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Digitalhealth includes applications for smartphones and smart speakers as well as more traditional ways to accesshealth information electronically, such as through yourhealthcare provider's online web‐based patient portal. As the number of digitalhealth offerings—such as smartphonehealth trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digitalhealth product development? For starters, the field of bioethics is concerned about issues of social justice, including equitable (...) benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digitalhealth applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digitalhealth products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digitalhealthcaredisparities. (shrink)

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Recent policy debates in the US over access to mentalhealthcare have raised several philosophically complex ethical and conceptual issues. The defeat of mentalhealth parity legislation in the US Congress has brought new urgency and relevance to theoretical and empirical investigations into the nature of mental illness and its relation to other forms of sickness and disability. Manifold, nebulous, and often competing conceptions of mental illness make the creation of coherent public policy exceedingly difficult. Referencing (...) a variety of approaches to ethical reflection onhealthcare, and drawing from the empirical literature on therapeutic efficacy and economic efficiency, we argue that differential rationing, ‘disparity,’ is unjustifiable. (shrink)

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This article will examine the Catholic concept of global justice within ahealthcare framework as it relates to women's needs for delivery doctors in the developing world and women's demands for assisted reproduction in the developed world. I will first discuss justice as a theory, situating it within Catholic social teachings. The Catholic perspective on global justice inhealthcare demands that everyone have access to basic needs before elective treatments are offered to the wealthy. (...) After exploring specific discrepancies in globalhealthcare justice, I will point to the need for delivery doctors in the developing world to provide basic assistance to women who hazard many pregnancies as a priority before offering assisted reproduction to women in the developed world. The widedisparities between maternalhealth in the developing world and elective fertility treatments in the developed world are clearly unjust within Catholic social teachings. I conclude this article by offering policy suggestions for moving closer tohealthcare justice via doctor distribution. (shrink)

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IntroductionThere is a significant disparity in the United States between thehealthcare received by children with specialhealthcare needs versus physically healthy children.ObjectiveThe objective of the paper is to show that children with special needs receive less than adequatehealthcare overall. This disparity affects the quality of life for these children and influences their ability to live their lives to their full potential.MethodsResearch was conducted by examining multiple studies with a focus (...) on six major factors that play a role in creating this disparity.ResultsThe findings show an alarming trend in the access and delivery ofhealthcare to children with specialhealthcare needs.ConclusionsSolutions to correcting thedisparities are possible, but it will take a full understanding of the issues, perseverance, dedication, and hard work on the part of families, physicians, legislators, and others genuinely interested in creating an equalhealthcare system for all children. (shrink)

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In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:HealthCare Ethics: A Comprehensive Christian Resource by James R. ThobabenPaul D. SimmonsHealthCare Ethics: A Comprehensive Christian Resource by James R. Thobaben Downers Grove, IL: Intervarsity Press, 2009. 429pp. $28.00In recent years, a stir has been created by the vocal and aggressive involvement of evangelicals in such issues as abortion, homosexuality, and end-of-life decisions. James Thobaben, the dean of Asbury Seminary, provides what he (...) calls a [End Page 203] “comprehensive resource” for evangelicals, and promises better understandings of their perspectives and commitments for those who are baffled or frustrated by the actions and claims of those on the religious right.Thobaben casts a wide net when defining those he includes as “evangelicals”—Southern Baptists, members of Campus Crusade, Pentecostals, the Holiness movement, neoevangelicals, charismatics, and Anabaptists. These diverse groups are evangelicals because of their “consistency on moral choices,” doctrinal orientation, and styles of social advocacy (24). Although they differ in a number of ways, they all share having been influenced in some way by John and Charles Wesley, Jonathan Edwards, and the Reformation. All stress conversion in that “one must say yes to the divine Jesus Christ” and become identified with the community of faithful believers (57). And in recent decades, they have become a potent political force with regard to the issues of abortion and homosexuality.Thobaben covers a wide range of topics in this book: from a general discussion of theodicy and healing to bioethics, disability, sickness, family and congregationalcare, professional truthfulness, managingcare, end-of-life decisions, assisted reproduction, organ donation, and death. Yet, although he claims to provide a “comprehensive resource” on evangelical Christianhealthcare ethics, he fails to provide a thorough examination of his subject matter. For example, Thobaben pays little attention to the historic beginnings of the religious right. One misses any mention of political action groups or the coalitions formed with or by conservative Christian groups to pursue social reforms, or of why such disparate groups have cooperated for political or social goals under the same umbrella. He focuses solely on identifying and articulating the consensus among those who embrace certain moral values on the current scene. Thobaben’s uncritical approach to his subject matter leaves the impression that this book is essentially an apology for evangelical, right-wing Christian social thought. One searches in vain for any critical discussion of the beliefs and values he presents or any thoughtful engagement with those who might view the stances he presents as an assault against women’s rights or an attack on the rights of gays, lesbians, and transsexuals.Moreover, in a book like this, one would have expected a more careful assessment of biblical passages and historical precedents. Thobaben does not provide much rationale for his method for moving from the Bible to current social issues. For example, no prohibition against abortion is found in the Bible and the few passages about homosexual practices hardly add up to the fierce opposition to gays found among strident evangelicals. Moreover, Thobaben does not mention that in 1965 laws against contraceptives were declared unconstitutional by the Griswold vs. Connecticut decision, the Supreme Court’s rejection of a ban supported by an evangelical crusade led by Anthony Comstock. [End Page 204]It is interesting to note that Thobaben holds a strongly qualified commitment to religious liberty and only a “thin” version of the social contract basic to the Bill of Rights (37). He argues that in at least some situations “intolerance is not only morally understandable but strongly preferable,” as in the examples of the “abolition of slavery and prolife/antiabortion advocacy” (29) or, in another context—where he distinguishes between tolerance toward those outside the church and intolerance toward those within it—with regard to homosexuality and alcohol intoxication (30).The task of Christian ethics is to enlighten believers and the general citizenry by a careful exposition of the sources of wisdom available to those who want to think and think morally about issues of importance to human flourishing. That task is especially important in an age of demagogic hostility toward unpopular groups. Sadly, this book does not engage such critical questions. It may prove... (shrink)

