Health care insurance schemes, whether private or public, are notoriously unaccommodating to individuals with disabilities. While most nonelderly nondisabled persons in the U.S. are insured through private sources, coverage sources for nonelderly persons with disabilities have traditionally been a mix of private and public coverage. For all age groups, the employment-to-population ratio is much lower for persons with a disability than for those with no disability. Moreover, employed persons with a disability were more likely to be self-employed than those (...) with no disability. As a group, therefore, nonelderly people with disabilities have not been as well positioned as others to obtain private health care insurance because in the U.S., acquiring such coverage usually is employer based. (shrink)

According to HealthCare.gov, by improving access to quality health for all Americans, the Affordable Care Act (ACA) will reduce disparities in health insurance coverage. One way this will happen under the provisions of the ACA is by creating a new health insurance marketplace (a health insurance exchange) by 2014 in which “all people will have a choice for quality, affordable health 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 “essential health benefits package”. However, without a clear understanding of what criteria must be satisfied for health care 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 provide health insurance coverage to as many people as is economically feasible, we may replace one kind of disparity (lack of health insurance) with another kind of disparity (lack of adequate health insurance). Thus, this paper explores the concept of “essential benefits”, arguing that the “essential health benefits package” in the ACA should be one that optimally satisfies the basic needs of the people covered. (shrink)

Biobanks are repositories that store human biological materials and their associated data. They are rapidly becoming part of national and international networks and give rise to unique ethico-regulatory issues. Whether consent is informed and whether this term should be used when specimens are collected for biobank research is questionable. Where risks occur, they are usually social and relate to identifiability. Public trust and confidence are important for the success of this type of research. Consensus is growing that governance of biobanks (...) should be harmonised. Controlled specimen and data access agreements are essential. The South African National Health Act and its Regulations, that provide the foundation for the legal framework with regard to human tissue and research in South Africa, are silent on the issue of biobanks and the law lags behind while science and technology advance rapidly. The use of biobank assets will lead to significant benefits in human health and should be encouraged while taking account of the associated ethical, legal and social issues and working towards a balance between these two positions. (shrink)

Meat is a multi-billion-dollar industry that relies on people performing risky physical work inside meat-processing facilities over long shifts in close proximity. These workers are socially disempowered, and many are members of groups beset by historic and ongoing structural discrimination. The combination of working conditions and worker characteristics facilitate the spread of SARS-CoV-2, the virus that causes COVID-19. Workers have been expected to put their health and lives at risk during the pandemic because of government and industry pressures to (...) keep this “essential industry” producing. Numerous interventions can significantly reduce the risks to workers and their communities; however, the industry’s implementation has been sporadic and inconsistent. With a focus on the U.S. context, this paper offers an ethical framework for infection prevention and control recommendations grounded in public health values of health and safety, interdependence and solidarity, and health equity and justice, with particular attention to considerations of reciprocity, equitable burden sharing, harm reduction, and health promotion. Meat-processing workers are owed an approach that protects their health relative to the risks of harms to them, their families, and their communities. Sacrifices from businesses benefitting financially from essential industry status are ethically warranted and should acknowledge the risks assumed by workers in the context of existing structural inequities. (shrink)

This chapter explores two questions in detail: How should we determine the threshold for costs that individuals are asked to bear through insurance premiums or care-related out-of-pocket costs, including user fees and copayments? and What is an adequate relationship between costs and benefits? This chapter argues that preventing impoverishment is a morally more urgent priority than protecting households against income fluctuations, and that many health insurance plans may not adequately protect individuals from health care costs that threaten (...) to drop their financial status below a decent minimum. A design that places greater emphasis on preventing impoverishment and finances the achievement of that goal by reducing unnecessary subsidies to better-off households would better accord with a sufficientarian approach to health care. -/- . (shrink)

ABSTRACT Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity (CBD), adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, (...) so as to enable research subjects to claim a share of the benefits to be negotiated on a case‐by‐case basis. Our conclusion on this question is: ‘No, the CBD should not be expanded to include human genetic resources.’ There are essential differences between human and non‐human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity (e.g. jobs). When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as ‘window dressing’. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization’s Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed. (shrink)

Thomas Alured Faunce, College of Law, Fellows Road, Acton, Canberra ACT 0200, Australian National University, Fax: 61 2 61253971, Email: Thomas.Faunce{at}anu.edu.au ' + u + '@' + d + ' '//-->This paper sets out to analyse three different academic proposals for addressing the needs of the poor in relation to new, rather than ‘essential’ medicines. It focuses particularly on research and development prize funds, a health impact fund system and a multilateral treaty on health technology cost-effectiveness evaluation (...) and competitive tender. It compares the extent to which each responds to the ‘market fundamentalist’ philosophy and begins to analyse their respective strengths and weaknesses. CiteULike Connotea Del.icio.us What's this? (shrink)

When the President’s Commission of 1983 concluded that there is an “ethical obligation” to secure universal access to a decent minimum of health care, some hoped that this standard would be achieved in the United States within a few years. Nearly 30 years later, when we began work on this issue of the Journal of Medicine and Philosophy (JMP), that standard had yet to be achieved, although the bills that would later become the Affordable Care Act (ACA) were then (...) working their way through Congress. Now, the ACA has been passed and signed into law. The provisions of that bill aim at achieving universal access to an “essential health benefits (EHBs) package". (shrink)

Most of the world's health problems afflict poor countries and their poorest inhabitants. There are many reasons why so many people die of poverty-related causes. One reason is that the poor cannot access many of the existing drugs and technologies they need. Another, is that little of the research and development (R&D) done on new drugs and technologies benefits the poor. There are several proposals on the table that might incentivize pharmaceutical companies to extend access to essential (...) drugs and technologies to the global poor.1 Still, the problem remains – the poor are suffering and dying from lack of access to essential medicines. So, it is worth considering a new alternative. This paper suggests rating pharmaceutical and biotechnology companies based on how some of their policies impact poor people's health. It argues that it might be possible to leverage a rating system to encourage companies to extend access to essential drugs and technologies to the poor. (shrink)

Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity, adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as (...) to enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity. When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed. (shrink)

Effective stakeholder engagement and inclusive governance are essential for effective and equitable ocean management. However, few cross-national studies have been conducted to examine how stakeholders’ economic and cultural benefit perceptions influence their support level for policies focused on ocean preservation. The current study aims to fill this gap by employing the Bayesian Mindsponge Framework (BMF) analytics on a dataset of 709 stakeholders from 42 countries, a part of the MaCoBioS project funded by the European Commission H2020. We found that (...) economic and cultural benefit perceptions are generally negatively associated with the policy support level. Regarding economic aspects, stakeholders considering transportation and shipping, renewable energy generation, and oil and gas provision as the most crucial benefits their countries’ oceans provide tend to obtain less support for policies focusing on ocean preservation. Meanwhile, for cultural aspects, perceiving recreation and tourism, aesthetic pleasure, mental health and well-being support, and sense of identity provision as the most important benefits provided by the country’s ocean are negatively associated with the policy support level. The perceived economic, cultural, and environmental tradeoffs when supporting policies focused on ocean preservation were discussed. Recommendations for improving the effective management of multi-use marine space are also provided to reduce the perceived competing interests among stakeholders. (shrink)

Background Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist’s potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Method Theses/dissertations on HIV/AIDS that described research studies involving the use (...) of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Results Of 174 theses/dissertations on HIV, ethics approval was documented in 17 and informed consent in 77. Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD and was not reported in any Bachelors’ degree dissertation. Informed consent was also highly reported in MD theses followed by undergraduate theses. Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Conclusions Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics be incorporated in the curriculum of universities in Cameroon in order that the next generation of scientists may be better equipped with thorough knowledge and practice of HRE. This, we believe, would be one way of fighting the occurrence of research scandals, which have not yet abated significantly, especially those arising from negligence or inexcusable ignorance. (shrink)

Health care reforms, in particular the expansion of public and/or private health care benefit coverage to some or all population groups, is becoming an increasingly hot topic for discussion—and in some cases for action—at all levels of government. With almost 16% of Americans estimated to be uninsured for at least part of the year, opinion polls show health care near the top of the general public’s list of concerns. Little wonder that presidential candidates for the 2008 election (...) are incorporating ‘‘universal health care coverage’’ proposals in their campaign platforms. Will ‘‘cradle-to-grave’’ coverage for all become a reality or will they just experience cradle-to-grave debates over this issue? That is essentially one of the questions posed in the following discussion on the role of nonprofit health care organizations in promoting, and operating under, universal health care coverage. (shrink)

"In comparison to medicine, the professional field of public health is far less familiar. What is public health, and perhaps as importantly, what should public health be or become? How do causal concepts shape the public health agenda? How do study designs either promote or demote the environmental causal factors or health inequalities? How is risk understood, expressed, and communicated? Who is public health research centered on? How can we develop technologies so the (...) class='Hi'>benefits are more fairly distributed? Do people have a right to public health? How should we integrate ethics into public health practice? The Routledge Handbook of Philosophy of Public Health addresses these questions and more, and is the first collection of its kind. Comprising twenty-six chapters by an international and interdisciplinary team of contributors, the handbook is divided into four clear parts: Concepts and Distinctions Reasons and Actions Distribution and Inequalities Rights and Duties. The Routledge Handbook of Philosophy of Public Health is a field-defining and sustained reflection on the various ethical, political, methodological and conceptual aspects of global public health. As such it is an essential reference source for students and scholars working in political philosophy, bioethics, public health ethics, and the philosophy of medicine, as well as for professionals and researchers in related fields such public health and epidemiology"--. (shrink)

ABSTRACT Most of the world's health problems afflict poor countries and their poorest inhabitants. There are many reasons why so many people die of poverty‐related causes. One reason is that the poor cannot access many of the existing drugs and technologies they need. Another, is that little of the research and development (R&D) done on new drugs and technologies benefits the poor. There are several proposals on the table that might incentivize pharmaceutical companies to extend access to (...) class='Hi'>essential drugs and technologies to the global poor.1 Still, the problem remains – the poor are suffering and dying from lack of access to essential medicines. So, it is worth considering a new alternative. This paper suggests rating pharmaceutical and biotechnology companies based on how some of their policies impact poor people's health. It argues that it might be possible to leverage a rating system to encourage companies to extend access to essential drugs and technologies to the poor. (shrink)

The brief, practical texts in the Essentials of Qualitative Methods series introduce social science and psychology researchers to key approaches to to qualitative methods, offering exciting opportunities to gather in-depth qualitative data and to develop rich and useful findings. Essentials of Interpretative Phenomenological Analysis is a step-by-step guide to a research method that investigates how people make sense of their lived experience in the context of their personal and social worlds. It is especially well-suited to exploring experiences perceived as highly (...) significant, such as major life and relationship changes, health challenges, and other emotion-laden events. IPA studies highlight convergence and divergence across participants, showing both the experiential themes that the participants share and the unique way each theme is manifested for the individual. About the Essentials of Qualitative Methods book series: Even for experienced researchers, selecting and correctly applying the right method can be challenging. In this groundbreaking series, leading experts in qualitative methods provide clear, crisp, and comprehensive descriptions of their approach, including its methodological integrity, and its benefits and limitations. Each book includes numerous examples to enable readers to quickly and thoroughly grasp how to leverage these valuable methods. (shrink)

