Health is higher on the international agenda than ever before, and improving the health of poor people is a central issue in development. Poor people suffer from far higher levels of ill health, mortality, and malnutrition than do those better off, and their inadequate health is one of the factors keeping them poor or for their being poor in the first place. Health is a crucially important economic asset, particularly for poor people. Their livelihoods depend on it. When poor (...) people become ill or injured, their entire household can become trapped in a downward spiral of lost income and high healthcare costs—a vicious circle of poverty and ill health. (shrink)

Do pharmaceutical companies have a moral obligation to expand access to investigational drugs to patients outside the clinical trial? One reason for thinking they do not is that expanded access programs might negatively affect the clinical trial process. This potential impact creates dilemmas for practitioners who nevertheless acknowledge some moral reason for expanding access. Bioethicists have explained these reasons in terms of beneficence, compassion, or a principle of rescue, but their arguments have been limited to questions of moral permissibility, (...) leaving for future research the question of whether expanded access is morally obligatory. We take up this further question and argue that pharmaceutical companies have a moral obligation to expand access. Our defense is not based on beneficence, compassion, or rescue, but instead on a reciprocal moral expectation resulting from existing social commitments that help ensure a robust pharmaceutical practice within the broader healthcare system. Our aim is to give this obligation, along with several others, a coherent and plausible structure within the wider clinical trial process so that one might better explain the sources of the dilemmas and their possible resolutions. (shrink)

In this editorial essay I explore the possibilities of ‘improvement scholarship’ in order to set the scene for the theme of, and the other papers in, this issue. I contrast a narrow conception of quality improvement research with a much broader and more inclusive conception, arguing that we should greatly extend the existing dialogue between ‘problem-solving’ and ‘critical’ currents in improvement research. I have in mind the potential for building a much larger conversation between those people in ‘improvement science’ who (...) are expressly concerned with tackling the problems facing healthcare and the wider group of colleagues who are engaged in health-related scholarship but who do not see themselves as particularly interested in quality improvement, indeed who may be critical of the language or concerns of QI. As one contribution to that conversation I suggest that that the increasing emphasis on theory and rigour in improvement research should include more focus on normative theory and rigour. The remaining papers in the issue are introduced including the various ways in which they handle the ‘implicit normativity’ of QI research and practice, and the linked theme of combining relatively ‘tidy’ and potentially ‘unruly’ forms of knowledge. (shrink)

Social work and bioethics are fields deeply committed to cross-disciplinary collaboration to do their respective work. While scholars and practitioners from both fields share a commitment to social justice and to respecting the dignity, integrity and the worth of all persons, the overlap between the fields, including shared values, has received little attention. The purpose of this article is to describe the ways in which greater collaboration between the two fields can broaden their scope, enrich their scholarship, and better (...) ground their practice. We describe the potential for realizing such benefits in two areas – health care ethics consultation and social inequalities in health – arguing that the fields both complement and challenge one another, making them ideal partners for the interdisciplinary inquiry and problem-solving so often called for today in health and health care. (shrink)