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The purpose of this article is to re-visit how rationing is defined for ahealth-care context, Two reasons justify returning to this topic. First, the variability as to how rationing has been defined in the legal, medical, and philosophical literature justifies a careful examination to identify its critical features. Second, I believe that if the definitions typically employed in the literature, several of which are discussed below, are compared to those that would be offered by the American public, (...) ethically weighty dissimilarities would be apparent. Disparate characterizations are worrisome because serious “disconnections” between policymakers’ understandings, rhetoric, and priorities and those of the general public are more likely. (shrink)

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A dominant cultural narrative within Costa Rica describes Costa Ricans not only as different from their Central American neighbours, but it also exalts them as better: specifically, as more white, peaceful, egalitarian and democratic. This notion of Costa Rican exceptionalism played a key role in the creation of theirhealthcare system, which is based on the four core principles of equity, universality, solidarity and obligation. While the political justification and design of the currenthealthcare (...) system does, in part, realize this ideal, we argue that the narrative of Costa Rican exceptionalism prevents the full actualization of these principles by marginalizing and excluding disadvantaged groups, especially indigenous and black citizens and the substantial Nicaraguan minority. We offer three suggestions to mitigate the self-undermining effects of the dominant national narrative: 1) encouragement and development of counternarratives; 2) support of an emerging field of Costa Rican bioethics; and 3) decouplinghealth and national successes. (shrink)

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This study investigates how social franchises extendhealthcare in rural areas, thus addressing vast and persistentdisparities inhealthcare access. We conducted an inductive study of Unjani, a South African organization that extended primaryhealth services to disadvantaged rural communities through a network of 135health clinics. Our analysis focused on the process of impact intermediation—the propagation of impact across multiple layers of the franchise network, including franchisees and downstream beneficiaries. To (...) facilitate impact intermediation, the franchisor harmonized the mission of the franchisees with its own mission and integrated community impact among franchisees. Such coordination and monitoring activity exposed franchisees to intermediation problems in the form of mission conflict and impact divergence. Our analysis reveals how Unjani nurtured network stewardship that afforded the franchisee nurses with greater support, autonomy, and ownership, thus overcoming intermediation problems in their pursuit of shared communal responsibilities to extendhealthcare to rural communities. (shrink)

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As this nation embarks on new efforts to reform the U.S.health system, we face a critical unfinished agenda from the mid- 1960s: persistent racial, ethnic, and socioeconomicdisparities inhealth andhealthcare. Medicaid, Medicare, and CommunityHealth Centers — public programs with very different legislative histories and financing mechanisms — were the first federally funded, nationwide efforts to improvehealthcare access for low-income and elderly Americans. Members of racial and (...) ethnic minority groups also greatly benefited from these efforts because recipients of federal funds, such as Medicare, were required to comply with the newly passed Civil Rights Act of 1964, which barred racial discrimination. Unquestionably, government played a major role in the gains inhealthcare access that have occurred in the last half century. Yet today all Americans do not have the same opportunities forhealth, access tocare, or quality ofcare when they receive it. (shrink)

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Recent developments in organ procurement have revived the much-debated role of markets in ourhealthcare system. The unique Americanhealthcare system, with its presumption of universality alongside privatehealth insurance and relatively limited federal and state programs, is in many ways consumer-driven today. We certainly tolerate more broaddisparities in availability ofcare and in outcomes ofcare largely based on socioeconomic status than do many other developed countries, where notions (...) of universal access are supported by broader public financing. (shrink)