Newborn screening has evolved to include an increasingly complex spectrum of diseases, raising concerns that screening should be optional and require parental consent. Early detection of disorders like PKU and MCAD is essential to prevent serious disability and death in affected children. These are examples of high benefit-risk ratio disorders because of the irrefutable health benefits of early detection, coupled with the low risks of treatment. The dire consequences of not diagnosing an infant with a treatable disorder (...) because of parental refusal to screen are wholly unacceptable. Thus, we believe that newborn screening for disorders with high benefit-risk ratios should continue to be mandatory. (shrink)

The core aims of the Global Health Impact Project include incentivizing pharmaceutical companies for socially conscious production and promoting socially conscious consumption among consumers. Its backbone is a metric that computes the amount of illness burden alleviated by a pharmaceutical drug. This essay aims to assess the connection between values and numbers in the Global Health Impact Project. Specifically, I concentrate on two issues, the anonymity of illness burden and the distribution of health benefits. The former (...) issue asks whether we should treat the illness burden of every person the same. The latter issue asks among whom health benefits should be fairly distributed. Examination of these issues begs for clarification of some of the key concepts of the Global Health Impact Project, such as the definition of essential medicines and the significance of national borders. Although this essay focuses on the two particular metric issues in the Global Health Impact Project, its core argument is applicable to other metrics for ethically motivated initiatives—to construct a metric for an ethically motivated initiative, it is not only important to articulate underlying concepts and values, but it is also important to operationalize them, so they are consistently reflected in the metric. (shrink)

For organizational development that is future-oriented, enterprises increasingly need qualified, motivated and efficient workers who are able and willing to contribute actively to technical and organizational innovations. Furthermore, customers and consumers are increasingly interested in healthy products and services. Therefore, health has become a (potential) business value of strategic importance. In interaction with all relevant stakeholders, an approach was developed for companies that want to manage their health impact in a proactive and preventive manner. The approach was termed (...) Integral Health Management (IHM). IHM forms a strategic approach for reducing the costs of sickness absence and working disability, while the productivity and resilience of the company and its employees are increased. This brings the company direct economic benefits. Finally, it is of prime interest for employees to remain physically and mentally healthy and employable. The IHM approach distinguishes seven lines of development: (1) health as a strategic company interest; (2) the realization of a healthy primary process; (3) a safe and sound physical (work) environment; (4) an inspiring social (work) environment; (5) vital people; (6) a sound relationship with the immediate organizational environment and local community, and (7) healthy products and/or services. The inter-relationships between the seven development lines are essential for combining an improvement of the business impact on health with a strategic interest of companies and organizations. The seven lines of IHM development can easily be linked to the European Foundation for Quality Management''s European Excellence Model. (shrink)

Health care systems, irrespective of how they are financed, present the paradox that to some observers they appear as a major component of social benefits, while to other observers they seem both excessively costly and limited in their effectiveness. These differing perceptions may be explained in part by the diversity of the determinants of health and disease, only some of which are amenable to those preventive or therapeutic measures encompassed in a health care system--the majority of (...) determinants being genetic, societal, or else uninfluenced by those interventions at present available within a health service. The share of national resources which should be devoted to health care, and the method of raising resources, are primarily matters for political decision; but a national system has advantages both of economy and of comprehensiveness. But when it comes to allocation of resources within the established health budget, the knowledge and skills of health professionals are essential to informed decision-making. The possibilities depend critically on the 'state of the art' at a given time, as is illustrated by the radical changes over time in what could be done for patients with renal failure; and health professionals are likely to be most aware of current options, and of how to choose between them. More speculatively, they are also less likely to confuse the attitudes appropriate to providing a service with those required to run a business. (shrink)

Budgets of governments and private insurances are limited. Not all drugs and services that appear beneficial to patients or physicians can be covered. Is there a core set of benefits that everyone should be entitled to? If so, how should this set be determined? Are fair decisions just impossible, if we know from the outset than not all needs can be met? While early work in bioethics has focused on clinical issues and a narrow set of principles, in recent (...) years there has been a marked shift towards addressing broader population-level issues, requiring consideration of more demanding theories in philosophy, political science, and economics. At the heart of bioethics' new orientation is the goal of clarity on a complex set of questions in rationing and resource allocation. Rationing and Resource Allocation in Healthcare: Essential Readings provides key excerpts from seminal and pertinent texts and case studies about these topics, contextualized by original introductions. The volume is divided into three broad sections: Conceptual Distinctions and Ethical Theory; Rationing; and Resource Allocation. Containing the most important and classic articles surrounding the theoretical and practical issues related to rationing and how to allocate scare medical resources, this collection aims to assist and inform those who wish to be a part of bioethics' 21st century shift including practitioners and policy-makers, and students and scholars in the health sciences, philosophy, law, and medical ethics. (shrink)