This book focuses on justice and its demands in the way of providing people with medical care. Building on recent insights on the nature of moral perceptions and motivations from the neurosciences, it makes a case for the traditional medical ethic and examines its financial feasibility. The book starts out by giving an account of the concept of justice and tracing it back to the practices and tenets of Hippocrates and his followers, while taking into account findings from the neurosciences. (...) Next, it considers whether the claim that it is just to limit medical care for everyone to some basic minimum is justifiable. The book then addresses finances and expenditures of the US health care system and shows that the growth of expenditures and the percentage of the gross national product spent on health care make for an unsustainable trajectory. In light of the question what should be changed, the book suggests that overdiagnosis and medicalizing normal behavior lead to harmful, costly and unnecessary interventions and are the result of unethical behavior on the part of the pharmaceutical industry and extensive ethical failures of the FDA. The book ends with suggestions about what can be done to put the U.S. health care system on the path to sustainability, better medical care, and compliance with the demands of justice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Women, Ethics, and Inequality in US Healthcare: “To Count among the Living” by Aana Marie Vigen, and: New Feminist Christianity: Many Voices, Many Views ed. by Mary E. Hunt and Diann L. NeuKelly Denton-BorhaugWomen, Ethics, and Inequality in US Healthcare: “To Count among the Living” By Aana Marie Vigen NEW YORK: PALGRAVE MACMILLAN, 2011. 304 PP. $31.11New Feminist Christianity: Many Voices, Many Views Edited by Mary (...) E. Hunt and Diann L. Neu WOODSTOCK, VT: SKYLIGHT PATHS, 2010. 384 PP. $24.99In this age of the Supreme Court Hobby Lobby decision, which declared that corporation owners’ religious commitments could provide a basis for denial of their employees’ critical reproductive health insurance benefits (with particular impact on the lives of women), ethical investigation of medical sociology, theology, and the realities of women’s lives is more important than ever. Originally released in 2006, Aana Marie Vigen’s Women, Ethics, and Inequality in US Healthcare makes important headway through these complex waters. And for this volume in the Palgrave Macmillan Series on Black Religion / Womanist Thought / Social Justice, editors Dwight N. Hopkins [End Page 202] and Linda E. Thomas set forth the goal to “pioneer conceptual work and boundary-pushing effort engaging Black Religion or Womanist thought, and social justice” (xiv).Rereleased in paperback in 2011 with a new preface, Vigen’s updated health statistics reveal how racial-ethnic minorities “continue to be overrepresented among the ranks of the uninsured and/or of those living in poverty” (xliii). Her project is to better understand what enables and perpetuates this inequitable distribution and oppression, and to suggest methods of redress and reform. But in order to accomplish any of this, society in general and especially those with socioeconomic power—including administrative leaders in health care, medical providers, and ethicists—need to listen much more deeply to the stories of those who are most vulnerable and are being most negatively affected by current health care systems and practices. For Vigen, this meant a decision to focus on in-depth interviews with eight black and Latina women with breast cancer, in addition to six health care providers.With this method, Vigen pursues a very ambitious goal to, as she puts it, “begin a conversation among several distinct dialogue partners: medical sociology, biomedical ethics, ethnography, theology, and feminist social ethics” (5). She uses a “reflexive” practice, striving for openness to the new insights and ideas that emerged from this creative, multidisciplinary encounter. However, even before launching her interviews, her analysis of the process to seek approval from the Institutional Research Board illustrates the “clash of cultures” she would encounter, as she writes, “one cannot take for granted that others will share the view that women of color are able to speak truth in their own right and out of their own experiences—without comparison to others—about human personhood, dignity, and adequate healthcare quality” (107). It is to Vigen’s credit that she remained undeterred; if anything, the struggle she encountered with powerful leaders helped to confirm and focus the value of this work: not to tell every story, “but to tell a few with care and attention to detail” (108).Vigen’s ethnographical method makes it possible for her to illuminate and address not only stark inequities but also much subtler dynamics of racism combined with socioeconomic discrimination. Along the way, she illustrates a wide variety of experiences of oppression. In contrast to the experience of white patients, these female patients of color tended to be sent to the accounting/financing office before being allowed to see the doctor (144). Though white patients may express strong emotions in medical settings, some women of color felt pressured to reassure white doctors that they could be rational and not overly emotional (141). Socioeconomic and racial discrimination often reinforced one another in these settings. Perhaps most alarming, Vigen notes, the white care providers she interviewed seemed to be very unconscious of [End Page 203] their own racial identity and its role in medical care encounters (165). Her final chapter concludes with a series of immensely practical ethical mandates that would help alter these oppressive patterns. Clergy, students of ethics, and anyone... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Microaggressions in Medicine:Narratives, Trauma, and SilenceElizabeth Lanphier (bio)Lauren Freeman and Heather Stewart (2024) have written a richly researched and argued, while also highly engaging and accessible, book with Microaggressions in Medicine. They argue for why microaggressions are best understood on a harm-based account and situate this view within timely examples from a range of healthcare experiences. In their view, focusing on the harms produced by microaggressions shifts the (...) locus of concern from the agent committing a microaggression to the agent receiving it, and it enables an attribution of a microaggression regardless of an agent's intent or even awareness.Freeman and Stewart leave the reader with an expanded understanding of what microaggressions are and how they function. They also offer concrete and actionable suggestions for how healthcare environments and healthcare providers can work to prevent patients from receiving microaggressions in clinical care. Thinking alongside this book, I raise three points intended to further a conversation. The first is about narrative medicine as an additional resource. The second is the possibility for trauma-informed care to address background structural conditions that were beyond the book's scope. The third is to briefly inquire about whether this harm-based account could characterize certain cases of individual and institutional silence as a microaggression.1. Narrative medicineFreeman and Stewart situate their book within the philosophical literature on epistemic injustice, social justice, and feminist theory. So, it is not necessarily surprising that they only mention "narrative medicine," a term coined by Rita Charon (2001) about twenty-five years ago, in passing. They do cite core narrative medicine literature, including Sayantani DasGupta's (2008) account of "narrative humility," Arthur Frank's (1995) book The Wounded Storyteller, and a paper on listening to patient stories (Goldie 2011) in their recommendations and resources for mitigating microaggressions. When they do reference narrative [End Page 163] medicine, it is to suggest that "attending to the identities of patients ought to be more widely recognized as constitutive of good care" (Freeman and Stewart 2024, 182). But beyond illustrating the caring capacities of compassionate and skilled clinicians, narrative medicine offers a potential roadmap for how to get there.What I have elsewhere called a "technical definition of narrative medicine" (Lanphier 2021, 2024) is the narrative medicine methodology of close reading and reflective writing intended to produce three aims: attention (to texts or story), representation (trying to see the perspective of a story), and affiliation (partnering with a story's teller in a solidaristic way). This technical understanding of narrative medicine provides a method for developing skills of "ethical listening" and "medical humility" that Freeman and Stewart recommend. It also affords a structured form of training and practice that institutions can support to better enable healthcare workers to implement individual and environmental correctives to address microaggressions.Although narrative medicine is a resource poised to counter and respond to the very kinds of failures of listening, epistemic injustices, and quick assumptions with which Freeman and Stewart are concerned, narrative practices are not necessarily a fix for epistemic failures or bias. They also run their own risks, including narrative presumptions (Lanphier and Anani 2019), or narrative neglect (Saulnier 2020). Moreover, while the potential exists to scale narrative medicine through structured learning opportunities and broader institutional support, it primarily remains a tool for individual edification and enactment, not systems change.2. Trauma-informed careFreeman and Stewart (2024) describe how "microaggressions occur at the individual level and can be perpetrated by individuals, environments, or institutions" but that "ultimately, they are manifestations or symptoms of structural-level problems. Regardless of the level on which they occur, microaggressions always happen against the backdrop of social and structural oppression" (12). As other commentators point out, the authors recommend correctives primarily at individual and environmental levels (i.e., changing individual behaviors, making small modifications to clinical environments). Freeman and Stewart understand the limits of this scope, saying, "[W]e are well aware that such individual-level fixes can only ever take us so far and that they alone will never dismantle the oppressive structures themselves" (13). It is reasonable to identify achievable individual actions for the "unjust meantime" (Jaggar 2019) concurrent with social and structural... (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake rates are (...) not intrinsically desirable or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

:The available treatments for disorders affecting large segments of the population are often costly, complex, and only marginally effective, and many have numerous side effects. These disorders include dementias, debilitating neurological disorders, the multiple types of drug addiction, and the spectrum of mental health disorders.Preliminary studies have shown that a variety of psychedelic and similar U.S. Drug Enforcement Administration Schedule I drugs may offer better treatment options than those that currently exist and pose potentially the same or even less (...) risk than do legal psychoactive and nonpsychoactive substances. The pharmaceutical industry and academia, however, have largely avoided this avenue of research.Fairness to the affected populations demands that these drugs be adequately studied and, if they or their congeners are shown to be effective, made available with the proper caveats, instructions, and protections that other potentially abused medications receive. These substances may prove to relieve patients’ struggles with less effective treatments and decrease mortality from nontreatment of some conditions. (shrink)

Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research (...) ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics. (shrink)

We argue that the American Society for Bioethics and Humanities has endorsed a facilitation approach to clinical ethics consultation that asserts that bioethicists can offer moral recommendations that are well-grounded in bioethical consensus. We claim that the closest thing the field currently has to a citable, nationally endorsed bioethical consensus are the 22 Core References used to construct the questions for the Healthcare Ethics Consultant-Certified (HEC-C) exam. We acknowledge that the Core References reflect some important points of bioethical consensus, (...) but note they are unwieldy, repetitive, and sometimes inconsistent on important issues faced by clinical ethicists. In this article, we draw carefully qualified inspiration from the Ethical and Religious Directives for Catholic Health Care Services (ERDs) to argue for the creation of a concise, nationally endorsed bioethical consensus document on moral issues commonly faced in clinical ethics, what we call the Standardized Ethical Guidelines for Secular Health Care Services (SEGs). We observe that such a document would better meet the expectations of stakeholders, clinical ethicists, and their trainees who desire moral recommendations grounded in a clearly articulated bioethical consensus, and we defend the SEGs from some common objections. (shrink)

