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.

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.

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)

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 deliberation about medical interventions within clinical practice, which we see as a crucial context for its use. While De Marco et al do not specify the contexts in which their revised account could be used, we assume from their discussion of treatment interventions (e.g. non-invasive prenatal testing, ventilation) and their comparison to ‘more or less invasive’ options, that at least one of the purposes in mind for …. (shrink)

Much has been written about the need for trustworthy artificial intelligence (AI), but the underlying meaning of trust and trustworthiness can vary or be used in confusing ways. It is not always clear whether individuals are speaking of a technology’s trustworthiness, a developer’s trustworthiness, or simply of gaining the trust of users by any means. In sociotechnical circles, trustworthiness is often used as a proxy for ‘the good’, illustrating the moral heights to which technologies and developers ought to aspire, at (...) times with a multitude of diverse requirements; or at other times, no specification at all. In philosophical circles, there is doubt that the concept of trust should be applied at all to technologies rather than their human creators. Nevertheless, people continue to intuitively reason about trust in technologies in their everyday language. This qualitative study employed an empirical ethics methodology to address how developers and users define and construct requirements for trust throughout development and use, through a series of interviews. We found that different accounts of trust (rational, affective, credentialist, norms based, relational) served as the basis for individual granting of trust in technologies and operators. Ultimately, the most significant requirement for user trust and assessment of trustworthiness was the accountability of AI developers for the outputs of AI systems, hinging on the identification of accountable moral agents and perceived value alignment between the user and developer’s interests. (shrink)

Young children learn about the power of God's love and creation through simple text and illustrations.

In this collected volume, the authors analyze the deficiencies of existing theory and present alternate explanations of Third World foreign policy behavior. The essays show how examining Third World experience can broaden our understanding of how and why states and non-state actors interact in the international system.

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)

Many meta-ethicists are alethists: they claim that practical considerations can constitute normative reasons for action, but not for belief. But the alethist owes us an account of the relevant difference between action and belief, which thereby explains this normative difference. Here, I argue that two salient strategies for discharging this burden fail. According to the first strategy, the relevant difference between action and belief is that truth is the constitutive standard of correctness for belief, but not for action, while according (...) to the second strategy, it is that practical considerations can constitute motivating reasons for action, but not for belief. But the former claim only shifts the alethist's explanatory burden, and the latter claim is wrong—we can believe for practical reasons. Until the alethist can offer a better account, then, I argue that we should accept that there are practical reasons for belief. (shrink)

This paper, Study II, is the second in a series of papers investigating the relative importance of social responsibility criteria in determining organizational effectiveness, using student samples. A revised version of the Organizational Effectiveness Menu was used as a questionnaire with a sample of 182 senior undergraduate and the MBA students from three universities. Each respondent was asked to rate the importance of the criteria from a manager's perspective. The results support the earlier findings that students responding as managers rate (...) social responsibility criteria, individually and collectively, among the least important of the potential determinants of organizational effectiveness. (shrink)

This chapter argues that the best way for a non-naturalist to explain why the normative supervenes on the natural is to claim that, while there are some sui generis normative properties whose essences cannot be fully specified in non-normative terms and do not specify any non-normative sufficient conditions for their instantiation, there are certain hybrid normative properties whose essences specify both naturalistic sufficient conditions for their own instantiation and sufficient conditions for the instantiation of certain sui generis normative properties. This (...) is the only metaphysical explanation for supervenience on offer, the chapter argues, that can both clearly maintain the pre-theoretical commitments of non-naturalism, and provide a metaphysical explanation not just for supervenience, but for all metaphysical necessities involving natural and normative properties. (shrink)

