Developing World Bioethics, Volume 22, Issue 3, Page 170-178, September 2022.

Canadian ethicists have a long legacy of leadership in advocating for standards and quality in healthcare ethics. Continuing this tradition, a grassroots organization of practicing healthcare ethicists (PHEs) concerned about the lack of standardization in the field recently formed to explore potential options related to professionalization. This group calls itself “practicing healthcare ethicists exploring professionalization” (PHEEP). This paper provides a description of the process by which PHEEP has begun to engage the Canadian PHE community in the (...) development of practice standards and related projects. By making our process and its ethical and cultural underpinnings transparent, we hope to prompt PHEs around the world to reflect on the importance of context, process and principles (not just outcomes) in the exploration of and possible movement towards professionalization. By sharing some of our key successes and challenges, we also hope to inspire our colleagues to recognize the value in developing practice standards and to contribute to this endeavor. (shrink)

In the face of environmental crises such as climate change, pollution and biodiversity loss—which all adversely impact on health—Gils-Schmidt and Salloch explore whether physicians can be justified in taking climate issues into account in clinical care.1 While their approach centres on the ‘climate-sensitive’ decisions, physicians can carry out on the micro-level of clinical decision-making, they encourage further discussions on how climate-related issues can be included across different levels of decision-making in healthcare. We propose a list of tasks and a (...) model to assist with navigating the range of factors and structural elements an environmentally sensitive ethics must address. Stephen Gardiner’s notion of a perfect moral storm is central to understanding these issues.2 Gardiner describes how a perfect moral storm occurs in the centre of three overlapping conditions for human action and policymaking in the face of climate change. This storm is driven by: (1) a lack of interest among current generations to meet global needs and accommodate the well-being of future generations, (2) a lack of ecological concerns for other parts of nature than humans and (3) weak ethical and political theories and institutions shaping policy decisions on issues with severe implications across borders and generations. Moreover, these conditions are embedded in the existing, complex world of ethically unjustified power imbalances and social injustice. The growing awareness of healthcare’s climate footprint has amplified and accelerated global, grassroots action to make healthcare more environmentally friendly. This includes incorporating environmental impacts into quality improvement methodologies, building communities of practice to explore how to make …. (shrink)

Involuntary commitment links the healthcare, public health, and legislative systems to act as a “carceral health-service.” While masquerading as more humane and medicalized, such coercive modalities nevertheless further reinforce the systems, structures, practices, and policies of structural oppression and white supremacy. We argue that due to involuntary commitment’s inextricable connection to the carceral system, and a longer history of violent social control, this legal framework cannot and must not be held out as a viable alternative to the criminal legal (...) system responses to behavioral and mental health challenges. Instead, this article proposes true alternatives to incarceration that are centered on liberation that seeks to shrink the carceral system’s grasp on individuals’ and communities’ lives. In this, we draw inspiration from street-level praxis and action theory emanating from grassroots organizations and community organizers across the country under a Public Health Abolition framework. (shrink)

This paper focuses on the _ethics of how_ to approach the introduction of MAiD as an organizational ethics challenge, a focus that diverges from the traditional focus in healthcare ethics on the _ethics of why_ MAiD is right or wrong. It describes a method co-designed and implemented by ethics and medical leadership at a tertiary hospital to develop a values-based, grassroots response to the decriminalization of assisted dying in Canada. This organizational ethics engagement method embodied core tenants that (...) drew inspiration from a variety of sources, including poetic ones. These tenants are: make the problem bigger; focus on values; cultivate open moral spaces; and trust emergence. The paper describes how these tenants were put into practice in order to create a rigorous and sustainable MAiD program that delivers high-quality care to patients and families while honoring the moral diversity of the hospital workforce. One of the goals in sharing this method is to provide a roadmap for healthcare organizations in Canada and other jurisdictions around the world that are facing the challenge of responding to patient requests for MAiD following the decriminalization of this care option. (shrink)