Healthcare organizations and workers are under pressure to produce increasingly complete and accurate data for multiple data-intensive endeavors. However, little research has examined the emerging occupations arising to carry out the data work necessary to produce “improved” data sets, or the specific work activities of these emerging data occupations. We describe the work of Clinical Documentation Integrity Specialists, an emerging occupation that focuses on improving clinical documentation to produce more detailed and accurate administrative datasets crucial for evolving data-intensive forms (...) of healthcare accountability, management, and research. Using ethnographic methods, we describe the core of CDIS’ work as a translation practice in which the language, interests, and concerns of clinicians and clinical documentation are translated via real-time “nudging” and ongoing education of clinicians into the language, interests, and concerns of medical coders, structured administrative datasets, and the various stakeholders of these datasets. Further, we show how the institutional context of CDIS’ work shapes the occupational virtues that guide CDIS’ translation practice, including financial reimbursement, quality measures, clinical accuracy, and protecting clinician’s time. Despite the existence of these multiple virtues, financial reimbursement is the most prominent virtue guiding CDIS’ limited attention. Thus, overall clinical documentation is “improved” in specific, partial ways. This research provides one of the first studies of the emergent data work occupations arising in the wake of digitization and big data opportunities, and shows how local data settings shape large scale data in specific ways and thus may influence outcomes of analyses based on such data. (shrink)

It is reported that medical students both in the U.S. and Poland have experience of interacting with pharmaceutical company representatives (pharma reps) during their school years. Studies have warned that the interaction typically initiated by the pharma reps’ general gift-giving eventually leads to the quid pro quo relationship between the pharma company and the future doctors, the result of which is that the doctors will prescribe their patients drugs in favor of the pharma company. Built upon the existing finding, (...) this research engages in analysis with three foci. The first is to compare attitudinal differences of the American and Polish medical students as they interact with pharma reps. Second, it investigates the role of the different economic and cultural elements (respectively in the U.S. and Poland) in the students’ attitudinal differences. Last, it suggests that the medical schools in both countries should have strict policies and effective education curriculum to help their students better prepare to interact ethically with pharma reps. Since there has been no direct comparative cultural analysis of this kind which is known in a published literature or report, the authors believe that the paper will serve as a catalyst for further research in the area. (shrink)

Pharmaceutical sales representatives (PSRs) are one of the most frequently used drug information sources for physicians in both the United States and China. During face-to-face interactions, PSRs use various promotional strategies to impact the prescribing behavior. In the United States, PSRs provide physicians small gifts, free drug samples, and “sincere friendships”, whereas in China, they played an indispensable role in medical corruption over the past three decades. To cope with the undue influence of PSRs, both these countries have taken (...) positive but insufficient measures to eliminate the effect thus far. By comparing the strategies of American and Chinese PSRs, it was found that building a friendly personal relationship with physicians in a relatively closed private environment (such as physician’s office) is a key factor to exert an individualized influence on physicians, even in different social backgrounds and healthcare contexts. Therefore, this essay suggests that it is necessary to limit the establishment of personal relationships and maintain a more professional interaction to reduce the personalized psychological and emotional influences on physicians’ professional judgment. To achieve this goal, it is proposed to transfer the physician-PSR interaction to a professional public space as a supplement to current countermeasures and suggestions. The presence of others and the possibility of third party participation will stimulate more ethical and reputational concerns. It is hoped that the increased transparency of the interaction will promote participants to consider more professional norms and mitigate the undue influence of PSRs’ individualized strategies. (shrink)

Pharmaceuticals are present in various water sources used by wildlife and as drinking water for humans. Research shows that certain pharmaceuticals, sold over the counter and by prescription only, can harm wildlife. Moreover, the human ingestion of water contaminated by polypharmacy presents a potential cause for concern for human health. Despite the wide scope of this problem, environmental bioethics has not adequately engaged with this topic and, instead, has concerned itself with healthcare waste products more generally. The present essay (...) calls for more ethical investigation on the topic. (shrink)

Relationships, jobs, and health behaviors-these are what New Year's resolutions are made of. Every year millions resolve to adopt a better diet, exercise more, become fit, or lose weight but few put into practice the health behaviors they aspire to. For those who successfully begin, the likelihood that they will maintain these habits is low. Healthcare professionals recognize the importance of these, and other, health behaviors but struggle to provide their patients with the tools necessary for successful maintenance (...) of their medical regimens. The thousands of research papers that exist on patient adherence and health behavior change can leave professionals overwhelmed. This book synthesizes the results from more than 50 years of empirical research, resulting in simple, powerful, and practical guidance for health professionals who want to know the most effective strategies for helping their clients to put long-term health-relevant behavior changes into practice. It advocates a straightforward 3-ingredient model: Before a person can change, they must know what change is necessary ; desire the change ; and then have the tools to achieve and maintain the change. This book is designed to be informative and compelling, but its numerous anecdotes and examples render it engaging and entertaining, as well. Written for a practitioners and students of medicine, chiropractic, osteopathy, nursing, health education, physician assistant programs, dentistry, clinical and health psychology, marriage and family counseling, social work, school psychology, and care administrators -- and for lay persons who wish to take an active role in their health, this book brings together major empirically-based findings within the field and provides succinct, evidence-based recommendations and strategies for using these findings to make real changes. (shrink)

