Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes (...) to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. (shrink)

This study’s objective was to understand Colombian adolescents’ experiences and preferences regarding access to sexual and reproductive health services (SRHS), either alone or accompanied. A mixed-method approach was used, involving a survey of 812 participants aged eleven to twenty-four years old and forty-five semi-structured interviews with participants aged fourteen to twenty-three. Previous research shows that adolescents prefer privacy when accessing SRHS and often do not want their parents involved. Such findings align with the longstanding tendency to frame the (...) ethical principle of autonomy as based on independence in decision-making. However, the present study shows that such a conceptualization and application of autonomy does not adequately explain Colombian adolescent participants’ preferences regarding access to SRHS. Participants shared a variety of preferences to access SRHS, with the majority of participants attaching great importance to having their parents involved, to varying degrees. What emerges is a more complex and non-homogenous conceptualization of autonomy that is not inherently grounded in independence from parental involvement in access to care. We thus argue that when developing policies involving adolescents, policymakers and health professionals should adopt a nuanced “relational autonomy” approach to better respect the myriad of preferences that Colombian (and other) adolescents may have regarding their access to SRHS. (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)

Ethical perspectives on regional, rural, and remote healthcare often, understandably and importantly, focus on inequities in access to services. In this commentary, we take the opportunity to examine the implications of normalizing metrocentric views, values, knowledge, and orientations, evidenced by the recent (2022) New South Wales inquiry into health outcomes and access to hospital and health services in regional, rural and remote New South Wales, for contemporary rural governance and justice debates. To do this, we draw (...) on the feminist inspired approach to rural health ethics involving analysis of power relationships developed by Simpson and McDonald and related ideas from critical health sociology. In presenting this analysis, we extend contemporary thought about spatial health inequities and structural violence. (shrink)

Background: The concept of the right to health includes decent conditions of work, housing, and leisure. It can be assessed through the evaluation of access to health services and programs. The creation of the Brazilian Unified Health System expanded access to healthcare for the entire Brazilian population. Aim: This study aimed to understand the use of the Brazilian Unified Health System by pregnant women who live on the Brazil–Paraguay border, whose residents are known as Braziguayans. (...) Methods: We conducted 16 semi-structured interviews with users of prenatal services at Unified Health System units located at the border of the municipalities of Ponta Porã and Pedro Juan Caballero. Ethical considerations: The Research Ethics Committee of the Federal University of Mato Grosso do Sul approved of this research. All participants were provided with project information and signed an informed consent form. Findings: Through content analysis of the interviews, “right to health” and “autonomy, pathways, and access” were two recurrent themes that have arisen. These suggested that Braziguayan women live in conditions of social vulnerability. They do not fully experience the right to healthcare, despite sufficient knowledge about the Brazilian and Paraguayan healthcare systems from which to choose prenatal care. The interviewees acknowledged that Unified Health System use is a right of Brazilian citizens and considered its units to be safe environments. These women also understand the structuring of Unified Health System and the mechanisms of accessing healthcare programs. Conclusion: We can conclude that, despite widely known difficulties, Unified Health System represents, for Braziguayan women, potential access to reliable health services for adequate prenatal and childbirth assistance. (shrink)

_This paper examines the relationship between socioeconomic status (SES), gender, and healthcare service access to address healthcare inequalities in Karachi, Pakistan. Despite notable advancements in expanding healthcare services, disparities persist in the city. The study aims to understand how SES and gender influence healthcare utilization, with the goal of recommending targeted interventions for improving equity and effectiveness. The research employed a mixed-methods approach. A quantitative survey was conducted with 80 respondents using a closed-ended questionnaire based on a Likert scale (...) distributed via social media platforms. Additionally, qualitative insights were gathered through six focus group discussions with participants selected through convenience sampling. Statistical analyses, including chi-square tests and logistic regression, revealed SES as a significant predictor of access to healthcare services in Karachi. Interestingly, the study found no significant differences in SES-based healthcare access by gender, indicating that gender was not a determining factor in this context. The findings underscore the need to address broader socioeconomic barriers to ensure equitable healthcare access. The study has recommended increasing investments in healthcare infrastructure, expanding services for low-income populations, enhancing health literacy programs, improving telemedicine delivery, and fostering multi-sectoral collaboration in health policy development and implementation._. (shrink)