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Controversy exists over how to ethically distributehealthcare resources and which factors should determine access tohealthcare services. Although the US has traditionally used a market-based private insurance model that does not ensure universal coverage, the Patient Protection and AffordableCare Act in the United States aims to increase equitable access tohealthcare by increasing the accessibility, affordability, and quality ofhealthcare services. This article evaluates the impact (...) of the ACA on equitable mentalhealthcare delivery according to access factors that can hinder or facilitate the delivery of mentalhealth services based on need. The ACA has successfully expanded coverage to millions of Americans and promoted coordination and access to mentalhealthcare; however, financial and non-financial access barriers to mentalhealthcare and accessdisparities remain. Reform efforts should not undervalue the gains that the ACA has made but should attempt to balance considerations of cost and increasing free-market mechanisms with decreasing remaininghealthcaredisparities. (shrink)

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There is a vast amount of evidence across countries that the use ofhealthcare services (including hospitalizations, physician services, and clinical preventive services) is positively associated with income, education and other markers of socioeconomic position. In some analyses, lower socioeconomic status (SES) is associated with greater physician and hospital use, although it appears that these findings are primarily driven by higher rates of poorhealth status or medical need in socioeconomically disadvantaged populations. Three general sets of (...) explanations have been investigated to explain SES differences inhealthcare use: (1) financial access or affordability differences (e.g. the poor use fewer services because they have fewer financial means); (2) knowledge, attitudinal and cultural differences in seekingcare (e.g. the poor use fewer services because they value and/or understand the benefits ofhealthcare less than other people); and (3)healthcare system factors (e.g. the poor use fewer services because of ways in which thehealthcare system is organized). The empirical evidence from a number of countries suggests thathealthcare system variables, especially non-financial components of access, offer the greatest explanatory power regarding SES differences in utilization. The policy implications of such findings are important, for they suggests that providing universal coverage or offering freehealth services to the poor is not a panacea for reducing social inequalities inhealthcare utilization. Research across countries also suggests that, although SES differences in the use ofhealthcare services may contribute to some portion of observed SESdisparities inhealth status, the contribution here is likely to be small. Social inequalities inhealth status are driven by myriad factors other than access to and use of personalhealth services. (shrink)

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Ashealthcare costs continue to escalate, cost control measures will likely become unavoidable and painful. One approach is to engage external forces to allocate resources - for example, through managedcare or outright rationing. Another approach is to engage consumers to make their own allocation decisions, through "self-rationing," wherein they are given greater awareness, control, and hence responsibility for theirhealthcare spending. Steadily gaining popularity in this context is the concept of "consumer directed (...)healthcare" (CDHC), which is envisioned to both control cost and enhance choice, by combining financial incentives with information to help consumers make more informedhealthcare decisions and to appreciate the economic trade-offs of those decisions. While CDHC is gaining attention in the popular press, business publications, and academic journals, it is not without controversy about its relative merits and demerits. CDHC raises questions regarding the ethical limits of consumer responsibility for their choices. While the emphasis on consumer choice implies that autonomy is the ruling ethical principle in CDHC, it must be tempered by justice and beneficence. Justice must temper autonomy to protect disadvantaged populations from further wideningdisparities inhealthcare access and outcomes that could arise fromhealthcare reform efforts. Beneficence must temper autonomy to protect consumers from unintended consequences of uninformed decisions. Thoughtful paternalism suggests that CDHC plans offer choices that are comprehensible to lay consumers, limited in their range of options, and carefully structured with default rules that minimize potential error costs. (shrink)

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In order to assure optimalcare of patients with chronic illnesses, it is necessary to take into account the cultural factors that may influencehealth-related behaviors,health practices, andhealth-seeking behavior. Despite the increasing number of Romanian Roma, research regarding their beliefs and practices related to healthcare is rather poor. The aim of this paper is to present empirical evidence of specificities in the practice of healthcare among Romanian Roma patients and their caregivers. Using a qualitative (...) exploratory descriptive design, this study is based on data gathered through three focus groups with 30health mediators in the counties of Iasi and Cluj (Romania). We identified various barriers to access to healthcare for Roma patients: lack of financial resources andhealth insurance coverage, lack of cognitive resources or lack of personal hygiene, but also important cultural issues, such as the shame of being ill, family function, disclosure of disease-related information, patient’s autonomy, attitudes towards illness andhealth practices, that should be considered in order to create a culturally sensitive environment in Romanian medical facilities:… The role of thehealth mediators within the context of cultural diversity is also discussed, as cultural brokers contributing tohealthcare quality among Romanian Roma patients Bridging cultural differences may improve patient–healthcare provider relationships, but may have limited impact in reducing ethnicdisparities, unless coupled with efforts of Roma communities to get involved in creating and implementinghealth policies. (shrink)