Background There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for more formalized medical ethics education and assessed preferences for teaching methods in a graduate level medical ethics curriculum. Methods In January 2018, following the successful implementation of a peer-led, grassroots medical ethics curriculum, (...) student leaders under faculty guidance conducted a cross-sectional survey with 562 of 1357 responses received among students enrolled in the School of Medicine, College of Nursing, Doctor of Physical Therapy and BS/ MD Professional Scholars programs at The Medical College of Georgia at Augusta University. An in person or web-based questionnaire was designed to measure perceived need for a more in-depth medical ethics curriculum. Results The majority of respondents were female, white and mid-20s in age. Almost half of respondents reported no prior medical ethics exposure or training in their previous educational experience, while 60% of students across all degree programs reported an interest in more medical ethics education and 92% noted that an understanding of medical ethics was important to their future career. Over a quarter of students were interested in pursuing graduate-level training in medical ethics, with case-based discussions, small group peer settings and ethics guest lectures being the most desired teaching methods. Conclusions The future physician, nursing and physical therapist workforce in our medical community demonstrated an unmet need and strong interest for more formal medical ethics education within their current coursework. Grassroots student-driven curricular development and leadership in medical ethics can positively impact medical education. Subsequent integration of interprofessional training in medical ethics may serve as a vital curricular approach to improving the training of ethically competent healthcare professionals and overcoming the current hierarchical clinical silos. (shrink)

STORY L, MAYFIELD‐JOHNSON S, DOWNEY LH, ANDERSON‐LEWIS C, YOUNG R and DAY P. Nursing Inquiry 2010; 17: 373–384 Getting on Target with Community Health Advisors (GOTCHA): an innovative stroke prevention projectHealth disparities along with insufficient numbers of healthcare providers and resources have created a need for effective and efficient grassroots approaches to improve community health. Community‐based participatory research (CBPR), more specifically the utilization of community health advisors (CHAs), is one such strategy. The Getting on Target with Community Health (...) Advisors (GOTCHA) project convened an interdisciplinary team to answer the call from 10 counties in the rural Mississippi Delta area of ‘The Stroke Belt’ to meet the region’s identified health needs, and to impact the health of a disparaged state. This article explores this CBPR project including the community involvement strategies, innovative CHA training curriculum, evaluation plan, and implications to healthcare professionals, particularly nurses. (shrink)

In Grassroots Spirituality, Robert Forman documents an important and profound shift in the nature of spirituality in North America, that strongly influences Europe as well. His exciting survey graphically illustrates the possibility of this "grassroots" movement shaping a creative era that responds to new and old needs of religiosity.

In this paper, we document the counter-data action and data activism of a grassroots affordable housing advocacy group in Atlanta. Our observation and insight into these data activities and strategies are achieved through ethnographic and engaged research and participatory design. We find that counter-data action through community-collected data is rooted in a legacy of Atlanta’s black activism and black scholarship; that this data activism enabled resource mobilization and critical conscious making; and that design and media production are essential post (...) counter-data action activities in data activism. Based on these findings, we urge the field of open government data to broaden their concept of social impact of data to include the use data to mobilize resources within oppressed communities not to influence policy and government but to build capacities within community in order to transform, not join, political structures. We also advocate that scholars within the fields of open government data, critical data studies, and data activism recognize the legacy and historic practice of data activism by black communities working towards social change. (shrink)

Local sustainable food systems have captured the popular imagination as a progressive, if not radical, pillar of a sustainable food future. Yet these grassroots innovations are embedded in a dominant food regime that reflects productivist, industrial, and neoliberal policies and institutions. Understanding the relationship between these emerging grassroots efforts and the dominant food regime is of central importance in any transition to a more sustainable food system. In this study, we examine the encounters of direct farm marketers with (...) food safety regulations and other government policies and the role of this interface in shaping the potential of local food in a wider transition to sustainable agri-food systems. This mixed methods research involved interview and survey data with farmers and ranchers in both the USA and Canada and an in-depth case study in the province of Manitoba. We identified four distinct types of interactions between government and farmers: containing, coopting, contesting, and collaborating. The inconsistent enforcement of food safety regulations is found to contain progressive efforts to change food systems. While government support programs for local food were helpful in some regards, they were often considered to be inadequate or inappropriate and thus served to coopt discourse and practice by primarily supporting initiatives that conform to more mainstream approaches. Farmers and other grassroots actors contested these food safety regulations and inadequate government support programs through both individual and collective action. Finally, farmers found ways to collaborate with governments to work towards mutually defined solutions. While containing and coopting reflect technologies of governmentality that reinforce the status quo, both collaborating and contesting reflect opportunities to affect or even transform the dominant regime by engaging in alternative economic activities as part of the ‘politics of possibility’. Developing a better understanding of the nature of these interactions will help grassroots movements to create effective strategies for achieving more sustainable and just food systems. (shrink)

