Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of people with (...) physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that (...) bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust. (shrink)

Volume 20, Issue 3, March 2020, Page 21-24.

Many critics of the legalization of physician‐assisted death oppose it in part because they fear it will further disadvantage those who are already economically disadvantaged. This argument points to a serious problem of how economic considerations can influence medical decisions, but in the context of PAD, the concern is not borne out. We will provide empirical evidence suggesting that concerns about money influence medical decisions throughout the full course of illness, but at the end of life, financial pressure is much (...) more likely to influence a decision to pursue or reject aggressive life‐extending care than it is to influence a request for PAD. We will also address the question of whether financial pressure as a result of being poor—particularly in the context of an inadequate social safety net—robs people of their autonomy, rendering their informed request and consent invalid. We argue that it does not. We will emphasize the impracticality and injustice of rejecting the role of poverty as a legitimate factor in decision‐making, the irrational distinction between PAD and withdrawal of life‐sustaining care, and the more appropriate focus on the great flaws in the American health care system. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this essay, we (...) discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Well-designed pragmatic clinical trials (PCTs) are critical for improving healthcare delivery and patient outcomes (Haff and Choudhry 2018), and the article written by Garland et al. (2023) advance...

In response to the Covid‐19 pandemic, health care systems worldwide canceled or delayed elective surgeries, outpatient procedures, and clinic appointments. Although such measures may have been necessary to preserve medical resources and to prevent potential exposures early in the pandemic, moving forward, the indirect effects of such an extensive medical shutdown must not outweigh the direct harms of Covid‐19. In this essay, we argue for the reopening of evidence‐based health care with assurance provided to patients about the safety and necessity (...) of high‐value vaccinations, screenings, therapeutics, and procedures. To ensure that virtually all non‐Covid‐related services do not come to a halt again, health care systems and physician practices must preemptively increase their capacity, secure adequate personal protective equipment to safeguard health care personnel, and develop a measured approach to reclosing such routine health care, should it become necessary in the future. (shrink)

Volume 20, Issue 4, May 2020, Page 59-61.

Lukas J. Meier et al. offer the promise of a pathway for resolving clinical bioethical problems using an artificial intelligence interface. The ultimate goal, we assume, is...

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving (...) the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

Physicians, scholars, and policymakers continue to be concerned about conflicts of interests among health care providers. At least two main types of objections to conflicts of interest exist. Conflicts of interests may be intrinsically troublesome if they violate providers’ fiduciary duties to their patients or they contribute to loss of trust in health care professionals and the health care system. Conflicts of interest may also be problematic in practice if they bias the decisions made by providers, adversely impacting patient outcomes (...) or wastefully increasing health care costs. This latter objection may be observed in differences in the prescriptions written, procedures performed, or costs billed by health care professionals who have conflicting interests, when compared to those that do not have such financial relationships. (shrink)

To make a business case for corporate sustainability, firms must be able to sell their sustainable products. The influence that firm engagement with non-governmental organizations (NGOs) may have on consumer adoption of sustainable products has been neglected in previous research. We address this by embedding corporate sustainability in a cosmopolitan framework that connects firms, consumers, and civil society organizations based on the understanding of responsibility for global humanity that underlies both the sustainability and cosmopolitanism concepts. We hypothesize that firms’ sustainability (...) engagement and their NGO engagement influence consumer adoption of sustainable products. Empirically, we investigate the adoption of sustainable Eco-circle products made from recycled fibers marketed by Li Ning, a China-based global sportswear brand. We apply a stepwise regression approach to test our hypotheses with paper-and-pencil survey data from 217 Chinese consumers. We find adoption to be positively associated with consumers’ sustainability attitude but not with firms’ sustainability engagement. For firm–NGO engagement, these relationships are reversed: Adoption is positively associated with firm–NGO engagement, but not with consumers’ related attitude. Our results present a picture of the Chinese context in which there is a business case for corporate sustainability if firms’ words about sustainable product strategies are supported by signals from civil society about firm deeds. The results imply that in a Chinese context, firms need to be particularly aware of the role of NGOs when hoping to be rewarded for sustainability. (shrink)

Volume 20, Issue 4, May 2020, Page 108-110.