Adolescent sexuality is one of the most important reproductive health issues that confronts healthcare professionals with moral dilemmas and legal issues. In this study, we aim to justify the at-risk adolescents’ regulations on access to key reproductive health services (KRHSs) based on principles of Islamic biomedical ethics and jurisprudence. Despite the illegitimacy and prohibition of sexuality for both girls and boys in Islamic communities, in this study, using 5 principles or universal rules of purpose; certainty, no-harm; necessity; (...) and custom, we argue that first, applying these principles in the context of the no-harm principle can provide the best interests of at-risk adolescents; second, it is permissible to provide KRHSs to these adolescents with their own assent, as long as necessary, only with the intention of preventing or reducing harm. In this framework, while preventing harm, it tries to provide the best interests of at-risk adolescent. Thus, the principle of no-harm requires that the government, by designating the responsibility to healthcare professionals, protects at-risk adolescents from harm, and obliges these professionals to choose and implement the option that best suits adolescents’ interests. (shrink)

In 1989 the Oregon Legislature voted not to wait any longer for national leaders to serve up a solution to the problem of the millions of Americans (450,000 in Oregon) who are uninsured for health care. Under the leadership of Senator John Kitzhaber, President of the Oregon Senate, the lawmakers put together a package of bills designed to bring every Oregonian the security of third party financing for needed health care. The Oregon Plan's key innovation is the idea (...) that, from a societal perspective, some health services can be declared more important than others. From that central idea came the thought that the whole range of health services could be arrayed to reflect social priorities relevant to Medicaid budgeting and the design of new health insurance programs for “the uninsured.”. (shrink)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket (...) co-payments for GPconsultations, with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

The most prominent — and certainly the most controversial — feature of the Patient Protection and Affordable Care Act is the so-called “individual mandate,” which attempts to address the problem of 50 million uninsured by requiring nearly all Americans, beginning in 2014, to obtain health insurance. While expanded access to health insurance has been both the cornerstone and the lightening rod of the ACA, the Act also contains significant public health provisions focusing on, among other things, promoting (...) the availability of prevention and wellness services. Although these public health provisions have been greeted with mixed reviews, there has been very little discussion of what may be the ACA’s most significant public health feature: the preventive services mandate. In a bold stroke, the ACA changes the way evidence-based preventive services will be provided and paid for by private health insurance plans, Medicare, and Medicaid. By requiring these health plans to provide evidence-based preventive services with no out-of-pocket costs, the ACA transforms the U.S.’s public and private health care financing systems into vehicles for promoting public health. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as (...) clinical ethics committees (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

In March 2020, the Portuguese Government issued a remarkable regulation by which irregular migrants who had previously started the regularization procedure were temporarily regularized and thus allowed full access to all social benefits, including healthcare. The Portuguese constitutional and legal framework is particularly generous regarding the right to healthcare to irregular migrants. Nevertheless, until now, several practical barriers prevented full access to healthcare services provided by the national health service, even in situations in which it was legally granted. (...) This decision is not only remarkable in light of the fulfilling of migrants’ rights to health, as imposed by international commitments assumed by, but also in view of the fight against COVID-19. The decision is grounded both on human rights and in public health reasons. The paper is divided in two main parts. In the first one, it analyzes national State obligations with regard to healthcare provision to migrants in irregular situation. In the second part, it analyzes the Portuguese solution, using this case study to discuss the possible mechanisms to comply with such obligations. (shrink)

Many societies, and nearly all wealthy, developed countries, provide universal access to a broad range of public health and personal medical services. Is such access to health care a requirement of social justice, or is it simply a matter of social policy that some countries adopt and others do not? If it is a requirement of social justice, we should be clear about what kinds of care we owe people and how we determine what care is owed (...) if we cannot possibly meet every health need, as arguably no society can. We should be clear about what constitutes appropriate access to that care, given that there are diverse barriers to access. We must also be able to say why we owe these things as a matter of justice, and, of course, different accounts of social justice will bake and serve this cake in different ways. (shrink)

Fragile states and developing countries increasingly contract out health services to non-state providers (NSPs) (such as non-governmental organisations, voluntary sector and private sector). The paper identifies ethical issues when contracts involve devolution of health services to NSPs and proposes procedures to prevent or resolve these ethical dilemmas. Ethical issues were identified by examining processes of contracting out. Health needs could be used to select areas to be contracted out and to identify service needs. Health (...) needs comprise “disease-burden-related needs”, “health-service needs”, and “urgency of health-service needs”. The mix of services should include an analysis of cost-effectiveness. NSPs should be selected fairly, without bias, and conflicts of interest during their work must be avoided. The population’s views must be respected and accountability structures established. Devolved health services should ensure equity of access to healthcare. The services ought to be sustainable and evaluated objectively. Of these issues, conflicts of interest among NSPs and sustainability of health services have not attracted attention in the literature on ethics of health policy. Fair procedures could address these ethical issues—for example, public consultation on issues; decisions based on the public consultation and made on evidence; principles of decisions stated and reasonable; decisions given adequate publicity; a mechanism established to challenge decisions; assurance that mechanisms meet the above conditions; and regular review of the policies. These procedures are complemented by improving self-governance of NSPs, countries’ development of guidelines for devolving health services, and measures to educate the public of the client countries on these issues. (shrink)