Background:In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions.Objectives:We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these decisions ought to (...) be made.Research design:This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made.Participants and research context:We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders.Ethical considerations:The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient.Findings:As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress.Discussion:We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care.Conclusions:One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients. (shrink)

Local sustainable food systems have captured the popular imagination as a progressive, if not radical, pillar of a sustainable food future. Yet these grassroots innovations are embedded in a dominant food regime that reflects productivist, industrial, and neoliberal policies and institutions. Understanding the relationship between these emerging grassroots efforts and the dominant food regime is of central importance in any transition to a more sustainable food system. In this study, we examine the encounters of direct farm marketers with (...) food safety regulations and other government policies and the role of this interface in shaping the potential of local food in a wider transition to sustainable agri-food systems. This mixed methods research involved interview and survey data with farmers and ranchers in both the USA and Canada and an in-depth case study in the province of Manitoba. We identified four distinct types of interactions between government and farmers: containing, coopting, contesting, and collaborating. The inconsistent enforcement of food safety regulations is found to contain progressive efforts to change food systems. While government support programs for local food were helpful in some regards, they were often considered to be inadequate or inappropriate and thus served to coopt discourse and practice by primarily supporting initiatives that conform to more mainstream approaches. Farmers and other grassroots actors contested these food safety regulations and inadequate government support programs through both individual and collective action. Finally, farmers found ways to collaborate with governments to work towards mutually defined solutions. While containing and coopting reflect technologies of governmentality that reinforce the status quo, both collaborating and contesting reflect opportunities to affect or even transform the dominant regime by engaging in alternative economic activities as part of the ‘politics of possibility’. Developing a better understanding of the nature of these interactions will help grassroots movements to create effective strategies for achieving more sustainable and just food systems. (shrink)

Parental activism in education reform, while often portrayed as an exemplary manifestation of participatory democracy and grassroots action in response to entrenched corporate and bureaucratic interests, is in fact carefully cultivated and channeled through strategic networks of philanthropic funding and knowledge. This paper argues that these networks are characteristic of a contemporary form of neoliberal governance in which the philanthropic “gift” both obligates its recipients to participate in the ideological projects of the givers and obscures the incursion of market (...) principles into education behind a veneer of progressive activism. Drawing on archival research as well as personal interviews with Seattle-based reform advocates, representatives of philanthropic organizations, and school administrators, the paper points to the need to critically evaluate the “roots” in grassroots movements and trace their connections to larger institutions and agendas. (shrink)

The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a (...) cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (shrink)

Ideological positions are often rooted in binary terms. If a group or entity holds one ideological position then it seems reasonable that they cannot hold the opposing position. This has resulted in a division between corporate public relations and grassroots movements who oppose practices they believe negatively impact society and the environment. However, what happens when corporations practice ideologically justified business decisions that were called upon by grassroots movements for change? What happens to suppliers and distributors who must (...) operate under the demands of changing manufacturing and consumerbehaviors? This paper examines the blending of corporate commercial practice with social and environmental ethos that works to form commercial grassroots activism to positively impact manufacturing and purchasing behaviors. (shrink)

BiDil, a heart failure drug for African Americans, emerged five years ago as the first FDA approved drug targeted at a specific racial group. While critical scholarship and the popular media have meticulously detailed the history of BiDil from its inauspicious beginnings as a generic combination drug for the general population to its dramatic resuscitation as a racial medicine, the enthusiastic support shown by some African American interest groups has been too little understood, as has their argument that BiDil was (...) an important response to race-based health disparities. In this essay, we show how the drugmaker, NitroMed, used the support it had solicited from black advocacy groups and community members to market BiDil as a unique “grassroots” pharmaceutical to the African American community. We go on to situate BiDil, which relied on a domestic, U.S.-centered conception of race, within the context of the global nature of both race and health disparities. Ironically, the grassroots angle of the BiDil case ultimately obscured the global crisis in health disparities. Furthermore, we argue that the grassroots model initiated by NitroMed should be taken note of, as it marks a potential avenue for the marketing of other drugs in the future. (shrink)