This article aims to highlight the healthcare issues raised by COVID-19 in Pakistan’s scenario. Initially, Pakistan lacked “standard operating procedures,” and the government had to ship testing kits from China and Japan. Moreover, due to violations of the lockdown and standard operating procedures (SOPs), the rapidly increasing number of cases created a burden on the healthcare system. More and more, this pandemic and its impact have grown. As vaccine development has not been successful yet, “herd immunity” can only (...) be achieved if about three quarters of the population contract the virus—requiring immuno￾compromised citizens to be sacrificed for the sake of the country. Moreover, Pakistan has limited testing capacity, so most COVID-19 tests are missing their mark even as the virus spreads. The current scenario is also raising several concerns about the capacity of the government to tackle the prevailing healthcare crisis. In this regard, healthcare professionals suggest that the government must act responsibly to ensure better security provided to healthcare professionals. Identifying suspected cases, introducing personal protective equipment, and taking administrative measures to ensure that better security is provided to healthcare professionals are the needs of the hour to improve outcomes of COVID-19 patients. Testing, tracking, and lockdowns must be focused on areas where clusters are detected. The healthcare professionals must be given utmost protection before this pan￾demic could wreak havoc in terms of fatalities. Investing in the chronically underfunded healthcare system is needed, so that Pakistan can build capacity to fight the pandemic. (shrink)

In this paper, I consider how trust affects the decisions of men who have sex with men (MSM) around using pre-exposure prophylaxis (PrEP) as HIV prevention in their sexual and romantic relationships, and how the use of PrEP affects their relationships with healthcare providers. MSM have to trust their sexual and romantic partners as well as their healthcare providers for PrEP to be successful as a relatively new HIV prevention strategy. This trust includes both interpersonal trust and (...) institutional trust and it is complicated by different kinds of relationship dynamics and the history of prejudice against MSM in healthcare institutions. (shrink)

Objective Our study sought to (1) describe the practices and preferences of Colombian adolescents in accessing sexual and reproductive health services: accompanied versus alone; (2) compare actual practices with stated preferences; and (3) determine age and gender differences regarding the practice and these stated preferences. -/- Methods 812 participants aged 11–24 years old answered a survey in two Profamilia clinics in the cities of Medellin and Cali in Colombia. A cross-sectional analysis was performed to compare participants’ answers based on the (...) variables of gender and age. -/- Results A quarter of participants visited the clinic alone (25.4%). Females were more likely to go alone in comparison to males (26.3% vs 14.1%; p = 0.031), and older participants went alone more often than younger participants (p < 0.001). Most participants – 72.7% (95 %CI: 69.3–75.9) – expressed a preference in being accompanied to the clinic, and more than 90% had their preferences met. The preferences of older participants were, however, less likely to be met than those of younger participants (p < 0.001), notably, because they predominantly wanted to be accompanied. -/- Conclusion Contemporary public health and bioethics literature advocates in favor of developing health services that better meet the preferences of adolescents. The present research highlights an apparent blind spot related to the role that others (e.g., parents, friends, partners) can or should play in accompanying adolescent patients when they access sexual and reproductive health services. Respecting adolescents’ preferences, and hence their autonomy, is not simply a matter of ensuring freedom from constraints (e.g., their right and ability to go alone). Rather, it should also consider the liberty to choose whether to be accompanied when accessing SHRS and by whom. (shrink)

Adaptation and stress are two main concepts useful for better understanding the phases of illness and health-related human behavior. The two faces of adaptation, adaptation as a process and adaptation as a product, have raised the question of how long the adaptation process will take in cancer trajectories. The care setting transition from clinical-based into home-based cancer care has stressed the role of family caregivers (FCG) in cancer management. This study examines how types of demanded healthcare information affect (...) the FCG’s role in catalyzing the adaptation of female cancer patients. The mindsponge theory was used in conceptual development and results interpretation. Bayesian Mindsponge Framework (BMF) analytics was used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of demanded healthcare information, FCGs with a higher tendency to demand cancer-specific information are more likely to need support in catalyzing the adaptation of female cancer patients. Meanwhile, FCGs with a higher demand for information on alternative therapies are less likely to need support in catalyzing cancer adaptation. Other types of healthcare information have ambiguous effects on the need for support in cancer adaptation assistance. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome, must be prioritized to assist FCG’s role in catalyzing adaptation among female cancer patients. Cancer prognosis and outcomes reflect the future of cancer care results. (shrink)

Background: Healthcare workers in the front line of diagnosis, treatment, and care of patients with coronavirus disease 2019 are at great risk of both infection and developing mental health symptoms. This study aimed to investigate the following: whether healthcare workers in general hospitals experience higher mental distress than those in psychiatric hospitals; the role played by religion and alexithymic trait in influencing the mental health condition and perceived level of happiness of healthcare workers amidst the stress of (...) the COVID-19 pandemic; and factors that influence the resilience of healthcare workers at 6 weeks' follow-up.Methods: Four-hundred and fifty-eight healthcare workers were recruited from general and psychiatric hospitals, and 419 were followed-up after 6 weeks. All participants filled out the 20-item Toronto Alexithymia Scale, five-item Brief-Symptom Rating Scale, and the Chinese Oxford Happiness Questionnaire.Results: Under the stress of the COVID-19 pandemic, 12.3% of frontline healthcare workers in general hospitals reported having mental distress and perceived lower social adaptation status compared with those working in psychiatric hospitals. Christians/Catholics perceived better psychological well-being, and Buddhists/Taoists were less likely to experience mental distress. The results at 6 weeks of follow-up showed that the perceived lower social adaptation status of general hospital healthcare workers was temporary and improved with time. Christian/Catholic religion and time had independent positive effects on psychological well-being; however, the interaction of Christian/Catholic religion and time had a negative effect.Conclusions: Collectivism and individualism in the cultural context are discussed with regard to alexithymic trait and Buddhist/Taoist and Christian/Catholic religious faiths. Early identification of mental distress and interventions should be implemented to ensure a healthy and robust clinical workforce for the treatment and control of the COVID-19 pandemic. (shrink)

While the use of archives is common as a research methodology in the history and philosophy of science, training in archival methods is more often encountered as part of graduate-level training than in the undergraduate curriculum. Because many HPS instructors are likely to have encountered archival methods during their own research training, they are uniquely positioned to make effective pedagogical use of archives in classes comprised of undergraduate science students. Further, because doing this may require changing the way HPS instructors (...) think about the aims and varieties of archival research, archivists themselves can be valuable resources in developing archives-based learning activities for science students in HPS classrooms. In this article, we describe an archives-based learning activity developed for a population of primarily pre-medical students in a healthcare ethics class and discuss the pedagogical benefits of this activity. This activity was developed via a collaboration between an HPS instructor and an education archivist. Our hope is that this discussion may serve both as a proof of concept for the use of archives-based learning activities as tools for teaching HPS to science students, and as an argument for the unique benefits that archival engagement can impart to science students. (shrink)

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)

Broadband internet access is a super-determinant of health that plays an important role in healthcare and public health outcomes. Laws and policies shape implementation and use of broadband for healthcare and public health. Connecting broadband and telehealth laws with their health impacts, through legal epidemiological research, enables states to make evidence-based decisions to improve health outcomes for underserved populations.