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Catholichealthcare is one of the key places where the church lives Catholic social teaching (CST). Yet the individualistic methodology of Catholic bioethics inherited from the manualist tradition has yet to incorporate this critical component of the Catholic moral tradition. Informed by the places where Catholichealthcare intersects with the diverse societal injustices embodied in the patients it encounters, this book brings the lens of CST to bear on Catholichealthcare, illuminating (...) a new spectrum of ethical issues and practical recommendations from social determinants ofhealth, immigration, diversity anddisparities, behavioralhealth, gender-questioning patients, and environmental and globalhealth issues. (shrink)

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Although thousands of articles and books appear annually in the field of nursing ethics, the sheer volume of scholarly publications points to the need to provide assessment and focus, and that is what this book offers. Nursing and Healthcare Ethics documents the work of nurse scholars in ethics, and goes well beyond a mere documentation of what has transpired and a list of what can be done in the future. It creatively looks back to assess previous accomplishments and forward to (...) find new directions and strengthen future scholarly contributions in nursing ethics. Critical thinking activities, organized by the book s themes (such as vulnerability,care and caring, diversity and disparity, and pain and suffering) are examples of applying these scholarly insights into practice. This book is intended not only for undergraduate and graduate students in academic settings, but also for those in professional development programs. (shrink)

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Scholars increasingly point toward schools as meaningful contexts in which to provide psychosocialcare for refugee children. Collaborative mentalhealthcare in school forms a particular practice of school-based mentalhealthcare provision. Developed in Canada and inspired by systemic intervention approaches, collaborative mentalhealthcare in schools involves the formation of an interdisciplinarycare network, in which mentalhealthcare providers and school partners collaborate with each other and the (...) refugee family in a joint assessment of child development and mentalhealth, as well as joint intervention planning and provision. It aims to move away from an individual perspective on refugee children’s development, toward an engagement with refugee families’ perspectives on their migration histories, cultural background and social condition in shaping assessment and intervention, as such fostering refugee empowerment, equality, and participation in the host society. Relating to the first stage of van Yperen’s four-stage model for establishing evidence-based youthcare, this article aims to engage in an initial exploration of the effectiveness of a developing school-based collaborative mentalhealthcare practice in Leuven, Belgium. First, we propose a detailed description, co-developed through reflection on case documents, written process reflections, intervision, an initial identification of intervention themes, and articulating interconnections with scholarly literature on transcultural and systemic refugee traumacare. Second, we engage in an in-depth exploration of processes and working mechanisms, obtained through co-constructed clinical case analysis of case work collected through our practice in schools in Leuven, Belgium. Our descriptive analysis indicates the role of central processes that may operate as working mechanisms in school-based collaborative mentalhealthcare and points to how collaborative mentalhealthcare may mobilize the school and the family-school interaction as a vehicle of restoring safety and stability in the aftermath of cumulative traumatization. Our analysis furthermore forms an important starting point for reflections on future research opportunities, and central clinical dynamics touching upon powerdisparities and low-threshold access to mentalhealthcare for refugee families. (shrink)

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This narrative provides insight into medical education for Black physicians in South Carolina in the 1960s, during the civil rights movement. It also discusses the many rewards and challenges of being a physician of color, describes what has been done to develop programs that benefit minority communities, and argues that more such programs are needed.

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According to HealthCare.gov, by improving access to qualityhealth for all Americans, the AffordableCare Act (ACA) will reducedisparities inhealth insurance coverage. One way this will happen under the provisions of the ACA is by creating a newhealth insurance marketplace (ahealth insurance exchange) by 2014 in which “all people will have a choice for quality, affordablehealth insurance even if a job loss, job switch, move or illness occurs”. This (...) does not mean that everyone will have whatever insurance coverage he or she wants. The provisions of the ACA require that each of the four benefit categories of plans (known as bronze, silver, gold and platinum) provides no less than the benefits available in an “essentialhealth benefits package”. However, without a clear understanding of what criteria must be satisfied forhealthcare to be essential, the ACA’s requirement is much too vague and open to multiple, potentially conflicting interpretations. Indeed, without such understanding, in the rush to providehealth insurance coverage to as many people as is economically feasible, we may replace one kind of disparity (lack ofhealth insurance) with another kind of disparity (lack of adequatehealth insurance). Thus, this paper explores the concept of “essential benefits”, arguing that the “essentialhealth benefits package” in the ACA should be one that optimally satisfies the basic needs of the people covered. (shrink)

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Older minority Americans experience worsehealth outcomes than their white counterparts, exhibiting the need for social justice in all areas of theirhealthcare. Justice, fairness, and equity are crucial to minimizing conditions that adversely affect thehealth of individuals and communities. In this paper, Alzheimer's disease (AD) is used as an example of ahealthcare disparity among elderly Americans that requires social justice interventions. Cultural factors play a crucial role in AD screening, (...) diagnosis, and access tocare, and are often a barrier to support and equality for minority communities. The “conundrum ofhealthdisparities” refers to the interplay between disparity, social justice, and cultural interpretation, and encourages researchers to understand both (1) disparity caused by economic and structural barriers to access, treatment, and diagnosis, and (2) disparity due to cultural interpretation of disease, in order to effectively addresshealthcare issues and concerns among elderly Americans. (shrink)