The article is focused on social stigma in informal social control of drug abuse. Social stigma is considered as the three related components: negative stereotypes, prejudices, and discrimination. The discrimination as a behavioral result of stigma manifests itself in capability deprivation, compulsion and segregation. According to this scheme, informal social control is shown on the example of the four Russian grassroots initiatives, which can be observed at the present time. They are implementing various approaches. As empirical data we used (...) self-posted materials of these initiatives on the Internet. The textual data was analyzed by combination of content analysis and critical discourse analysis. We conclude that the spectrum of social stigma in sphere of informal control is quite wide: from its correction to its significant gain. And the gain of social stigma could not be marked as negative unambiguously. In case of some grassroots initiatives the effectiveness and potency of social control may be also based on strengthening the social stigma of people who use alcohol and drugs. The last conclusion is connected with some data from other countries. (shrink)

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the (...) theoretical conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

Fringe stakeholders with limited resources, such as grassroots organizations (GROs), are often ignored in business and society literature. We develop a conceptual framework and a set of propositions detailing how GROs strategically gain legitimacy and influence over time. We argue that GROs encounter specific paradoxes over the emergence, development, and resolution of an issue, and they address these paradoxes using cognitive, moral, and pragmatic legitimacy strategies. While cognitive and moral strategies tend to be used consistently, the flexible and paradoxical (...) use of pragmatic strategies has important consequences, both for GROs’ legitimacy and for their potential influence over powerful organizations associated with them. We enrich our framework with the help of two illustrative cases and discuss the implications of the framework for GROs’ legitimacy strategies in business and society literature. (shrink)

Since the first phase of the formal effort to sequence the human genome, geneticists, social scientists and other scholars of race and ethnicity have warned that new genetic technologies and knowledge could have negative social effects, from biologizing racial and ethnic categories to the emergence of dangerous forms of genetic discrimination. Early on in the Human Genome Project, population geneticists like Luigi Luca Cavalli-Sforza enthusiastically advocated for the collection of DNA samples from global indigenous populations in order to track the (...) history of human ancestry, migration, and languages, while social scientists like Troy Duster insisted that the new genetics was in danger of ushering in insidious practices of eugenics. The Human Genome Diversity Project's 1991 proposal to archive human genetic variation around the world quickly came under intense scrutiny by indigenous peoples and advocacy groups who worried that such measures could exploit indigenous groups as research populations and even resurrect racist taxonomies from the nineteenth century. (shrink)

During the COVID-19 pandemic, the media have repeatedly praised healthcare workers for their ‘heroic’ work. Although this gratitude is undoubtedly appreciated by many, we must be cautious about overuse of the term ‘hero’ in such discussions. The challenges currently faced by healthcare workers are substantially greater than those encountered in their normal work, and it is understandable that the language of heroism has been evoked to praise them for their actions. Yet such language can have potentially negative consequences. (...) Here, I examine what heroism is and why it is being applied to the healthcare workers currently, before outlining some of the problems associated with the heroism narrative currently being employed by the media. Healthcare workers have a clear and limited duty to treat during the COVID-19 pandemic, which can be grounded in a broad social contract and is strongly associated with certain reciprocal duties that society has towards healthcare workers. I argue that the heroism narrative can be damaging, as it stifles meaningful discussion about what the limits of this duty to treat are. It fails to acknowledge the importance of reciprocity, and through its implication that all healthcare workers have to be heroic, it can have negative psychological effects on workers themselves. I conclude that rather than invoking the language of heroism to praise healthcare workers, we should examine, as a society, what duties healthcare workers have to work in this pandemic, and how we can support them in fulfilling these. (shrink)

This book examines Mohism as a movement in early China. To analyze how the Mohists pursued power, the author analyzes nonviolence as a goal and strategy of the Mohist movement, the Mohists' creation of strategic knowledge, and their quest for a personhood that made their activism possible.

Background:This article combines foundational and empirical aspects of healthcare education and develops a framework for teaching ethical theories inspired by pragmatist learning theory and recent work on the concept of moral resilience. It describes an exemplary implementation and presents data from student evaluation.Objectives:After a pilot implementation in a regular ethics module, the feasibility and acceptance of the novel framework by students were evaluated.Research design:In addition to the regular online module evaluation, specific questions referring to the teaching of ethical theories (...) were added using simple (yes/no) and Likert rating answer formats.Participants and research context:At the Bern University of Applied Sciences, a total of 93 students from 2 parallel sub-cohorts of the bachelor’s program in nursing science were sent the online survey link after having been exposed to the same modular contents. A total of 62% of all students participated in the survey.Ethical considerations:The survey was voluntary and anonymous. Students were free to write their name and additional comments.Findings:Students consider ethical theories—as taught within the proposed framework—as practically applicable, useful, and transferable into practice.Discussion:Teaching ethical theories within the proposed framework overcomes the shortcomings described by current research. Students do not consider the mutually exclusive character of ethical theories as an insurmountable problem.Conclusion:The proposed framework is likely to promote the effectiveness of healthcare ethics education. Inspired by pragmatist learning theory, it enables students to consider ethical theories as educative playgrounds that help them to “frame” and “name” the ethical issues they encounter in daily practice, which is seen as an expression of moral resilience. Since it does not advocate a single ethical theory, but is open to the diversity of traditions that shape ethical thinking, it promotes a culturally sensitive, ethically reflected healthcare practice. (shrink)