In all western countries health care budgets are under considerable constraint and therefore a reflection process has started on how to gain the most health benefit for the population within limited resource boundaries. The field of ethics of resource allocation has evolved only recently in order to bring some objectivity and rationality in the discussion. In this article it is argued that priority setting is the prerequisite of ethical resource allocation and that for purposes of operationalization, instruments such (...) as need assessment and health technology assessment (HTA) are essential worktools for making more rational decisions. Thresholds (deduced from the need assessment and HTA) are - within this context - guiding but not binding principles. -/- Discussion of theoretical concepts of not only priority setting, need assessment and HTA complemented by practical examples for showing the challenges and the need, but also the chances of a more explicit and transparent policy of resource allocation in health care. Results: Priority setting in health care is based on the values of equity, justice and solidarity. Health packages decisions are determined from medical need (the severity of the condition) and/or the appropriateness of medical interventions (their cost-effectiveness). With growing awareness that originally effective and cost-effective services and programmes are eventually provided inappropriately, the focus is shifting towards the organisational aspects of provision and application. Therefore, need assessment is based on the distinction of health care needs from demand, supply, or actual care. Additionally HTA provides the evidence on health care interventions in a way that it becomes obvious who benefits from an intervention and who definitely does not benefit, but eventually is harmed. -/- Health services research on effective and cost-effective interventions and research/monitoring of performance that the effective and cost-effective services are provided appropriately are of increasing importance for guiding the decision-making process on priority setting and need assessment. Effective healthcare for all is sustainable, if we start to put expenditures in perspective and focus health policies and research strategies on managing expectations through patient information and a more realistic notion of medical advancements and, on the other hand, on encouraging need-based and cost-effective innovations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Finding PartnershipThe Benefit of Sharing and the Capacity for ComplexityMichaela Amering (bio)Keywordsrecovery, empowerment, trialog, user involvement, schizophreniaIs There Ignorance and Arrogance? In Psychiatry? In Medicine?Adding insight to injury' is the paraphrase psychiatrist Pat McGorry (1992) coined for his reproach of 'pushing for "insight" or "acceptance of diagnosis"' without carefully taking into account the complexities of the individual situation, context, and needs. That must be about the kind of behavior (...) Marga Reimer has in mind in her paper on treatment adherence in the absence of insight, which depicts mental health professionals characterized by arrogance against the common sense of motivating compliance by perceived or anticipated benefits on different everyday life levels, but instead trying to get people to believe in a mental illness such as schizophrenia and wishing them to want treatment for that in the form of medication.In addition, Reimer presents examples from general medicine to make her point that adherence follows perceived or anticipated benefits instead of being a result of insight into a medical model of illness and McGorry (1992) also suggests that disregard for the active role that patients may play as reflected in psychiatry in terms such as 'case management' and 'compliance' "is a failing which extends to mainstream medicine and probably to most systems of human service delivery." On the other hand, Bill Anthony (2006), one of the most eminent experts on psychiatric rehabilitation and recovery in a personal report on his own medical illness, multiple sclerosis—MS, and the assistance he has been receiving in connection with it, describes the 'MS-Community' as exemplary with respect to instilling courage and hope, continually providing information and opportunities for exchange, and for never questioning a person's ultimate freedom of choice. In contrary, in mental health care he does not experience the medical profession as acting with full respect and support for its patients and suggests a great deal more work and transformation—especially concerning coercive treatments—ahead to follow this example. Similarly, it has been suggested that psychiatry should be better integrated into medicine to overcome stigma and discrimination of psychiatric health problems and interventions. A pertinent example of an initiative in this direction is the proposal of a fusion of mental health and incapacity legislation to arrive at ethically consistent legal situations with regard to involuntary [End Page 77] treatment across medicine (Dawson and Szmukler 2006).Is There Something Called Schizophrenia? and How Much Longer?Reimer's main example—schizophrenia—is the diagnosis that poses some of the greatest problems to the field and to the recognition of psychiatry as a scientific medical discipline. The current concept as well as the term 'schizophrenia' will probably not be around much longer; 'a century of schizophrenia is enough' (Kelly and Murray 2002). Suggested solutions for the problems of the diagnosis of schizophrenia concern the urgent complement of the categorical with a dimensional approach (Allardyce et al. 2007), a change also put forward as one of the essential remedies to undermine the stigma of mental illness that is often exacerbated by clinical diagnosis (Corrigan 2007). Such a move would also clearly help against the still prevalent experiences of users of services and their families and friends, whose hopes and dreams have been crushed and whose resilience has been undermined by clinical situations, which in times of psychotic crises, not only forced diagnoses but also prognoses—often scientifically unfounded—on them (Amering and Schmolke 2009).Is There a Solution? Can We Use Our Talents? And Those of People With a Lived Experience of Mental Health Problems and Care?Clinicians as well as scientists know that health, illness, and recovery occur in complex ways and contexts. People faced with mental health problems clearly realize the complexities of their situation and are especially motivated to appreciate the variety of factors and interactions that need to be integrated to arrive at a valid assessment. Ideally, the therapeutic relationship—essentially a partnership—holds a formidable chance of sharing efforts and creating the wisdom for finding and facing the truths necessary to develop solutions that can uphold and work in line with the complexities of human life.I would argue that psychiatric professionals are certainly part... (shrink)

Global health research partnerships have many benefits, including the development of research capacity and improving the production and use of evidence to improve global health equity. These partnerships also include many challenges, with power and resource differences often leading to inequitable and unethical partnership dynamics. Responding to these challenges and to important gaps in partnership scholarship, the Canadian Coalition for Global Health Research conducted a three-year, multi-regional consultation to capture the research partnership experiences of stakeholders in (...) South Asia, Latin America, and sub-Saharan Africa. The consultation participants described persistent inequities in the conduct of global health research partnerships and called for a mechanism through which to improve accountability for ethical conduct within partnerships. They also called for a commitment by the global health research community to research partnership ethics. The Partnership Assessment Toolkit is a practical tool that enables partners to openly discuss the ethics of their partnership and to put in place structures that create ethical accountability. Clear mechanisms such as the PAT are essential to guide ethical conduct to ensure that global health research partnerships are beneficial to all collaborators, that they reflect the values of the global health endeavor more broadly, and that they ultimately lead to improvements in health outcomes and health equity. (shrink)