In lieu of an abstract, here is a brief excerpt of the content:Feminist Studies 41, no. 3. © 2015 by Feminist Studies, Inc. 689 Susannah Bartlow White Fear in Universities: The Story of an Assata Shakur Mural No one is going to give you the education you need to overthrow them. No one will teach you your true history, teach you your true heroes if they know that knowledge will set you free. Theory without practice is just as incomplete (...) as practice without theory. The two have to go together. —Assata Shakur, quoted on a mural at Marquette University What does it mean to whitewash? To terminate? I have been tasting and retasting these words on my tongue after a mural of Assata Shakur at Marquette University was whitewashed, and I was fired—terminated —for having supported the mural, ending a fourteen-year career in feminist academia. As the founding director of the Gender and Sexuality Resource Center (GSRC), my job was to build an academic support office for women’s, gender, and LGBTQ+ education and empowerment. In the center’s third year, Amanda Smith (a Marquette senior) and Jeanette Martín (a community artist and program assistant at the center) envisioned, planned, and executed the Assata Shakur mural project as a way to invite greater community interest. In my role as director of the center, I supported the project, communicated it to senior leaders, and spread the word about the community-painting day in late March 2015. The mural was on display for six weeks at the GSRC before a storm of  Students fill in detail of the Assata Shakur mural at Marquette University’s Gender and Sexuality Resource Center. Photograph by Amanda T. Smith. News and Views 691 media coverage in mid-May prompted the university to cover the mural in white paint and fire me for my support of the project. My experience of this process was as rapid as it sounds: I received a few phone calls alerting me that the whitewashing of the mural was imminent and that there was a formal review of my leadership decisions, and I was fired twenty-four hours later. The idiomatic usage of “whitewash” tells us that something is shameful and that it has been, or ought to be, covered up. Whose cover-up was it—and whose shame? Over the six weeks it was on display at the center, the mural invited people into a quiet space off a hallway, and it had sparked discussion among staff, faculty, and students who used the space. The mural was one of very few images of a black woman anywhere on Marquette’s campus, and it contributed to a sense among many students of color that the GSRC was a space in which they were welcomed and safe and where they could be comfortable. Yet in the distortions of white supremacy, the mural looked like a threat, rather than an intellectual and community representation central to the university itself. Other recent cases of faculty repression, from Steven Salaita to Saida Grundy and Zandria Robinson, demonstrate how concerns about liability, finances, and public perception guide administrators ’ decisions about representation on campuses. Far from being liberal utopias, or even spaces that respect speech, universities remain testing grounds when students’ or educators’ actions present direct antiracist critique. What more clear or direct example of antiracist critique than the quotes we chose for the mural: Assata Shakur’s own words asserting the importance of street smarts and intellectual prowess, naming the power invested in knowledge systems and the importance of claiming that power for ourselves? Universities are, in our time, particularly responsive to pressure from the right. Private, nonprofit, advocacy organizations troll university websites looking for evidence of liberal bias; conservative media outlets publish student bloggers who feed the fantasy that the facts of United States history, presented without whitewashing, do not belong in classrooms. In particular, those who study the lives and knowledges of historically marginalized populations are in the crosshairs of right-wing attacks. In the case of the mural—and in each of the other cases cited above— it was either a right-wing news source or a powerful donor or decision 692 News and Views maker who raised concerns about leftist bias, civility, or... (shrink)

True stories about people who triumphed over seemingly impossible medical diagnoses using untraditional, inventive therapies and perseverance--and about what scientists are discovering on the psychology of healing and the mind-body connection--from the author of theNew York TimesMagazinearticle about her own son, "The Boy with the Thorn in his Joints," which led to this book about other families.

Does the Ship of Theseus present a genuine puzzle about persistence due to conflicting intuitions based on “continuity of form” and “continuity of matter” pulling in opposite directions? Philosophers are divided. Some claim that it presents a genuine puzzle but disagree over whether there is a solution. Others claim that there is no puzzle at all since the case has an obvious solution. To assess these proposals, we conducted a cross-cultural study involving nearly 3,000 people across twenty-two countries, speaking eighteen (...) different languages. Our results speak against the proposal that there is no puzzle at all and against the proposal that there is a puzzle but one that has no solution. Our results suggest that there are two criteria—“continuity of form” and “continuity of matter”— that constitute our concept of persistence and these two criteria receive different weightings in settling matters concerning persistence. (shrink)

In Specters of Marx, Derrida suggests that a non-revolutionary — ‘spectral’ — Marxism could alleviate a contemporary crisis in imagining the future in the late twentieth century. This ‘presentist’...