This chapter attempts to identify some ethical concerns evoked by military engagement in healthcare reconstruction. By bringing empirical evidence to the ongoing debate in military and development communities we aim to shed some light on the central question if and how, from a military ethical point of view, military should be involved in healthcare reconstruction during stabilization and reconstruction operations in Uruzgan.

The book explores and explains the relationship between law and ethics in the context of medically related research in order to provide a practical guide to understanding for members of research ethics committees (RECs), professionals involved with medical research and those with an academic interest in the subject.

Healthcare Ethics, Law and Professionalism: Essays on the Works of Alastair V Campbell features 15 original essays on bioethics, and healthcare ethics specifically. The volume is in honour of Professor Alastair V Campbell, who was the founding editor of the internationally-renowned Journal of Medical Ethics, and the founding director of three internationally leading centres in bioethics, in Otago, New Zealand, Bristol, UK, and Singapore. Campbell was trained in theology and philosophy and throughout his career worked with colleagues from (...) various disciplines, including law and various branches of healthcare. The diversity of topics and depth of contributors' insights reflect the breadth and impact of Campbell's philosophical work and policy contributions to healthcare ethics. Throughout his long academic career, Campbell's emphasis on healthcare ethics being practice-oriented, yet driven by critical reflection, has shaped the field in vital ways. The chapters are authored by leading scholars in healthcare ethics and law. Directly engaging with Campbell's work and influence, the essays discuss essential questions in healthcare ethics relating to its methodology and teaching, its intersection with law and policy, medical professionalism, religion, and its translation in different cultural settings. Chapters also grapple with specific enduring topics, such as the doctor-patient relationship, justice in health and biomedical research, and treatment of the human body and the dead. (shrink)

Section One - Principles and concepts of healthcare law and ethics -- Section Two - Complaints, disciplinary proceedings and indemnity insurance -- Section Three - Confidentiality, disclosure and apologies -- Section Four - Alternative dispute resolution and relationship with colleagues -- Section Five - Liabilities beyond healthcare practices.

In the age of artificial intelligence, the common interest in human autonomy is experiencing a revival. Autonomy has formerly and mostly been investigated from a theoretical scientific perspective, in which scholars from various disciplines have linked autonomy with the concepts of dignity, independence from others, morality, self-awareness, and unconventionality. In a series of three semi-qualitative, preregistered online studies, we investigated laypersons' understanding of autonomy with a bottom-up procedure to find out how far lay intuition is consistent with scientific theory. First, (...) in Study 1, participants provided us with at least three and up to 10 examples of autonomous behaviors, for a total of 807 meaningful examples. With the help of blinded research assistants, we sorted the obtained examples into categories, from which we generated 34 representative items for the following studies. Next, in Study 2, we asked a new sample of participants to rate the degree of autonomy reflected in each of these 34 items. Last, we presented the five highest-rated and the five lowest-rated items to the participants of Study 3, whom we asked to evaluate how strongly they represented the components of autonomy: dignity, independence from others, morality, self-awareness, and unconventionality. We identified that dignity, independence from others, morality, and self-awareness significantly distinguished between high- and low-autonomy items, implying that high autonomy items were rated higher on dignity, independence from others, morality, and self-awareness than low autonomy items, but unconventionality did not. Our findings contribute to both our understanding of autonomous behaviors and connecting lay intuition with scientific theory. (shrink)