Centre for Applied Philosophy and Public Ethics (CAPPE), Menzies Centre for Health Policy, The Australian National University, LPO Box 8260, ANU Canberra ACT 2601, Australia. Tel.: +61 (0)2 6125 4355; Mobile: +61 (0)431 124 286; Fax: +61 (0)2 6125 6579; Email: michael.selgelid{at}anu.edu.au ' + u + '@' + d + ' '//--> Abstract Thomas Pogge has proposed a supplement to the standard patent regime whereby innovating companies would be rewarded in proportion to the extent to which their innovations lead to (...) reduction of the global burden of disease (GBD). This paper argues that an expansion of this proposal—whereby provision of already existing medicines are incentivised in a similar way—would provide a more comprehensive solution to the healthcare situation in developing countries. It then considers the practical challenges that the implementation of such a proposal (expanded or otherwise) would entail. Though these include difficulties associated with disease burden metric, I argue that the most serious difficulties are associated with the problem of causal attribution. A basic idea underlying Pogge's proposal is that the disease burden reduction attributable to particular interventions can be determined. Theoretically speaking, in cases involving multiple interacting causal factors, there may be no fact of the matter regarding the extent to which disease burden reduction should be attributed to one intervention as opposed to another; and (even if workable practical solutions to this theoretical challenge can be met) the data requirements for implementation would be daunting. CiteULike Connotea Del.icio.us What's this? (shrink)

In recent years, the development process of pharmaceuticals, medical devices, and related products and the overall market of these products have become increasingly global. This paper discusses the need for better governance of one aspect of this market: the production, distribution, and use of pharmaceutical knowledge. Various controversies, some of which will be described in this paper, highlight how industry control over pharmaceutical data production has resulted in very serious threats to public health. Different practices and regulatory (...) fields that affect what I will refer to in this paper as “pharmaceutical knowledge production” are all too often artificially separated and dealt with in isolation, which seriously affects the quality of the available information on the safety and effectiveness of products. I will examine here how a human rights-based approach should inspire us to look more carefully not only at the significant human rights-related interests that are at stake, but also at the relations between the different interwoven regulatory, cultural, and social factors and how these play out at the various stages of knowledge production. (shrink)

This article aims to focus on how signatories versus nonsignatories in the U.S. pharmaceutical sector compare with respect to the internal and external stakeholders and principles of the United Nations Global Compact (UNGC). We seek to answer the question: Do signatories to the UNGC walk the talk better than nonsignatories as determined by a variety of published rankings and data? This research presents an innovative approach to the evaluation of UNGC signatories. It uses several objective and independent data (...) sources to assess a matched group of signatories versus nonsignatories in the U.S. pharmaceutical sector. Signatory organizations in the same sector as determined by SIC codes were matched with nonsignatories on variables such as size and number of employees in U.S. pharmaceutical companies. Then both types of organizations were compared on the following data sources: Coalition for Environmentally Responsible Economies ratings, ratings by external stakeholders, ratings by employees, unionization data, financial measures, and annual reports to shareholders. Using nonparametric testing the research found there are differences between signatories and nonsignatories in the U.S. pharmaceutical sector for some of the external stakeholder measures and no differences were found for the internal stakeholder measures. (shrink)

The prevailing model for encouraging innovation based on patents and market-oriented raises at least two economic and ethical issues: it imposes barriers on individuals and developing countries governments' access to medicines by defining prices that do not match their income, and the unavailability of new or appropriate products to address the health problems of these populations. In the last decade, this scenario has undergone some changes due to the emergence of new actors, the contribution of aid resources, the introduction to (...) the market of new products against neglected diseases, the development of new governmental healthcare policies and research programs, etc. One example of such initiatives is the Fixed-Dose Artesunate Combination Therapy (FACT) project consortium, which brought together institutions with different natures from both the North and the South, for the development of two antimalarial fixed-dose combinations recommended by the WHO – artesunate-amodiaquine (ASAQ) and artesunate-mefloquine (ASMQ). This paper proposes to describe and analyze the ASMQ consortium, which is the result of a new pharmaceutical development approach, based on a different paradigm – needs-driven instead of market-driven –, collaborative, with strategic participation of institutions from the South, funded by alternative resources (public and philanthropic). Thus, it represents an interesting object of study for bioethical debates on intellectual property and innovation, and its analysis is justified in light of the current debate on ways of stimulating needs-driven pharmaceutical innovation. (shrink)

Healthcare delivery and access, both in the United States and globally, were negatively affected during the entirety of the COVID-19 pandemic. This was particularly true during the first year when countries grappled with high rates of illness and implemented non-pharmaceutical interventions such as stay-at-home orders. Among children with special healthcare needs, research from the United Kingdom (U.K.) has shown that the pandemic response uniquely impacted various aspects of their care, including decreased access to care, delays in diagnosis, (...) and poorer chronic disease control. In response to these findings, and to begin to comprehend whether the concerning findings from the nationalized system of healthcare in the U.K. extend to the highly dissimilar United States (U.S.) healthcare context, we reviewed the literature on alterations in access to and delivery of care during the early stages of the COVID-19 pandemic for children with special healthcare needs in the U.S. We then utilize these findings to consider the ethical and policy considerations of alterations in healthcare provision during pandemics and crisis events in the U.K. and U.S. and make recommendations regarding how the needs of CSHCN should be considered during future responses. (shrink)

