience can be affected, and the role that clinical work may have to mobilize and advance passion and vitality. In their discussions, the interplay of clinical psychoanalysis, sociopolitical context, and understanding of gender, combine to offer a unique perspective, built on decades of scholarship, personal experience, and clinical expertise. Psychoanalytic Perspectives on Women and Their Experience of Desire, Ambition and Leadership will serve as a reference for all psychoanalysts and psychoanalytic psychotherapists as well as gender studies scholars interested in the progress of psychoanalytic theory regarding women in the 21st century. Contributors to this book include: Rosemary Balsam, Brenda Bauer, Andrea Celenza, Diane Elise, Adrienne Harris, Dorothy Holmes, Nancy Kulish, Vivian Pendar, Dionne Powell, and Arlene Richards. (shrink)

Argues that positive changes in perspective and deeper spiritual connections to things greater than oneself can influence the world for the better.

Though grassroots organizations have mobilized against US environmental injustices since; the 1980s, academic definitions of environmental justice (EJ) remain limited in important ways, including: a tendency to privilege cases where activists achieve a successful, ‘tidy’ outcome; inattention to roles natural resource dependence and free market systems play in structuring environmental inequality; and a tendency to under-analyze alternative notions of EJ that result, utilized by activists who prioritize local autonomy and procedural justice in land-use decision making. Here, I argue that these (...) alternative notions of EJ help mobilize divergent forms of EJ activism-‘sites of resistance’ to industrial production systems and their risks, and ‘sites of acceptance’ to those same practices. To illustrate, I explore extensive mixed method data in the context of energy development and sites of acceptance related to uranium production in the southwestern United States. I show how alternative notions of EJ are shaped by identification with uranium production, persistent poverty and economic insecurity, and faith that increased uranium production will fuel US nuclear power production and help combat global climate change. (shrink)