The Patient Protection and Affordable Care Act (ACA) sets in motion a wide range of programs that substantially affected the health system in the United States and signify a moderate but important regulatory shift in the role of the federal government in public health. This article briefly addresses two interesting policy paradoxes about the ACA. First, while the legislation primarily addresses health care financing and insurance and establishes only a few initiatives directly targeting public health, the (...) ACA nevertheless has the potential to produce extensive public health benefits across the United States population by improving access to health care and services and reducing cost. Essentially, the ACA does not take the explicit form of a public health law but instead strives to advance public health indirectly through its effects. Second, while the ACA does not establish a right to health — or even a right to health insurance — in the United States, it does set in motion a number of significant structural and normative changes to United States law that comport with the attainment of the right to health. Most significantly, key provisions of the bill are designed to improve availability, accessibility, acceptability, and quality of conditions necessary for health, and to prompt the government to respect, protect, and fulfill these conditions. These developments mean that, to a degree, the United States essentially has undertaken the same types of legal and policy steps that a country would be required to take to uphold the right to health without actually recognizing the right to health in any formal or legally binding way.Despite these dual paradoxes and the upside potential for public health improvements resulting from the ACA, the public health impact of the law remains uncertain and will be decided by numerous subsequent regulatory and implementation decisions. The ACA authorizes multiple federal agencies to engage in rulemaking, a process that will largely dictate the systemic and health impacts that will become its legacy. This reality opens up ample opportunity to bolster public health aspects and interpretations of the law, and to simultaneously augment the corresponding components of the right to health. (shrink)

Biobanks are repositories that store human biological materials and their associated data. They are rapidly becoming part of national and international networks and give rise to unique ethico-regulatory issues. Whether consent is informed and whether this term should be used when specimens are collected for biobank research is questionable. Where risks occur, they are usually social and relate to identifiability. Public trust and confidence are important for the success of this type of research. Consensus is growing that governance of biobanks (...) should be harmonised. Controlled specimen and data access agreements are essential. The South African National Health Act and its Regulations, that provide the foundation for the legal framework with regard to human tissue and research in South Africa, are silent on the issue of biobanks and the law lags behind while science and technology advance rapidly. The use of biobank assets will lead to significant benefits in human health and should be encouraged while taking account of the associated ethical, legal and social issues and working towards a balance between these two positions. (shrink)

The main aim of this paper is to investigate the micro and macro predictors of Portuguese willingness to pay (WTP) more taxes to bolster funds channelled to the National Health Service (NHS). An online questionnaire was used to collect data from 584 Portuguese citizens. The statistical analysis was performed through the application of logistic regressions. The research shows that willingness to support increasing taxes depended on socioeconomic, behavioural, and psychological factors. The WTP more taxes to finance the NHS were (...) associated with younger ages, life satisfaction and dispositional optimism, satisfaction with the NHS performance, current perceived risk exposure, and risk orientation. Identifying and understanding the main influencing factors associated with WTP more taxes for NHS is essential to assist policy-makers in developing healthcare reforms. Decision-makers may take this opportunity to improve the NHS since those who ultimately benefit from the measures can provide an additional source of health financing. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Abortion to Abolition: Reproductive Health and Justice in Canada by Martha PaynterRebecca Simmons (bio)Abortion to Abolition: Reproductive Health and Justice in Canada by Martha Paynter Winnipeg, MB: Fernwood Publishing, 2022Martha Paynter's Abortion to Abolition: Reproductive Health and Justice in Canada is a bold, ambitious work that seeks to not only catalog Canada's meandering and often backtracking path toward reproductive justice, but to act as a (...) manifesto for Paynter's own ideas and goals for reproductive justice. The book takes the form of an anthology of stories, divided into chapters, that are grouped according to a certain right; for example, the right to bodily autonomy. This format effectively guides the reader from abortion to abolition. Paynter adroitly starts the book with white feminist favorites such as bodily autonomy and not having children. Then she logically progresses to more radical ideas such as parenting in prison and the total abolition of prisons. The stories in this book are accompanied by warm, colorful illustrations by Julia Hunt. These drawings help the reader visualize the person behind the story and the very real life that was affected by reproductive law and/or social norms. Paynter holds a PhD in nursing, and it is from this background that she writes, seeking to educate nurses and other healthcare professionals alongside a broader readership garnered through her clear, approachable writing style.Chapter 1 introduces the reader to many of the book's key themes by considering the right and need to have bodily autonomy, and the multiple ways this manifests itself in ordinary (and less-ordinary) life. Paynter considers the disparate stories of five women, all fighting in some way for bodily autonomy. The stories cover events of gender-based gun violence, sexual assault, transgender rights in prison, the legalization of sex work, police violence, and institutional racism. Each story recounted by Paynter catalogs tragedies and injustices with blunt and brutal honesty—perhaps to an unnecessary extent. Every horrific fact is laid bare for the readers as they uncover the intricacies of gender-based, imperialist, and racist violence. Paynter has chosen these stories to display the multitude of ways in which people—especially Black, Indigenous, people of color (BIPOC) and minoritized genders—can be willfully wronged by the state and [End Page 209] the criminal justice system, such that the reader must begin to confront the fact that these structures don't seem to exist to benefit or protect the most marginalized in society.Chapter 2 approaches the right not to have children through a number of stories related to contraception, abortion, and family planning. Paynter sketches some of the key points in Canada's journey toward the decriminalization of abortion, from paradoxical trailblazers, such as Dr. Emily Stowe in the 1800s, to the viral memefied content of art protestor iamkarats. While the unequivocal legality of abortion in Canada suggests incredible progressiveness and support for women's rights, Paynter paints a more complex picture through her chosen narratives. Crucially, the inequitable geographical access to abortion, in particular, throughout the huge landmass of Canada suggests that the right to not have children in Canada is not universal. Moreover, Paynter suggests that access is also bounded by financial constraints, finite public funding, and the limited availability of inclusive clinics that prioritize healthcare for LGBTQ2S+ people.Chapter 3 considers the topic of having children; in particular, the right to reproductive technologies and freedom from forced sterilization. Paynter quickly makes clear that while many white feminists might see having and not having children as diametrically opposed, they are two equally essential parts of reproductive justice. Paynter draws attention to the Sexual Sterilization Act of 1928 that was only overturned in 1972. She describes it as part of the "genocidal colonial project" (84), a collection of laws and policies aimed at fulfilling eugenicist, neoimperial ideals of increasing production of the white "race" and promoting the genocide of Indigenous peoples. Furthermore, Paynter argues that evidence of forced sterilization of Indigenous peoples, and other physical violence and neglect, persists to the present day and must be stopped and reparations made for previous harms. Paynter then considers the complex, often-debated case of commercialized surrogacy, which she defines... (shrink)