Healthcare professionals’ capacity to protect themselves, while caring for infected patients during an infectious disease pandemic, depends on their ability to practise universal precautions. In turn, universal precautions rely on the availability of personal protective equipment (PPE). During the SARS-CoV2 outbreak many healthcare workers across the globe have been reluctant to provide patient care because crucial PPE components are in short supply. The lack of such equipment during the pandemic was not a result of careful resource allocation decisions (...) in the global north, where the short supply could be explained through their high cost. Instead, they were the result of democratically elected governments prioritising low tax regimes over an adequate resourcing of their healthcare delivery systems. Such decisions were made despite global health experts warning about the high probability of pandemics like SARS-CoV2 occurring during our lifetimes. Avoidable allocation decisions by democratically elected political leaders resulted in a lack of sufficient PPE for healthcare professionals. After discussing and discounting various ethical arguments in support of a professional obligation to treat, even without or with suboptimal PPE, I conclude that these policy decisions were sufficiently grave that they provide a sound ethical rationale to justify healthcare workers’ refusal to provide care to infected patients. (shrink)

In healthcare, a tension sometimes arises between the injunction to do as much good as possible with scarce resources and the injunction to rescue identifiable individuals in immediate peril, regardless of cost (the “Rule of Rescue”). This tension can generate serious ethical and political difficulties for public policy makers faced with making explicit decisions about the public funding of controversial health technologies, such as costly new cancer drugs. In this paper we explore the appropriate role of the Rule of (...) Rescue in public resource allocation decisions by health technology funding advisory bodies such as the National Institute for Health and Clinical Excellence. We consider practical approaches to operationalising the Rule of Rescue from Australia and the UK before examining the relevance of individual moral imperatives to public policy making. We conclude that that whilst public policy makers in a humane society should facilitate exceptional departures from a cost effectiveness norm in clinical decisions about identified individuals, it is not so obvious that they should, as a matter of national public policy, exempt any one group of unidentified individuals within society from the rules of opportunity cost at the expense of all others. (shrink)

Women’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands (...) of commercially-funded groups now dominate the advocacy landscape. As pharma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the ability of pharma-funded groups to dominate the discourse and override less well-resourced patient and health advocacy groups. Although industry-funded groups argue that funding allows them to provide useful services, the trade-off in health risks, exorbitant prices and distorted information is far too high. Sincerity is beside the point; patients and the industry have differing interests when it comes to drug safety and efficacy, drug information and drug prices. A growing resistance movement is asserting the values of its activist predecessors and opposing the prevailing culture of pharma-funded advocacy. (shrink)

Introduction to healthcare ethics committees / D. Micah Hester and Toby Schonfeld -- Brief introduction to ethics and ethical theory / D. Micah Hester and Toby Schonfeld -- Ethics committees and the law / Stephen Latham -- Cultural and ...

Decision-making regarding healthcare expenditure hinges heavily on an individual's health status and the certainty about the future. This study uses data on propensity of general health exam (GHE) spending to show that despite the debate on the necessity of GHE, its objective is clear—to obtain more information and certainty about one’s health so as to minimise future risks. Most studies on this topic, however, focus only on factors associated with GHE uptake and overlook the shifts in behaviours and attitudes (...) regarding different levels of cost. To fill the gap, this study analyses a dataset of 2068 subjects collected from Hanoi (Vietnam) and its vicinities using the baseline-category logit method. We evaluate the sensitivity of Vietnamese healthcare consumers against two groups of factors (demographic and socioeconomic-cognitive) regarding payment for periodic GHE, which is not covered by insurance. Our study shows that uninsured, married and employed individuals are less sensitive to cost than their counterparts because they value the information in reducing future health uncertainty. The empirical results challenge the objections to periodic health screening by highlighting its utility. The relevance of behavioural economics is further highlighted through a look at the bounded rationality of healthcare consumers and private insurance companies in using and providing the service, respectively. (shrink)

This paper sketches a framework for the separation of church and state and, with the framework in view, indicates why a government’s maintaining such separation poses challenges for balancing two major democratic ideals: preserving equality before the law and protecting liberty, including religious liberty. The challenge is particularly complex where healthcare is either provided or regulated by government. The contemporary problem in question here is the contraception coverage requirement in the Obama Administration’s healthcare mandate. Many institutions have mounted (...) legal challenges to the mandate on grounds of religious freedom. The paper proposes a number of interconnected principles toward a resolution of the problem: for the institutional realm, specific principles for church-state separation and a principle concerning the protection of citizens’sense of identity; and for the ethics of citizenship in the conduct individuals, principles that provide an adequate place for natural (thus secular) reason in lawmaking and political decisions. (shrink)