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Over the past two decades, we have seen an increase in the use of medical-legal partnerships inhealth-care and/or legal settings to addresshealthdisparities affecting vulnerable populations. MLPs increase medical teams' capacity to address social and environmental threats to patients'health, such as unsafe housing conditions, through partnership with legal professionals. Following the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines, we systematically reviewed observational studies published from January 1993-January 2016 to investigate the (...) capacity of MLPs to address legal andhealthdisparities. We identified 13 articles for qualitative analysis from an initial pool of 355 records. The resulting pool of 13 articles revealed more information regarding the capacity of MLPs to address legal outcomes than their capacity to addresshealth outcomes; only 4 studies directly addressed the impact of MLP intervention on patient wellbeing and/or patient utilization of healthcare services. We call for further evaluation/longitudinal studies that specifically address MLPs' short and long term effects upon patienthealthdisparities. Finally, given the demonstrated capacity of MLPs to address unmet legal needs, and their evident potential in regards to improvinghealth outcomes, we present the MLP model as a framework to address HIV-related legal andhealthdisparities. (shrink)

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The internationaldisparities inhealth andhealth-care provision comprise the gravest problem of medical ethics. The implications are explored of three theories of justice: an expanded version of Rawlsian contractarianism, Nozick's historical account, and a consequentialism which prioritizes the satisfaction of basic needs. The second too little satisfies medical needs to be cogent. The third is found to incorporate the strengths of the others, and to uphold fair rules and practices. Like the first, it also involves (...) obligations transcending those to an agent's relations and fellow-citizens. These conclusions are applied to internationalhealth-care provision, which they would transform. (shrink)

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If you are black, you are more likely to get inferiorhealthcare than if you are white. And if you are Hispanic or Native American, odds are you're also in trouble. So finds the Institute of Medicine report, Unequal Treatment: Confronting Racial and EthnicDisparities inHealthCare.

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Artificial intelligence holds great promise for improvedhealth‐care outcomes. But it also poses substantial new hazards, including algorithmic discrimination. For example, an algorithm used to identify candidates for beneficial “high riskcare management” programs routinely failed to select racial minorities. Furthermore, some algorithms deliberately adjust for race in ways that divert resources away from minority patients. To illustrate, algorithms have underestimated African Americans’ risks of kidney stones and death from heart failure. Algorithmic discrimination can violate Title VI (...) of the Civil Rights Act and Section 1557 of the AffordableCare Act when it unjustifiably disadvantages underserved populations. This article urges that both legal and technical tools be deployed to promote AI fairness. Plaintiffs should be able to assert disparate impact claims inhealth‐care litigation, and Congress should enact an Algorithmic Accountability Act. In addition, fairness should be a key element in designing, implementing, validating, and employing AI. (shrink)

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Starkdisparities exist in the United States'healthcare system. Thirty-five million Americans are uninsured, severely impeding their access to necessaryhealthcare. Concurrently, others receivehealthcare services that are of unproven necessity and benefit. We assert that this situation is unjust and morally indefensible.

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Catholichealthcare has long been a key place where the Church embodies its social doctrine. However, the moral methodology that shapes Catholic bioethics relies on an act-based approach to decision making, which is rooted in the pre–Vatican II manualist tradition, focusing primarily on clinical issues related to the beginning and end of life. This essay argues that given the doctrinal status of Catholic social thought, Catholic bioethics must revisit its scope and methodology. It proceeds in three steps: (...) a meta-analysis of traditional Catholic bioethics, validating the claim made above; an overview of the limited literature published since 1980 engaging Catholic bioethics and CST; and a map of a Catholic bioethics informed by CST generated from a dual starting point. The essay concludes by focusing on both the places where marginalized persons encounter Catholichealthcare and the ethical issues presented, including race,healthcaredisparities, immigration status, and gender inequality, as well as the interrelated perspective of the common good, expanding the array of issues to include environmental degradation, unions,healthcare financing, and more. (shrink)

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Socialhealthdisparities are increasing in most countries around the world. During the past two decades, a large amount of evidence has emerged about thehealth consequences of social inequalities. Despite such evidence, the concept of medical fairness, as traditionally defined by the World Medical Association, has remained unchallenged and even reinforced by some scholars who emphasize that doctors should remain neutral to the socioeconomic status of their patients when providing clinicalcare. The inconsistency between public (...)health and clinicalcare perspectives raises tension between a narrow interpretation of the ethics of justice, which stresses the importance of equality and impartiality, and the ethics ofcare, which highlights the importance of particularity and individuality in clinical practice. This article analyzes the concept of medical fairness using the emerging evidence that demonstrates the impact of socialhealthdisparities on clinicalcare. It proposes a new approach of medical fairness based on equity rather than on equality and provides a consistent ethical framework based on Paul Ricoeur’s three levels of medical judgments. This integrative framework provides a better balance between publichealth and clinicalcare in medical practice. (shrink)