Veterinarians play an essential role in the animal-based food chain. They are professionally responsible for the health of farm animals to secure food safety and public health. In the last decades, food scandals and zoonotic disease outbreaks have shown how much animal and human health are entangled. Therefore, the concept of One Health is broadly promoted within veterinary medicine. The profession embraces this idea that the health of humans, animals and the environment is inextricably (...) linked and supports the related call for transdisciplinary collaboration. Especially in zoonotic disease control, the benefits of the cooperation between veterinarians and human doctors seem evident. However, applying a One Health approach also makes moral problems explicit. For instance, how should veterinarians deal with situations in which measures to protect public health negatively affect animal health? This creates a conflict of professional responsibilities. To deal with such moral problems and to strengthen the veterinarian’s position, the starting point is a holistic perspective on One Health. We will argue for an ‘encapsulated health’ argument: the best way to safeguard human health is to promote the health of animals and the environment. This also holds for the responsibility of the veterinary profession: to serve public health, the central responsibility of veterinarians should be to be experts in animal health and welfare. We elaborate this point by using a case study on the role of the veterinary profession in antimicrobial resistance policies in the Netherlands. (shrink)

Leadership plays an essential part in creating competitive advantage and well-being among employees. One way in which formal leaders can deal with the variety of responsibilities that comes with their role is to share their responsibilities with team members (i.e., shared leadership). Although there is abundant literature on how high-quality peer leadership benefits team effectiveness (TE) and well-being, there is only limited evidence about the underpinning mechanisms of these relationships and how the formal leader can support this process. (...) To address this lacuna, we conducted an online survey study with 146 employees from various organizations. The results suggest that an empowering leadership style of the formal leader is associated with higher perceived peer leadership quality (PLQ) on four different leadership roles (i.e., task, motivational, social, and external leader). In addition, formal leaders who empower their team members are also perceived as better leaders themselves. Moreover, the improved PLQ was in turn positively related to TE and work satisfaction, while being negatively related to burnout. In line with the social identity approach, we found that team identification mediated these relationships. Thus, high-quality peer leaders succeeded in creating a shared sense of “us” in the team, and this team identification in turn generated all the positive outcomes. To conclude, by sharing their lead and empowering the peer leaders in their team, formal leaders are key drivers of the team’s effectiveness, while also enhancing team members’ health and well-being. (shrink)

BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public (...) responses as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013. The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they (...) might consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

Recent scholarship has considered what, if anything, rich people owe to poor people to achieve justice in global health and the implications of this for international research. Yet this work has primarily focused on international clinical research. Health systems research is increasingly being performed in low and middle income countries and is essential to reducing global health disparities. This paper provides an initial description of the ethical issues related to priority setting, capacity-building, and the provision of (...) post-study benefits that arise during the conduct of such research. It presents a selection of issues discussed in the health systems research literature and argues that they constitute ethical concerns based on their being inconsistent with a particular theory of global justice (the health capability paradigm). Issues identified include the fact that priority setting for health systems research at the global level is often not driven by national priorities and that capacity-building efforts frequently utilize one-size-fits-all approaches. (shrink)

Crowdfunding websites allow users to post a public appeal for funding for a range of activities, including adoption, travel, research, participation in sports, and many others. One common form of crowdfunding is for expenses related to medical care. Medical crowdfunding appeals serve as a means of addressing gaps in medical and employment insurance, both in countries without universal health insurance, like the United States, and countries with universal coverage limited to essential medical needs, like Canada. For example, as (...) of 2012, the website Gofundme had been used to raise a total of 8.8 million dollars for seventy-six hundred campaigns, the majority of which were health related. This money can make an important difference in the lives of crowdfunding users, as the costs of unexpected or uninsured medical needs can be staggering. In this article, I offer an overview of the benefits of medical crowdfunding websites and the ethical concerns they raise. I argue that medical crowdfunding is a symptom and cause of, rather than a solution to, health system injustices and that policy-makers should work to address the injustices motivating the use of crowdfunding sites for essential medical services. Despite the sites’ ethical problems, individual users and donors need not refrain from using them, but they bear a political responsibility to address the inequities encouraged by these sites. I conclude by suggesting some responses to these concerns and future directions for research. (shrink)

It is well established that demographic representation in clinical research is important for understanding the safety and effectiveness of novel therapeutics and vaccines in diverse patient populations. In recent years, the National Institutes of Health and Food and Drug Administration have issued guidelines and recommendations for the inclusion of women, older adults, and racial and ethnic minorities in research. However, these guidelines fail to provide an adequate explanation of why racial and ethnic representation in clinical research is important. This (...) article aims to both provide the missing arguments for why adequate representation of racial and ethnic minorities in clinical research is essential and to articulate a number of recommendations for improving diversity going forward.Appropriate racial and ethnic representation and fair inclusion help (1) increase the generalisability of clinical trial results, (2) equitably distribute any benefits of clinical research and (3) enable trust in the research enterprise. (shrink)

Records the main presentations of an international conference convened to identify the ethical concerns that need to be addressed as WHO renew its health for all policy for the 21st century. The meeting was attended by more than 150 experts in the fields of ethics, human rights, philosophy, medicine, and public health. Their contributions illustrate the many complex issues that need to be addressed when formulating global health policies for the future, particularly in view of striking recent (...) changes in health care, disease patterns, market forces, and political systems. The report opens with a description of the WHO policy framework for achieving four goals in the 21st century: attainment by all of health rights, achievement of global health equity, increase in healthy life expectancy, and access for all to essential quality health services. Against this background, the first section traces the evolution of bioethics to its present concern with the health of populations and identifies some of the most important inequalities that confront contemporary society. Papers in section two discuss key policy issues, including the definition of essential public health functions and their relationship to primary health care, ethical issues raised by the use of Disability-Adjusted Life Years (DALYs) to prioritize health resources, and the potential conflict between policies aimed at reaching vulnerable groups and those seeking to achieve aggregate health benefits. Ethical issues are discussed in subsequent sections, which explore policy implications at global, regional, and national levels. The remaining sections consider the actions needed to ensure that ethical analysis plays a role in the renewal of the health for all strategy and discuss some of the practical requirements for gaining commitment to equity as an essential public health goal for the 21st century. (shrink)