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better (...) promote autonomy and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Navigating Intersex Healthcare: My OdysseyCynthiaI was born in 1965 with what the medical community called “ambiguous genitalia.” My initial announcement as a boy was called into question upon closer assessment of my atypical anatomy by medical specialists at a children’s hospital in Chicago. That team of medical experts included a pediatric urologist and a pediatric endocrinologist, as well as a prominent pediatric surgeon, who was at that time (...) presiding president of the relatively newly established American Pediatric Surgeons Association. I have wondered over the years whether, or to what extent, that status and position had any important impact on the unfolding of my medical case.Just over 100 days after my birth, I was surgically and socially reassigned female, and renamed Cynthia. My mother and physician father, ages 25 and 30, respectively, with two young sons at home, did the best they could to move ahead in life as a young family. Part of our family story is that my unusual birth contributed to my parents’ decision to move away from Chicago, where both of my parents had been raised and wanted to settle, and where my father had many professional opportunities. We relocated to Southern California to make a “fresh start” where no one would know the dark secret too terrible to be shared with any beyond a small circle of close friends and family. It would never be talked about openly.With the exception of the rare and dreaded occasions of medical appointments with my primary care physician, or maybe an endocrinologist to renew hormone prescriptions, my parents chose [End Page E3] to have me travel from our home in San Diego to a clinician in Los Angeles, away from my father’s medical colleagues. This decision was puzzling to me at the time, and maybe more so now. These trips were a source of considerable stress and anxiety, as I had no idea of what to expect; my mother told me only that treatment would “help me get my period started.” I was instructed to tell my friends and teachers that I was taking off school on a weekday to go on a “shopping trip” with my mother. As far as I know, these trips were never discussed at home with my older brothers. I heard years later that my parents disclosed some information about me with my brothers when my parents travelled outside the country. They felt that my brothers should know what had happened to me in the event of a catastrophic accident that might prevent my parents from telling me themselves. I suppose they believed that I wasn’t ready at the time to be told my own life and medical history. I can’t say for sure.I don’t want to judge my parents too harshly for how they handled my medical care. I know that it was an extremely stressful and uncertain time for them, and peer support, which I know now is so vitally important for both parents and young affected individuals like myself, was not made available to us. I never thought to ask about such help, or even consider the idea that anyone else would be in a similar situation like mine. I don’t think I would have been even remotely comfortable or willing to discuss it openly at that point.In my early twenties, I had to face another milestone in my journey and in my interactions with the medical community. I had yet to have the vaginoplasty I was told I “needed.” There was no discussion as to whether or not I wanted it or not. It just had to be done, and I was aware of the limitations I had at this vulnerable time in my life when my peer group was sexually active and I was not. My awareness of the obstacle posed by my difference made me avoid the topic of dating; it was difficult even to think about the possibility of a romantic relationship. I put it out of my mind, but I knew that it was a significant concern for my parents. My physician father did most of the prodding to get me to acknowledge the reality... (shrink)

The author offers perspectives that can assist healthcare managers in achieving the highest ethical standards as they face their roles as healthcare providers, employers, and community service organizations. He also examines how to comply with relevant laws and regulations, provide high quality patient care with limited resources, and more.

Ellen Fox and collaborators have produced the most detailed description of healthcare ethics practices in the United States available. Some findings are shocking for anyone committed to promoting q...

The increasing costs of healthcare delivery led to different political and administrative approaches trying to preserve the core values of the welfare state. This approach has well documented weaknesses namely with regard to healthcare rationing. The objective of this paper is to evaluate if independent healthcare regulation is an important tool with regard to the construction of fair processes for setting limits to healthcare. Methodologically the authors depart from Norman Daniels’ and James Sabin’s theory of accountability (...) for reasonableness and try to determine if new regulatory models—namely independent agencies—perform better with regard to the public disclosure of the reasons and rationales of healthcare rationing. In publicly financed healthcare systems independent regulation is an important tool to assure fair and reasonable procedures of prioritising services. In accordance with the principle of public accountability, independent regulatory agencies are particularly well suited to assure publicity of the decision-making processes, relevance of the rationale involved and particularly mechanisms for challenge and dispute resolution regarding limit setting decisions. It follows that independent healthcare regulation could be regarded not only as an instrument for performance improvement but also as a tool of social justice. The authors conclude by stating that accountability for reasonableness should be regarded as a landmark of any healthcare reform. And therefore regulators have the social task of assuring that the rationales for limit-setting decisions are clearly accessible to the public. (shrink)