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Genomics is increasingly becoming an integral component ofhealth research and clinicalcare. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existinghealthdisparities unless urgent action is taken. To allow the (...) potential benefits of genomics to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines ofhealth services and research projects. (shrink)

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In lieu of an abstract, here is a brief excerpt of the content:Introduction:DevelopingHealthCare in Severely Resource-Constrained SettingsPaul Farmer and Sadath SayeedThis symposium of Narrative Inquiry in Bioethics catalogues the experiences ofhealthcare providers working in resource-poor settings, with stories written by those on the frontlines of globalhealth. Two commentaries by esteemed scholars Renee Fox and Byron and Mary-Jo Good accompany the narratives, helping situate the lived experiences of globalhealth practitioners (...) within the frameworks of sociology and medical anthropology respectively.The burgeoning interest in globalhealth among students,health science trainees, clinical practitioners, social entrepreneurs, philanthropists, and government officials is often linked with substantial moral claims. People working in globalhealth often start with the rhetorical premise that each and every human being, regardless of economic, social, or political circumstances that lie beyond his or her control, deserves equal access to qualityhealthcare services. This is a bold position at risk of trivialization, in part because the sentiment is so commonplace among globalhealth equity activists.Despite this relatively recent global outpouring of solidarity and concern, billions of poor people still lack access to basichealth services. All too often, interventions that perpetuate existing trade practices and market economics are promoted, usually to the detriment of the poor. As our good friend and colleague Arthur Kleinman warns:The irrelevance of ethics can be seen when considering universal ethical formulations of justice and equity that do not begin with the local moral conditions of poor people, those experiencing the systematic injustice of higher disease rates and fewerhealth-care resources because of their positioning at the bottom of local social structures of power.(1999, p.72)If we are serious about reducinghealthdisparities globally, we must be prepared to mobilize resources in Africa just as we would in the United States or in Europe. If we fetishize cost-effective (read: low-cost) interventions for the poor, we must ask whether we use the same metrics in other situations. In other words, we must always strive to address the fundamental structural and social causes ofhealth inequity.We believe that globalhealth must avoid the "iron cage of rationality," to use sociologist Max Weber's words. One unanticipated consequence of the growth of globalhealth as a field is that the "audit culture"—which encourages accountability and effectiveness—can at times reinforce power differentials between donors (whether government agencies or multilateral foundations) and their intended beneficiaries. Agendas are often set not by community members but by globalhealth leaders who rarely demonstrate sustained commitments to a local community. [End Page 73]As the guest editors of this issue, we hope to recapture the soul of globalhealth work through the art of storytelling. Narratives, even when presented as raw and unrefined as many within this issue, remind us of the immense challenges—both programmatic and moral—involved in this work. The profound scarcity of resources available tohealth providers in poor countries forces ethical questions on doctors, nurses, pharmacists, social workers, and otherhealthcare workers, who make difficult choices every day about what to do with the few resources they have. These are the ethical dilemmas of mortal dramas at their most dire. Globalhealth work demands of its practitioners an alternate mode of audit than academic methodologies can provide. Narratives return us to the basic human commitments that led many of us to this work, and they remind us to use words like equality and justice meaningfully.The narratives that follow offer unmitigated perspectives on the working lives of globalhealth practitioners. They highlight the translation of the moral and programmatic challenges ofhealthcare delivery into real choices: for example, between a visiting surgeon's desire to treat a patient and his capacity (or really incapacity) to provide follow-upcare. They acknowledge the necessity of interdisciplinary cooperation in resource-constrained settings, as well as the difficulties in collaborating across cultures and continents. Most importantly, they make the claim that a newborn in distress in a tent in Port-au-Prince merits the same resources and attention as one in Boston, and that his or her death merits the same indignation. They demonstrate the radical solidarity inherent in the... (shrink)