Gilles Deleuze, arguably the best-known theorist of virtuality, describes the virtual as part of an ontology of becoming and multiplicity: he sees the virtual as a characteristic of being which is directly opposed to, but simultaneously constitutive of the actual aspect of reality, as a force that works mostly invisibly, but powerfully within the interstices of the material world, introducing constant flux into reality through its negotiations with the actual.1 This conception of the virtual represents something of a leitmotif for (...) the forty-four essays collected in The Oxford Handbook of Virtuality. The collection offers a wide range of approaches to virtuality as a philosophical and aesthetic concept as well as a... (shrink)

The psychology of science typically lacks integration between cognitive and social variables. We present a new framework of team innovation in multidisciplinary science and engineering groups that ties factors from both literatures together. We focus on the effects of a particularly challenging social factor, knowledge diversity, which has a history of mixed effects on creativity, most likely because those effects are mediated and moderated by cognitive and additional social variables. In addition, we highlight the distinction between team innovative processes that (...) are primarily divergent versus convergent; we propose that the social and cognitive implications are different for each, providing a possible explanation for knowledge diversity’s mixed results on team outcomes. Social variables mapped out include formal roles, communication norms, sufficient participation and information sharing, and task conflict; cognitive variables include analogy, information search, and evaluation. This framework provides a roadmap for research that aims to harness the power of multidisciplinary teams. (shrink)

The widespread receptivity of Jewish communities around the world to Meir Kahane demands that we reconsider our narrative of modern Jewish history and religious thought. His racism, calls for violence, and protofascism are startling, given the standard presentation that liberalism and assimilation mark the modern Jewish era. Even more startling is that Kahane's name almost never appears in the major surveys of American Judaism, the history of Zionism, and modern Jewish thought. Yet, Kahane's influence is growing rapidly and already outweighs (...) the influence of most other modern Jewish thinkers and shows no sign of abating, especially with the rise of authoritarian regimes around the world. (shrink)

A standard view in contemporary philosophy is that belief is involuntary, either as a matter of conceptual necessity or as a contingent fact of human psychology. We present seven experiments on patterns in ordinary folk-psychological judgments about belief. The results provide strong evidence that voluntary belief is conceptually possible and, granted minimal charitable assumptions about folk-psychological competence, provide some evidence that voluntary belief is psychologically possible. We also consider two hypotheses in an attempt to understand why many philosophers have been (...) tempted to view belief as involuntary: that belief is a prototype concept and that belief is a dual character concept. Altogether, our findings contribute to longstanding philosophical debates about the relationship between the will and the intellect, while also advancing scientific understanding of important social judgments. (shrink)

Gender transition may be figured as part of a broader creaturely process of being partners in our own becoming. Gender transition is explored through the lenses of transformation (including comparisons with theosis and with religious conversion) and neurodiversity. Humans are transformative creatures; trans and gender-variant people, like others, have the power to curate their own identities and are on a journey toward perfection. Our nature as humans, including our sexed and gendered nature, is not over-and-done-with. In this sense, our active (...) building and shaping of our identities and body-stories is not a rejection of a divine blueprint for human existence, nor an exercise of illegitimate human hubris, but rather a licit creaturely form of generativity. (shrink)

The recognition that female embodiment and feminine experience are legitimate and specific sites of the revelation of God’s love has been one of the most significant developments in theology in the last hundred years. However, an over-emphasis on feminine experience as supervening on female embodiment risks erasing unusual sex-gender body-stories and perpetuating the idea that only some bodies can mediate the divine. Feminist Theology’s future must involve a re-examination and re-negotiation of what it is to be feminist theologians without fixed (...) gender essences. Does Feminist Theology have space to hear from and nurture the voices of those whose gender experiences challenge a binary, either-or model? Can Feminist Theology, in contrast to much secular feminist theory, give space at the table to those whose sex-gender life stories undermine the notion that there is such a thing as a common or biologically-contingent feminine experience in the first place? (shrink)

These essays survey the histories, the theories and the fault lines that compose the field of memory research. Drawing on the advances in the sciences and in the humanities, they address the question of how memory works, highlighting transactions between the interiority of subjective memory and the larger fields of public or collective memory.

Biological individuality is a notoriously thorny topic for biologists and philosophers of biology. In this paper we argue that biological individuality presents multiple, interconnected questions for biologists and philosophers that together form a problem agenda. Using a case study of an interdisciplinary research group in ecology, behavioral and evolutionary biology, we claim that a debate on biological individuality that seeks to account for diverse practices in the biological sciences should be broadened to include and give prominence to questions about uniqueness (...) and temporality. We show that broadening the problem agenda of biological individuality draws attention to underrecognized philosophical issues and discussions and thereby organizes and enriches the existing debate. (shrink)

Why is racism so tenacious? Drawing from recent methodological innovations in the study of racism, this essay explores the appeal of racism and the erotics of race within the imagination. The slippery nature of racism, and its ability to alter its manifestations with ease and hide behind various disavowals, facilitates the racialization of both religious thought and social institutions.