Healthcare reforms in India have been a much-debated issue in the recent past. While the debate has focused mainly on the right to healthcare, another by-product that has evolved out of the debate was the current problem of medical malpractice and the healthcare law. The last decade has seen an increase in the healthcare facilities in the country. This, however, has come with a bulk of medical error cases which the courts have entertained. According to reports, (...) there has been an increase in medical litigation cases by 400% in the last decade. There are about 5.2 million cases of medical error in the country every year. While there exists a standard legal system in the country which entertains such complaints of medical malpractice, the attempt by regulators and medical practitioners should be to reduce these cases. This paper seeks to analyze the extent to which medical malpractice cases affect consumers. It analyzes the existing medical liability system which has mainly evolved through the jurisprudence laid down by the English courts and critiques it. It also looks into the major reasons for such medical mishaps. Authors argue that a “No-Fault” system may give better outcomes. They analyze this by looking at the no-fault liability model implemented in New Zealand. Narratives of no-fault liability being implemented in India have also been used. These are showcased from instances of Motor Vehicles Act, 1988, and Clinical Trial regulations. It is also argued that a by-product of a no-fault liability system is stringent regulations which are used to reduce the possibility of medical mishaps altogether. Lastly, the possible problems of the no-fault liability system are discussed in the paper. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Are We There Yet?A Narrative of Firsthand Interpreter Experiences in the Medical Field and Insights to Aid Language Access ComplianceHilda Sanchez-HerreraMy Spanish interpreting journey began in 2008. In those days, very little training was available, and online studies were very new and rare. Early trainings involved out-of-town interpreter and translation conferences, reading the recently released Culturally and Linguistically Appropriate Services (CLAS) standards documents, and participating in the diversity events (...) at the hospital and in the community. Eventually, I did three different medical interpreter training programs, each teaching me something new and improving my skills. The first few years opened my eyes to what it meant for one to be trained, qualified, and certified. It has been a marvelous learning experience.Now, with sixteen years of experience and the vastness and richness of being an interpreter in various settings, I continue to learn to be flexible, patient, and courageous. I've also learned to be a teacher because clinical staff have one perspective of what interpreting is, and we have another. I've learned to be courageous because the field of Language Access is very demanding and involves encountering a lot of biases and judgmental perspectives. Language Access champions advocate throughout the nation so that those who are working in this field will have better working conditions. Collaborations started in the community, extending into social services, legal, and beyond.Interpreting sessions that had the most impact are many, but a few stand out, including a patient I assisted who had presumed Locked-In Syndrome and a domestic abuse female at a maternal-fetal appointment. I have had to explain to a family what it means to be brain dead and have interpreted for numerous palliative care sessions.The presumed Locked-In syndrome patient was quite the experience. I had recently started working on the floor at the hospital and was making my rounds to Spanish-speaking inpatients. One morning, I arrived just as the physician team was making their rounds. I listened to the briefing: a 42-year-old female had suffered a stroke. She could not speak and could not use her extremities. The team had done what they could and reached the conclusion that she was "locked-in" because she was aware but their neurological exams were inconclusive. I asked if they had used the video or phone interpreting services and they said yes but it was not fruitful. I offered to rule out a language barrier. They agreed.It was then that the patient began making great progress in her recovery. The team was amazed at the patient's reaction. She cried when she heard her language spoken. We established communication via a board and eye signals. Speech therapy came and they were able to assess her ability to speak and swallow. While she remained approximately 6 months in the hospital, it was not until the last two [End Page 154] months that she made great strides, and it was all due to language access. Eventually, she was transferred to another healthcare facility closer to home. I was overjoyed and wondered why they had not had this success earlier. It was later determined that the connections were not good, and the interpreter could not "see" what the patient was doing.The domestic violence female was an emotional one for me. I was scheduled to assist at two of her appointments that morning: one at maternal fetal and the other at ENT. Upon arrival, I greeted her and noticed her eyes were watery and her face seemed a little swollen, but I did not want to make her feel embarrassed, so I remained quiet. I accompanied her to the ENT appointment first. The doctor asked her questions, and she seemed nervous. Still no intervention. We finished and went to the maternal-fetal appointment. On the way to the office, I asked if she was ok. She began to cry and said in a soft tone, looking around, that her partner had hit her on the way to the clinic.I was shocked! I knew that permission was needed to share this information with the providers and that her safety was critical. She thought... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Bleed: Destroying Mythsand Misogyny in Endometriosis Care by Tracey LindemanSarah Seabrook (bio)Bleed: Destroying Myths and Misogyny in Endometriosis Care by Tracey Lindeman. Toronto: ECW Press, 2023Endometriosis—a complex and painful health condition in which tissue similar to the endometrium tissue that normally lines the inside of a person's uterus grows outside—has gained considerable attention over the last few years. Because endometriosis patients' concerns about their reproductive health and menstrual (...) experiences are often dismissed by healthcare professionals (Wahl 2021; Alberta Women's Health Foundation 2022), there has been a groundswell of conversations about abnormal menstruation and endometriosis, not by government or medical professionals but rather by patients who validate each other's experiences and relate to one another's struggles in seeking access to care (EndoAct Canada 2024). Experiences about the trials and tribulations endometriosis patients endure seeking medical care and diagnosis are shared through op-eds and Facebook support groups and have appeared on special feature segments on the local news. With increased attention around endometriosis, there remains a lot of work to do around dispelling what endometriosis truly is and why people are not being adequately treated.In BLEED: Destroying Myths and Misogyny in Endometriosis Care, author and endometriosis patient Tracey Lindeman (2023), takes on the work of that dispelling. With a focus on the North American context (largely Canada and the United States), Lindeman shines a light on the deeply embedded systemic discrimination that shapes experiences of endometriosis and other gendered health conditions that prevent women, trans, and non-binary people from receiving a diagnosis and/or adequate treatment. This compelling part memoir, part investigation of the systemic barriers to care for endometriosis patients, reveals the long-standing and ongoing history of misogyny in contemporary gynecology and healthcare (Davis-Floyd 1997; Wetherell, Taylor, and Yates 2001; Young, Fisher, and Krikman 2019), including how pharmaceutical funding and interests are prioritized at the expense of endometriosis patients' health and well-being, and how sexism and racism, among other markers of discrimination, are [End Page 181] institutionalized features in healthcare systems that strip women, trans, and non-binary people of their agency over their bodies and decision-making capacity.BLEED is a particularly timely and important contribution to feminist health scholarship because it offers an intimate account of how the historical medicalization of female-specific health issues has normalized power asymmetries between patients and medical professionals. She demonstrates how the contemporary dynamics in healthcare settings leave women and gender-nonconforming people to navigate the intersections of misogyny and myths surrounding endometriosis. Lindeman does so by discussing her own experiences, including being asked by medical professionals to provide a written letter of support from her male partner indicating his approval of her requested hysterectomy.As both a researcher and someone with endometriosis, Lindeman is able to take the narrative of BLEED in several directions. She offers readers the intimacy of her perspective and experiences with endometriosis in Canada's health system while also offering readers a broader view of how age, race, gender identity, sexual orientation, and geography inform the experiences of others who have endometriosis. Her ability to situate her experiences as a cis-white woman as the focal point of her analysis provides readers with a strong reference point to recognize and understand the heightened systemic discrimination experienced by her nonwhite, non-cis interviewees. In particular, the contrast between Lindeman's experiences of being prescribed sixty-tablet refills of the painkiller naproxen for endometriosis pain and the experiences of her interviewee, Denise, a black cis-woman who was only given five naproxen pills a month provides insight into racialized dimensions of endometriosis care (39).Recognizing that a history unlearned results in history being repeated, Lindeman opens BLEED by situating the painfully paternalistic and misogynistic experiences of endometriosis patients in the healthcare system in the context of the evolution of gynecology as a subfield. Lindeman highlights how the medicalization of endometriosis as a condition went hand in hand with the professionalization of gynecology, which has since created and perpetuated a power asymmetry between patients and their care providers. Whereas gynecological care was historically provided by women—witches, midwives, and healers—the long male-dominated... (shrink)