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Thehealthcare industry has moved at a rapid pace away from paper records to an electronic platform across almost all sectors — much of it at the encouragement and insistence of the federal government. Such rapid expansion has increased exponentially the risk to individuals in the privacy of their data and, increasingly, to their physical well-being when medical records are inaccessible through ransomware attacks. Recognizing the unique and critical nature of medical records, the United States Congress established (...) theHealthCare Industry Cybersecurity Task Force under the Cybersecurity Information Sharing Act of 2015 for the purpose of reviewing cybersecurity risks within thehealthcare industry and identifying who will lead and coordinate efforts to address such risks among the various agencies. The Task Force has since issued a report setting forth six high-level imperatives that thehealthcare industry needs to achieve in order to combat cybersecurity, and, notably, many of the vulnerabilities plaguing the industry identified in the Report as requiring correction are not necessarily related to specific flaws in the current cybersecurity framework, but rather susceptibilities presented by the infrastructure and associated regulatory regime that has evolved over the last few decades over thehealthcare industry generally. That is, the currenthealthcare infrastructure by its nature exacerbates cybersecurity risk. Between a lack of information sharing of industry threats, risks, and mitigations, disparate leadership and governance goals for cybersecurity, the confluence and contradiction of existing federal and state laws, fragmentation in the fee-for-service delivery system, lack ofcare coordination, and disparate resources across and among sectors, the industry suffers from heightened cyber risk. Solutions that are reactive to problems within the current infrastructure will likely have little long term impact toward reducing cybersecurity vulnerabilities because they do not address the underlying system challenges. All of these confluences causes one to wonder whether if in fact the currenthealthcare delivery infrastructure is a contributing factor to the incidents of cybersecurity attacks and the exorbitant costs associated with resolving data breaches, should Congress look not just to curb breach incidents, but to address root cause systematic challenges in thehealth industry infrastructure that create increased exposure of cybersecurity threats? This article argues that cybersecurity risks will continue to be heightened and more costly to thehealthcare industry as compared to other industries unless and until some general system redesign is achieved that allows for greater sharing of resources among industry participants to ensure the same protections are implemented at all levels of the industry, which can be strengthened through greater interoperability of systems across thehealthcare industry; and increased focus and attention on the importance of cybersecurity issues as a priority among system reforms. (shrink)

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In today’s globalized world, nations cannot be totally isolated from or indifferent to their neighbors, especially in regards to medicine andhealth. While globalization has brought prosperity to millions,disparities among nations and nationals are growing raising once again the question of justice. Similarly, while medicine has developed dramatically over the past few decades,healthdisparities at the global level are staggering. Seemingly, what our humanity could achieve in matters of scientific development is not justly distributed (...) to benefit everyone. In this paper, it will be argued that a global theoretical agreement on principles of justice may prove unattainable; however, a grass-roots change is warranted to change the current situation. The UNESCO Declaration on Bioethics and Human Rights will be considered as a starting point to achieve this change through extracting the main values embedded in its principles. These values, namely, respecting human dignity and tending to human vulnerability with a hospitable attitude, should then be revived in medical practice. Medical education will be one possible venue to achieve that, especially through role models. Future physicians will then become the fervent advocates for a global and just distribution ofhealthcare. (shrink)

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The pandemic creates unprecedented challenges to society and tohealthcare systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems inhealthcare and deflected attempts to address them. As hospitals begin to welcome all patients back, they should resist the temptation to go back to business as usual. Instead, they should retain (...) the more deliberative, explicit, and transparent ways of thinking that have informed the development of crisis standards ofcare. The key lesson to be learned from those exercises in rational deliberation is that justice must be the ethical foundation of all standards ofcare. Justice demands that hospitals take a safety‐net approach to providing services that prioritizes the most vulnerable segments of society, continue to expand telemedicine in ways that improve access without exacerbatingdisparities, invest in community‐basedcare, and fully staff hospitals and clinics on nights and weekends. (shrink)

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The intensivecare unit, with its structural complexity and the exposure of critically ill patients to variousdisparities, presents a significant setting forhealthdisparities. This critical ethnographic study sought to uncover cultural knowledge and ethical practices for reducinghealthdisparities in providingcare services within the intensivecare unit. The focus was on understanding how ethical considerations and cultural competence can address and mitigate thesedisparities effectively. This critical ethnographic study (...) was conducted in 2022–2023 at intensivecare units in western Iran. Three interrelated phases were used to collect and analyze the data. More than 300 h of observation were done during the first phase. A horizon analysis was carried out in the next phase. To further enhance the dataset, 18 informants participated in semi-structured interviews and informal conversations. Following that, the analysis procedure was conducted to identify a culture ofhealthdisparities and factors that reduce it, as it had been in the prior stage. Trustworthiness data collection methods were implemented to ensure the validity and reliability of the study. Two key themes emerged from the study: (A) Improved cultural competence, which encompassed empathy towards patients and their families, effective communication, prioritization of continuous learning, appropriate knowledge and awareness, sensitivity to cultural and religious beliefs, staff attitude and personality, and the delivery of customizedcare tailored to each patient’s needs. (B) Supporting role and compensating fordisparities involved recommendations for upholding ethical standards, compensatory actions, maintaining professional behavior despite external factors, addressing gaps and deficiencies, and actively defending and supporting patients. The findings indicate that staff with high cultural competence can ethically mitigatehealthdisparities through their supportive roles. Managers andhealth policymakers should create barriers tohealth disparity by improving staff cultural competence and knowledge abouthealthdisparities. (shrink)