As we so often trip about and lose our breath over speaking precisely to "what is rhetoric?," it should come to no surprise that being asked what we want of rhetoric, of language, of an other moves us to fidget, even brings us to blush. But if we pause with these questions, lips parted without yet the words to answer, we may notice a peculiar craving that churns before the naming. We want of rhetoric—but what? We are compelled toward rhetoric—whereto? (...) We seek in rhetoric—for? If this desire, what Hannah Arendt calls an appetite for love for its own sake, refers to the will to "have and to hold," our love in/for/through rhetoric always seems to slip from capture. So much so that after a whirl of... (shrink)

Three eminent scientists analyze the scientific, social, and political roots of biological determinism.

In Mourning Becomes the Law, Gillian Rose takes us beyond the impasse of post-modernism or 'despairing rationalism withour reason'. Arguing that the post-modern search for a 'new ethics' and ironic philosophy are incoherent, she breathes new life into the debates concerning power and domination, transcendence and eternity. Mourning Becomes the Law is the philosophical counterpart to Gillian Rose's highly acclaimed memoir Love's Work. She extends similar clarity and insight to discussions of architecture, cinema, painting and poetry, through which (...) relations between the formation of the individual and the theory of justice are connected. At the heart of this reconnection lies a reflection on the significance of the Holocaust and Judaism. Mourning Becomes the Law reinvents the classical analogy of the soul, the city and the sacred. It returns philosophy, Nietzsche's 'bestowing virtue', to the pulse of our intellectual and political culture. (shrink)

We live, according to some, in the century of biology, where we now understand ourselves in radically new ways as the insights of genomics and neuroscience have opened up the workings of our bodies and our minds to new kinds of knowledge and intervention. Is a new figure of the human, and of the social, taking shape in the 21st century? With what consequences for the politics of life today? And with what implications, if any, for the social, cultural and (...) human sciences? These are the issues that are discussed in this article, which argues that a new relation is requred with the life sciences, beyond commentary and critique, if the social and human sciences are to revitalize themselves for the 21st century. (shrink)

We have a mentalistic view of objects. This is due to the interdependence of folk psychology and folk physics, where these are interconnected by what I call Teleological Commingling. When considering events that don’t involve agents, we naturally default to tracking intentions, goal-directed processes, despite the fact that agents aren’t involved. We have a deep-seated intentionality bias which is the result of the pervasive detection of agency cues, such as order or non-randomness. And this gives rise to the Agentive Worldview: (...) we view nature as a whole as being infused with agency and purpose. Teleological Commingling and the Agentive Worldview it gives rise to are at the core of our conception of objects. I maintain that the ordinary view of material objects is rooted in an implicit, false theory. It should be given no weight in metaphysical debates about the nature of material objects. And this problematizes the central methodological assumption that metaphysical theories of material objects should be beholden to common sense. (shrink)

Neuroscientists now approach some of the deepest problems of the human condition - from illnesses and disorders such as Alzheimer's disease and schizophrenia, to the search for the nature of consciousness itself - in the belief that their science can say something useful about these processes and how to intervene in them. At the same time, by addressing the biological mechanisms involved in phenomena as varied as street violence, drug addiction and sexual orientation, the new science raises profound ethical, legal, (...) social and medical questions. Over many of these issues there is no clear consensus but rather, intense debate. Is memory a molecular process? Is schizophrenia a genetic disorder? What does the future hold for psychopharmacology? Can consciousness be computed and is artificial intelligence a real prospect? From Brains to Consciousness? brings together fourteen of the world's leading neuroscientists, psychologists, computer modellers and philosophers, in a series of chapters that offer fascinating and up-to-the-minute insight into the debates that are taking place in this exciting area of research. (shrink)

The Sexual Politics of Time will be of interest tostudents and researchers of time, memory, difference and cultural change, in subjects such as Media and ...

This article discusses the current ‘popularity’ of trauma research in the Humanities and examines the ethics and politics of trauma theory, as exemplified in the writings of Caruth and Felman and Laub.Written from a position informed by Laplanchian and object relations psychoanalytic theory, it begins by examining and offering a critique of trauma theory's model of subjectivity, and its relations with theories of referentiality and representation, history and testimony. Next, it proposes that although trauma theory's subject matter—the sufferings of others—makes (...) critique difficult, the theory's politics, its exclusions and inclusions, and its unconscious drives and desires are as deserving of attention as those of any other theory. Arguing that the political and cultural contexts within which this theory has risen to prominence have remained largely unexamined, the article concludes by proposing that trauma theory needs to act as a brake against rather than as a vehicle for cultural and political Manicheanism. (shrink)

Judaism and Modernity: Philosophical Essays challenges the philosophical presentation of Judaism as the sublime 'other' of modernity. Here, Gillian Rose develops a philosophical alternative to deconstruction and post-modernism by critically re-engaging the social and political issues at stake in every reconstruction.