This essay employs strategies drawn from the emergent field of everyday aesthetics to explore the pleasures of reading Daniel Defoe’s Robinson Crusoe and Samuel Richardson’s Sir Charles Grandison. As a fictional paradigm, Crusoe has been a paradoxical inspiration, inviting critique as a seductive representative of colonial power, on the one hand, and eliciting admiration for his ability to provoke meaningful artistic and intellectual engagement from a diverse group of writers and thinkers, on the other hand. To many ordinary readers, he (...) has proved company worth keeping as a source of inspiration and personal pleasure primarily through his aesthetic approach to the structuring of everyday life. The fiction of Samuel Richardson continues the focus on the everyday, placing even greater emphasis on the relationship between the ethical and the aesthetic. In his final novel, Sir Charles Grandison, pleasure can scarce be felt without some commentary outlining the contours of moral significance, and the very act of moral reasoning is demonstrably affective for characters and readers alike. The essay ends with consideration of the power of literature, especially the realistic novel, to shape the ordinary lives of everyday readers. (shrink)

A surfeit of research confirms that people activate personal, affective, and conceptual representations when perceiving the states of others. However, researchers continue to debate the role of self–other overlap in empathy due to a failure to dissociate neural overlap, subjective resonance, and personal distress. A perception–action view posits that neural-level overlap is necessary during early processing for all social understanding, but need not be conscious or aversive. This neural overlap can subsequently produce a variety of states depending on the context (...) and degree of common experience and emotionality. We outline a framework for understanding the interrelationship between neural and subjective overlap, and among empathic states, through a dynamic-systems view of how information is processed in the brain and body. (shrink)

Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients and other stakeholders. However, it also has presented ethical challenges. An emerging challenge is how to understand the nature and extent of investigators’ obligations to patient-subjects. Prior scholarship on investigator duties has generally been grounded upon the premise that research and clinical care are distinct activities, bearing distinct duties. Yet this premise—and its corresponding implications—are challenged (...) when research and clinical care are deliberately integrated. After presenting three case studies from recent pragmatic clinical trials, we identify six differences between explanatory trials and embedded research that limit the application of existing scholarship for ascertaining investigator duties. We suggest that these limitations indicate a need to account for the implications of usual care and to move beyond a narrow focus on the investigator-subject dyad, one that better reflects the team- and institution-based nature of contemporary health systems. (shrink)

Business and Society Review, Volume 127, Issue S1, Page 283-298, Spring 2022.

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment preferences, which can be (...) instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry. (shrink)

Classic statements of research ethics advise against permitting physician-investigators to obtain consent for research participation from patients with whom they have preexisting treatment relationships. Reluctance about “dual-role” consent reflects the view that distinct normative commitments govern physician–patient and investigator–participant relationships, and that blurring the research–care boundary could lead to ethical transgressions. However, several features of contemporary research demand reconsideration of the ethics of dual-role consent. Here, we examine three arguments advanced against dual-role consent: that it creates role conflict for the (...) physician-investigator; that it can compromise the voluntariness of the patient-participant’s consent; and that it promotes therapeutic misconceptions. Although these concerns have merit in some circumstances, they are not dispositive in all cases. Rather, their force—and the ethical acceptability of dual-role consent—varies with features of the particular study. As research participation more closely approximates usual care, it becomes increasingly acceptable, or even preferable, for physicians to seek consent for research from their own patients. It is time for a more nuanced approach to dual-role consent. (shrink)

Unconsented pelvic exams under anesthesia are assaults cloaked in defense of healthcare education. Preemptive linguistic qualifiers “presumed” or “implied” attempt to justify such violations with flippancy toward their oxymoronic implications: to suggest a priori that consent can be assumed undermines its otherwise standalone social, ethical, and medico-legal reverence. In this paper I conceptualize “medical sexual assault” and argue that presumed consent for intimate exams exemplifies its definition. By bluntly describing pelvic exams as “penetration,” this work aims to reify the intimate (...) reality of the clinical label “pelvic exam” and to call attention to cisheteronormative and androcentric assumptions involved in its practice. Additionally, this scholarship seeks to create a foundation toward broader work in conceptualizing clinical rape culture. Given recent national survey data indicating a surprising frequency of unconsented intimate exams, detailed language as to their problematics is necessary for ongoing legal and ethical efforts. Explicit consent for intimate exams must be the standard of care for conscious and unconscious patients. (shrink)