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How can researchers use race, as they do now, to conducthealth-care studies when its very definition is in question? The belief that race is a social construct without “biological authenticity” though widely shared across disciplines in social science is not subscribed to by traditional science. Yet with an interdisciplinary approach, the two horns of the social construct/genetics dilemma of race are not mutually exclusive. We can use traditional science to provide a rigorous framework and use a social-science (...) approach so that “invisible” factors are used to adjust the design of studies on an as-needed basis. One approach is to first observehealth-care outcomes and then categorize the outcomes, thus removing genetic differences as racial proxies from the design of the study. From the outcomes, we can then determine if there is a pattern of conceivable racial categories. If needed, we can apply dynamic notions of race to acknowledge bias without prejudice. We can use them constructively to improve outcomes and reduce racialdisparities. Another approach is nearly identical but considers race not at all: While analyzing outcomes, we can determine if there are biological differences significant enough to identify classifications of humans. That is, we look for genetic patterns in the outcomes and classify only those patterns. There is no attempt to link those patterns to race. (shrink)

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While empirical evidence has exposed the harms andhealthdisparities flowing from being denied a wanted abortion, we know less about how anti-abortion laws and policies impacthealthcare more broadly. This article surveys the publichealth impacts of Dobbs onhealthcare beyond wanted abortioncare. The article argues that focusing the public’s attention on the harmful consequences of abortion bans for healthcare beyond wanted abortioncare could help to fend (...) off further restrictions on abortion. (shrink)

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Societies vary in their levels of social inequality and in the degree of popular support for policies that reducedisparities within them. Survey research in Texas, where levels of disparity inhealth and medicalcare are relatively high, studied how psychological mechanisms of moral disengagement relate to public support for expanding access to government-subsidizedhealthcare. Telephone interviews ( N = 1,063) measured agreement with statements expressing tendencies to minimize the effects of inequality, blame its (...) victims and morally justify limits on government help. The interviews also assessed support for general and specific policies to reduce inequality, e.g., through state-subsidizedhealthcare for lower income groups, as well as political party affiliation, ideological orientation, gender, age, education and income. Agreement with beliefs expressing moral disengagement was associated with opposition to governmental policies to reduce inequality in children’shealthcare. Beliefs that justify the withholding of government assistance, blame the victims of societal inequality, and minimize perceptions of their suffering were strongly related to variation between and within groups in support for governmental action to reduce inequality. (shrink)

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This article is guided by principles and practices of bioethics and publichealth ethics focused onhealthcare reform within the context of promoting OptimalHealth. The Tuskegee University National Center for Bioethics in Research andHealthCare is moving beyond the traditions of bioethics to incorporate publichealth ethics and OptimalHealth. It is imperative to remember the legacy of the ill-fated research entitled Tuskegee Study of Untreated Syphilis in the Negro (...) Male. Human participant research andhealthcare must be connected to principles of bioethics and publichealth ethics if the AffordableCare Act is expected to positively impact on thehealth of people living in the United States. OptimalHealth describes a strategy to achieve individual and populationhealth.Healthcare reform offers an opportunity to shift from the traditional pathology focus of managing diseases to target disease prevention andhealth promotion with a new set of tools. Transformational change is possible if the lessons learned from the U.S. PublicHealth Service Syphilis Study at Tuskegee are considered and strategies in bioethics and public heath ethics are employed. (shrink)

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Healthdisparities in primarycare remain a continual challenge for both practitioners and patients alike. Integrating mentalhealth services into routine patientcare has been one approach to address such issues, including access tocare, stigma ofhealth-care providers, and facilitating underserved patients’ needs. This article addresses examples of training programs that have included mentalhealth learners and licensed providers into family medicine residency training clinics. Descriptions of these models at two (...) Midwestern Family Medicine residency clinics in the United States are highlighted. Examples of cross-training both medical residents and mentalhealth students are described, detailing specific areas where this integration improves mentalhealth and medical outcomes in patients. Challenges to effective integration are discussed, including larger system buy-in, medical providers’ knowledge of mentalhealth treatment, and the skills for clinical providers to possess in order to present mentalhealth options to patients. Patients who traditionally experience multiple barriers to mentalhealth treatment now have increased access to comprehensivecare. As a result of more primarycare clinics ascribing to an integratedcare model of practice, providers may benefit from not only increased coordination of patient services but also utilizing behavioralhealth professionals to addresshealth barriers in patients’ lives. (shrink)

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This paper describes the significance of key empirical findings from the recent and landmark study Caring and Aging with Pride: The NationalHealth, Aging and Sexuality Study (with Karen I. Fredriksen‐Goldsen as the principal investigator), on lesbian, gay, bisexual, and transgender aging andhealthdisparities. We will illustrate these findings with select quotations from study participants and show how nonconscious bias (i.e., activation of negative stereotypes outside conscious awareness) in the clinical encounter andhealthcare (...) setting can threaten shared decision‐making and perpetuatehealthdisparities among LGBT older adults. We recognize that clinical ethicists are not immune from nonconscious bias but maintain that they are well situated to recognize bias and resulting injustice by virtue of their training. Further, we discuss how clinical ethicists can influence the organization's ethical culture and environment to improve the quality and acceptability ofhealthcare for LGBT older adults. (shrink)

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