Innovative healthcare technologies may raise ethical concerns which prevent their implementation for fear of unexpected or undesirable outcomes, even before they are introduced into usual clinical practice. Essential to innovation is therefore to analyze benefits and drawbacks from a multidisciplinary point of view (i.e., biomedical, social, financial). Value-based healthcare is currently the most comprehensive theoretical framework to evaluate the benefits of healthcare technologies on patients and society in the longer term. Technically, “the systematic evaluation of properties, effects (...) and/or impacts of health technologies” must be performed by validated procedures of Health Technology Assessment (HTA), supported by early HTA procedures to retrieve preliminary evidence and expert opinions. The aim of this study is to perform an early HTA of germline editing technologies in order to estimate their impact on patients and society, in light of the recent, controversial debate which followed the germline gene editing of human embryos. (shrink)

Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health were developed using in-depth qualitative interviews with editorial staff from nineteen genetics journals, focusing on the methodological and conceptual mechanisms required to make race/ethnicity a genetic variable. As such, these analyses explore how and why race/ethnicity comes to be used in the context of genetic research, set against the background of continuing critiques from anthropology and related human sciences that focus on the social construction, (...) structural correlates and limited genetic validity of racial/ethnic categories. The analyses demonstrate how these critiques have failed to engage geneticists, and how geneticists use a range of essentially cultural devices to protect and separate their use of race/ethnicity as a genetic construct from its use as a societal and social science resource. Given its multidisciplinary, biosocial nature and the cultural gaze of its ethnographic methodologies, anthropology is well placed to explore the cultural separation of science and society, and of natural and social science disciplines. Anthropological insights into the use of race/ethnicity to explore disparities in health suggest that moving beyond genetic explanations of innate difference might benefit from a more even-handed critique of how both the natural and social sciences tend to essentialize selective elements of race/ethnicity. Drawing on the example of HIV/AIDS, this paper demonstrates how public health has been undermined by the use of race/ethnicity as an analytical variable, both as a cipher for innate genetic differences in susceptibility and response to treatment, and in its use to identify at greater risk of becoming infected and infecting others. Clearly, a tendency for biological reductionism can place many biomedical issues beyond the scope of public health interventions, while socio-cultural essentialization has tended to stigmatize and the communities where these are more prevalent. (shrink)

IntroductionHigh healthcare costs make illness precarious for both patients and their families’ economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood.MethodsUsing a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse (...) the acceptability of limiting treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection.ResultsGiving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties—the newborn, family members and health worker—cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people’s substantive freedoms.ConclusionIn settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty. (shrink)

What should be the content of a package of health care services that we would want to guarantee to all Americans? This question cannot be answered adequately apart from also addressing the issue of fair health care rationing. Consequently, as I argue in this essay, appeal to the language of "basic," "essential," "adequate," "minimally decent," or "medically necessary" for purposes of answering our question is unhelpful. All these notions are too vague to be useful. Cost matters. Effectiveness (...) matters. The clinical circumstances of a patient matters. But what we must ultimately determine is what we mutually agree are the just claims to needed health care of each American in a relatively complex range of clinical circumstances. Answering this question will require a public moral conversation, a fair process of rational democratic deliberation aimed at defining both just claims to needed health care and just limits. (shrink)

The United Nations Scientific, Education and Cultural Organisation (UNESCO) has commenced drafting a Universal Bioethics Declaration. Some in the relevant UNESCO drafting committee have previously desired to restrict its content to general principles concerning the application (but not necessarily the goals) of science and technology. As potentially a crucial agenda-setting statement of global bioethics, however, it is arguably important the Universal Bioethics Declaration transparently address major bioethical dilemmas in the field of public health, such as universal access to affordable, (...) essential medicines. Article 13 (Social Responsibility) of the Preliminary Draft Universal Bioethics Declaration states: ‘Any decision or practice shall ensure that progress in science and technology contributes, wherever possible, to the common good, including the achievement of goals such as: (i) access to quality health care and essential medicines, including for reproductive health and the health of children.’Cost effectiveness pricing systems, such as that most notably used in Australia’s Pharmaceutical Benefits Scheme (PBS), arguably represent one of the most scientifically effective mechanisms whereby public monies may be utilised to assist in the provision of medicines for the common good. They contain two essential elements: first, a process of scientific evaluation of objectively demonstrated therapeutic significance, and then, a fiscal lever (the government reimbursement price) attached to that evaluation.It is now well established that the US Pharmaceutical Research and Manufacturers Association (Pharma), through the assistance of the US Trade Representative (USTR), saw the Australia United States Free Trade Agreement (AUSFTA) as an opportunity to fulfill a legislative mandate to ‘eliminate ’ the cost-effectiveness pricing system in Australia’s PBS. One of the most remarkable features of the arguments raised against the PBS in this context was the fact that they made almost no reference to the normative discourse of bioethics or international human rights. Provisions such as Article 13 in UNESCO’s Universal Bioethics Declaration, although they will create no immediate obligations under international law, may play an extremely valuable role in legitimising the use of bioethical and human rights concepts in access to medicines debates surrounding multilateral and bilateral international trade deals such as the AUSFTA. (shrink)