Background: COVID-19 pandemic has led to heightened moral distress among healthcare providers. Despite evidence of gendered differences in experiences, there is limited feminist analysis of moral distress. Objectives: To identify types of moral distress among women healthcare providers during the COVID-19 pandemic; to explore how feminist political economy might be integrated into the study of moral distress. Research Design: This research draws on interviews and focus groups, the transcripts of which were analyzed using framework analysis. Research Participants and (...) Context: 88 healthcare providers, based in British Columbia Canada, participated virtually. Ethical Considerations: The study received ethical approval from Simon Fraser University. Findings: Healthcare providers experienced moral dilemmas related to ability to provide quality and compassionate care while maintaining COVID-19 protocols. Moral constraints were exacerbated by staffing shortages and lack of access to PPE. Moral conflicts emerged when women tried to engage decision-makers to improve care, and moral uncertainty resulted from lack of clear and consistent information. At home, women experienced moral constraints related to inability to support children’s education and wellbeing. Moral conflicts related to lack of flexible work environments and moral dilemmas developed between unpaid care responsibilities and COVID-19 risks. Women healthcare providers resisted moral residue and structural constraints by organizing for better working conditions, childcare, and access to PPE, engaging mental health support and drawing on professional pride. Discussion: COVID-19 has led to new and heightened experiences of moral distress among HCP in response to both paid and unpaid care work. While many of the experiences of moral distress at work were not explicitly gendered, implicit gender norms structured moral events. Women HCP had to take it upon themselves to organize, seek out resources, and resist moral residue. Conclusion: A feminist political economy lens illuminates how women healthcare providers faced and resisted a double layering of moral distress during the pandemic. (shrink)

The highest attainable standard of health is a fundamental human right, which has been part of international law since 1948. States and their institutions are the primary duty bearers responsible for ensuring that human rights are respected, protected, and fulfilled. However, more recently it has been argued that pharmaceutical companies have a coresponsibility to fulfill the human right to health. Most prominently, this coresponsibility has been expressed in the United Nations Millennium Goal 8 Target 4. “In cooperation with (...) class='Hi'>pharmaceutical companies, provide access to affordable essential drugs in developing countries.”. (shrink)

It has been argued that ethical frameworks for data science often fail to foster ethical behavior, and they can be difficult to implement due to their vague and ambiguous nature. In order to overcome these limitations of current ethical frameworks, we propose to integrate the analysis of the connections between technical choices and sociocultural factors into the data science process, and show how these connections have consequences for what data subjects can do, accomplish, and be. Using healthcare as an (...) example, attention to sociocultural conversion factors relevant to health can help in navigating technical choices that require broader considerations of the sociotechnical system, such as metric tradeoffs in model validation, resulting in better ethical and technical choices. This approach promotes awareness of the ethical dimension of technical choices by data scientists and others, and that can foster the cultivation of 'ethical skills' as integral to data science. (shrink)

This paper brings the concept of affective scaffolding to bear on a much-debated controversy: the expanding use of psy- chiatric medications to treat an increasingly broad range of human discontents. ‘Affective scaffolding’ refers to the variety of ways that agents engage with, recruit or modify their environments to actively shape their emotions, moods, or other affective phenomena. Psychiatric drugs are designed, marketed, and prescribed as technologies that have the special power to transform affective life by intervening on the pathological underpinnings (...) of distress and suffering to change how we feel. The paper develops an account of psychiatric drug use as affective scaffolding and examines how psychiatrization – the complex social process through which psychiatry comes to influence more and more domains of human life – impacts this form of scaffolding. I propose that psychiatrization influences affective scaffolding by biasing individuals toward psychiatric drugs to manage an expanding array of affective experiences. In some cases, I argue, this results in bad pharmaceutical scaffolding. Bad pharmaceutical scaffolding emerges when an agent is influenced to select and rely upon psychiatric drugs in attempts to exert individual control over distress and suffering where (1) at least some of the key determinants of these affective experiences are properties of the agent’s environment, in contrast to, in a strict sense, properties internal to the person, and (2) pharmaceutical scaffolding obviates the need for or displaces other non-pharmaceutical options that would better serve the agent's affective needs and interests. (shrink)

What are the limits of the use of artificial intelligence (AI) in the relational aspects of medical and nursing care? There has been a lot of recent work and applications showing the promise and efficiency of AI in clinical medicine, both at the research and treatment levels. Many of the obstacles discussed in the literature are technical in character, regarding how to improve and optimize current practices in clinical medicine and also how to develop better data bases for optimal (...) parameter adjustments and predictive algorithms. This paper argues that there are also in principle obstacles to the application of AI in clinical medicine and care where empathy is important, and that these problems cannot be solved with any of the technical and theoretical approaches that shape the current application of AI in specific areas of clinical medicine in which care for patients is fundamental. This is important, because it generates specific risks that may be overlooked otherwise, and it justifies the necessity of human monitoring and emotional intervention in clinical medicine. Consequently, difficult issues concerning moral and legal responsibility may ensue if these in principle problems are ignored. (shrink)

Diabetes is epidemic and many people cannot afford insulin, a lifesaving medication, as its price has increased by almost 160 percent in the past five years.1 To help subsidize the cost of insulin, one of the staff members at my hospital would like to give patients copayment coupons provided to her by pharmaceutical companies. I advised my colleague to stop distributing these branded coupons, as they promote particular pharmaceutical companies. This practice is not consistent with the policy on (...) interaction with industry established by the Johns Hopkins Health System. Yet at the same time, I want my patients to be able to afford their insulin so they can treat their diabetes. I truly believe in utilitarianism. Would temporarily subsidizing patients’ insulin make me and my staff better healthcare providers? Would this minimize my patients’ financial burden? Would giving away medications coupons help pharmaceutical companies influence me as a prescriber? This challenge created a personal internal debate and profound moral distress. (shrink)