A large body of experimental evidence in the empirical sciences shows that writing about life experiences can be beneficial for mental and physical health. While empirical data regarding the health benefits of writing interventions have been collected in numerous studies in psychology and biomedicine, this literature has remained almost entirely disconnected from scholarship in the humanities and cognitive neuropsychology. In this paper, I review the literature from psychological and biomedical writing interventions, connect these findings to views from (...) philosophy, cognitive neuropsychology and narratology and argue that examining established regularities in how narratives are structured can shed further light on the psychological processes engaged during writing interventions. In particular, I argue that the narratological concept of conflict can be applied to resolve patterns of seemingly conflicting empirical findings in psychological studies. More generally, I propose that an interdisciplinary perspective can provide a broader theoretical basis for understanding the psychological processes underlying the health benefits of autobiographical writing and provide directions for future research in psychology and biomedicine. (shrink)

The general consensus is that reform of medical malpractice law should be part of the health care system's overhaul. Medical malpractice litigation results in the expenditure of tens of billions annually, largely paid out of health care insurance funds and mostly paid to defendants' and plaintiffs' lawyers. By all accounts, this tort law regime ill serves the basic deterrence and compensation goals of civil liability. The causes and magnitude of these failings are disputed, and many typical reform proposals (...) sidestep the basic problems and may do more harm than good. In contrast, we advance a straightforward way to improve both deterrence and compensation. Essentially, the proposal is to remove current legal limitations on the scope of insurance subrogation that bar private and public health care insurers from “buying” the whole of their insureds' potential medical malpractice claims in exchange for lower premiums and taxes and expanded insurance coverage. Our proposal’s benefits accrue regardless of the cause and magnitude of the failings of malpractice law or the further reforms that might be adopted. (shrink)

Recent efforts to introduce competition, consistent with microeconomic theory, into the United States health care system raise questions of distributive justice. Similarities between microeconomic theory and libertarian philosophy suggest the possibility of confusing economic goals of efficiency and cost containment with social goals of equity of access to care. This paper raises the fear that if the two are confused, society may unwittingly abandon any serious effort to ensure that the poor have access to essential types of medical (...) care, because libertarian philosophy cannot justify placing any constraints, however beneficient, on the actual distribution of benefits and burdens of illness resulting from free trade. (shrink)

This book presents the promises of Precision Medicine (PM) and the challenges of its implementation in daily clinical routine, while addressing the anticipated ethical and social implications. It is the first book that critically analyzes the potential and the dilemmas relevant to genomics and precision medicine from healthcare, public health and global perspectives. The nine chapters presented in this book elaborate on pharmacogenomics' crucial role in maximizing the potential benefits and minimizing medication's potential risks in groups of people, (...) especially in cancer treatment and other health conditions. Infectious and non-communicable diseases (NCDs) are also discussed in this book by identifying challenges and ways to overcome them. Essential concepts are addressed, such as health-related benefits and harm to individuals and the broader community, including threats to individual privacy and autonomy, which warrant just distribution of scarce resources. The book also identifies and addresses the lack of competency in the healthcare workforce in the era of PM and discusses the path to laying the ethical foundation for the implementation of PM in healthcare organizations. (shrink)

Introduction Due to the constant scientific and technological development, health professionals are regularly confronted with situations in which there are always therapeutic options, regardless of the severity of the patient’s condition. However, regarding these therapeutic options as feasible in all situations can be harmful, since it is universally accepted that, despite all advances in health, there are inevitable limits and the promotion of some interventions may be useless or futile. Objective To characterize the use of the concept of (...) futility in the health literature. Method Review of the literature following the Scoping Review protocol of the Joanna Briggs Institute. The research was performed in CINAHL, Cochrane, Pubmed, Scopus e Web of Science to identify studies published prior to 2020. Nineteen studies were selected. Results There is no universally accepted definition for the concept of futility. In the literature there are different conceptions for the concept of futility that point to qualitative and quantitative roots and that are associated with ethical dilemmas that make it difficult to conceptualize this concept and make it operational in clinical practice. Conclusion The central elements of the concept of futility include: the diagnosis of futility is closely related to clinical judgment; futility has both quantitative and qualitative roots; futility is always appreciated posteriori; futility is related to the lack of benefit. It is essential to promote a discussion that enables the definition of the concept and that makes it possible to promote ethical principles in care, especially when the inevitable limits of treatments are reached. (shrink)

There are good reasons — both medical and moral — for wanting to redistribute health care resources, and American hospitals and physicians are already involved in the practice of redistribution. However, such redistribution compromises both patient autonomy and the fiduciary relationship essential to medicine. These important values would be most completely preserved by a system in which patients themselves would be the agents of redistribution, by sharing their medical resources. Consequently, we should see whether patients would be willing (...) to share before we resort to surreptitiously redistributing their resources or denying medical care to some who want and need it. We should change our health care payments systems to allow patients to donate their medical benefits to those in need. (shrink)

Although horseback riding is not specifically mentioned in the recommendations for different age groups regarding the level of physical activity necessary for good health, its practice continues to grow in popularity throughout the world. Despite being a minority discipline, it has some characteristics that make it an opportunity for its participants to be active people, so it is important to understand what are the perceived health benefits and barriers to participation. The aim of the study is to (...) describe and analyze the perceived health benefits and barriers in horseback riding among riders categorized by level and age, in order to promote physical activity through these benefits and to overcome the barriers. An online version of the EBBS was used to analyze benefits and barriers. The sample consisted of 2,651 participants in an equestrian event, distributed in four age groups. Perceived benefits and participation barriers to horseback riding were analyzed. The factor analysis identified and confirmed five benefit factors and four barrier factors. Benefit factors were significantly correlated among them but barriers were less interrelated. Higher ages were associated to larger benefits and less barrier effects. Benefit and barrier differences were larger between amateur and professional riders, compared to gender differences. (shrink)