The paper discusses the possibility that the benefits of pharmacogenomics will not be distributed equally and will create orphan populations. I argue that since these inequalities are not substantially different from those produced by ‘traditional’ drugs and are not generated with the intention to discriminate, their production needs not be unethical. Still, the final result is going against deep-seated moral feelings and intuitions, as well as broadly accepted principles of just distribution of health outcomes and healthcare. I thus propose (...) two provisos that would prevent the most offensive outcomes and moderate the scope of the produced inequalities. The first proviso rejects pharmacogenomics innovations that worsen existing group inequalities and aggravate the disadvantage of communities with a history of discrimination. The second proviso requires that there is a strategy in place to even out as much as possible the distribution of benefits in the future and that a system of compensations is in place for pharmacogenomic orphans. Given that only one moral problem generated by pharmacogenomics has been tackled, the list of provisos might be expanded when other issues are considered. (shrink)

Background Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT.Methods A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces.Results 882 pregnant women and 395 partners completed the (...) survey. 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome.Conclusions Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation. (shrink)

Objective Having failed to achieve adequate influenza vaccination rates among employees through voluntary programmes, healthcare organisations have adopted mandatory ones. Some programmes permit religious exemptions, but little is known about who requests religious objections or why. Methods Content analysis of applications for religious exemptions from influenza vaccination at a free-standing children’s hospital in Cincinnati, Ohio, USA during the 2014–2015 influenza season. Results Twelve of 15 260 employees submitted applications requesting religious exemptions. Requestors included both clinical and non-clinical employees. All (...) requestors voluntarily identified their religious affiliation, and most were Christian. Content analysis identified six categories of reasons used to justify an exemption: risks/benefits, ethical/political, lack of direct patient contact, providence, purity and sanctity of life. Individuals articulated reasons in 1–5 categories. The most frequently cited category was purity; the vaccine and/or its mode of administration were impure, or receiving the vaccine would make the individual impure. Two individuals asserted that the vaccine contained cells derived from aborted human fetuses. Individuals also volunteered information supporting the sincerity of their beliefs including distress over previous vaccination and examples of behaviour consistent with their specific objection or their general religious commitment. All requests were approved. Conclusions Less than 0.1% of employees requested religious exemptions. Partnering with religious leaders and carefully correcting erroneous information may help address requestors’ concerns. (shrink)

There are deep structural conflicts between the mission of healthcare as cooperative care to the sick and injured and that of healthcare as a business whose mission is maximizing profits. These conflicts come to the fore in the medical pharmaceutical industry. I first set these out in a context that addresses the mission of healthcare, then examine the relative roles of competitive and cooperative systems of distributive justice, and then argue for the creation of nonprofit (...) class='Hi'>pharmaceutical companies and the transformation of many for-profit companies into companies subject to public oversight and profit curbs. The recommendations are aspirational for the United States but it is meant to be action guiding for those industrialized countries wealthy enough to provide universal health coverage. (shrink)

This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and the clinical and pedagogical (...) implications of the CBPNM model. Principles and proposed outcomes of the CBPNM model are presented. (shrink)

Jacobson finds two distinct meanings of “dignity” in the literature on dignity and health: intrinsic human dignity and social dignity constituted through interactions with caregivers. Especially the latter has been central in empirical health research and warrants further exploration. This article focuses on the social dignity of people marginalized by mental illness, substance abuse and comparable conditions in extramural settings. 35 studies published between 2007 and 2017 have addressed this issue, most of them identifying norms for social dignity: civilized interactions, (...) non-stigmatizing treatment, treatment as unique individuals, being taken seriously, maintaining a positive identity, experiencing independence, relating to others, and participating in daily life. We argue that these norms belong to ideal theory, whereas we agree with Robeyns and others that improving practice is better served by non-ideal theory. Towards this end, we derive from the literature four building blocks for a non-ideal theory of dignity: avoid violations of dignity rather than seeking to promote it; dignity is not a goal to be reached; it requires ongoing effort; promoting dignity is a balancing act; contradictory norms can make it impossible to realize; and dignity can be undermined by organizational and discursive constraints. (shrink)

The moral justification of intellectual property is often called into question when placed in the context of pharmaceutical patents and global health concerns. The theoretical accounts of both John Rawls and Robert Nozick provide an excellent ethical framework from which such questions can be clarified. While Nozick upholds an individuals right to intellectual property, based upon its conformation with Lockean notions of property and Nozicks ideas of just acquisition and transfer, Rawls emphasizes the importance of basic liberties, such as (...) an individuals right to health, superceding such secondary rights as intellectual property rights. From a policy perspective, patent protection for pharmaceutical products necessarily entails the balancing of corporate intellectual property interests and public interests in healthcare. The moral dilemma that occurs when these two interests clash is not easily resolved. Aside from corporate and public interests, the state maintains an interest in creating and preserving policies that regulate the moral dilemma itself. This paper analyzes the economic and ethical factors surrounding the production and distribution of the anti-HIV medication, AZT. Potential policy implications and recommendations are also discussed. (shrink)

This article teases out the relationship between family form and the state's social safety nets around healthcare, showing the deep unfairness of measuring social safety nets by whether a couple marries. By continuing to tie healthcare benefits to specific family structures, we perpetuate the “galloping” inequality marking America today.This article concludes that, whatever happens with the thousands of benefits given to married couples in other domains, social policy should move beyond marriage with respect to healthcare. Delinking support (...) for healthcare coverage and services from family form is just, better assists struggling families, and is in our collective self-interest. (shrink)

Background: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018. Research objective: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals. Research design: A qualitative research design using semi-structured audio-recorded interviews was adopted. The data (...) collection and analysis were performed according to the Grounded Theory approach. Participants: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy. Ethical considerations: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy). Findings: The authors identified a main overall category, ‘Pros and Cons of the Italian law on advance directives’, composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions. Discussion: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient’s self-determination and support healthcare professionals in providing care according to patients’ wishes. Conclusion: An understanding of the healthcare providers’ perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues. (shrink)

Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation (...) of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data. (shrink)