This paper reviews the severe visual focus problems of health economists–they have developed a one-sided fixation with equity issues, neglecting the efficiency agenda. The problems of meeting need are not just about access–they will vary with cost and supply. Economists in fact developed a more balanced agenda in the 1970s but have failed to follow it up. The paper defines the triple nationalisation of the National Health Service , and presents evidence that pluralism, using the purchaser/provider split, has (...) become more efficient in long term care, home care and services for people with learning difficulties. Health economics has failed to explore options for using the dynamic forces of choice and competition for improving health services. The paper makes the case for a decision rule that “we should seek the process of health care service supply and development which maximises the delivery of high quality, lower cost user relevant services”. (shrink)

People seeking asylum are at risk of receiving poorer quality healthcare due, in part, to racist and discriminatory attitudes, behaviours and policies in the health system. Despite fleeing war and conflict; exposure to torture and traumatic events and living with uncertainty; people seeking asylum are at high‐risk of experiencing long‐term poor physical and mental health outcomes in their host country. This article aims to raise awareness and bring attention to some common issues people seeking asylum face when seeking (...) healthcare in high‐income countries where the health system is dominated by a Western biomedical view of health. Clinical case scenarios are used to highlight instances of racist healthcare policies and practices that create and maintain ongoing health disparities; limited access to culturally and linguistically appropriate health services, and lack of trauma‐informed approaches to care. Nurses and midwives can play an important role in countering racism in healthcare settings; by identifying and calling out discriminatory practice and modelling tolerance, respect and empathy in daily practice. We present recommendations for individuals, organisations and governments that can inform changes to policies and practices that will reduce racism and improve health equity for people seeking asylum. (shrink)

Health care reform that includes universal coverage could lower a major barrier to care for people of color and ethnic minorities—the inability to pay for care. But universal coverage alone, even with comparable fee-for-service payment or appropriately risk-adjusted capitated reimbursement, will not eradicate the racial and ethnic inequities in health care delivery. Restrictive admissions practices, geographic inaccessibility, culture, racial stereotypes, and the failure to employ minority health care professionals will still create barriers to minority health care. (...) In addition to universal financing, health care reform should include new civil rights legislation to address and reduce these noneconomic barriers to minority health care. (shrink)

To practise ‘fairly and justly’ a clinician must balance the needs of both the many and the few: the individual patient in front of them, and the many unseen patients in the waiting room, and in the county. They must consider the immediate clinical needs of those in the present, and how their actions will impact on future patients. The good medical practice guidance ‘Make the care of your patient your first concern’ provides no guidance on how doctors should act (...) when they care for multiple patients with conflicting needs. Moreover, conflicting needs extend far past simply those between different patients. At an organisational level, financial obligations must be balanced with clinical ones; the system must support those who work within it in a variety of roles; and, finally, in order for a healthcare service to be sustainable, the demands of current and future generations must be balanced.The central problem, we propose, is that there is no shared philosophical framework on which the provision of care or the development of health policy is based, nor is there a practical, fair and transparent process to ensure that the service is equipped to deal justly with new challenges as they emerge. Many philosophers have grappled with constructing a set of principles which would lead to a ‘good’ society which is just to different users; prominent among them is Rawls.Four important principles can be derived using a Rawlsian approach: equity of access, distributive justice, sustainability and openness. However, Rawls’ approach is sometimes considered too abstract to be applied readily to policymaking; it does not provide clear guidance for how individuals working within existing institutions can enact the principles of justice. We therefore combine the principles derived from Rawls with Scanlonian contractualism: by demanding that decisions are made in a way which cannot be ‘reasonably rejected’ by different stakeholders, we ensure that conflicting needs are considered robustly.We demonstrate how embedding this framework would ensure just policies and fair practice. We illustrate this by using examples of how it would help prevent injustice among different socioeconomic groups, prevent intergenerational injustice and prevent injustice in a crisis, for example, as we respond to new challenges such as COVID-19.Attempts to help individual doctors practise fairly and justly throughout their professional lives are best focused at an institutional or systemic level. We propose a practical framework: combining Scanlonian contractualism with a Rawlsian approach. Adopting this framework would equip the workforce and population to contribute to fair policymaking, and would ultimately result in a healthcare system whose practice and policies—at their core—were just. (shrink)

Researchers and sponsors are required to assist HIV prevention trial participants to remain HIV-uninfected by ensuring access to prevention services. Ethics guidelines require that these HIV risk-reduction services be state of the art. This and related ethics recommendations have been intensely debated. This descriptive study aimed to identify actual HIV prevention practices for two HIV vaccine trials at five South African sites, to explore whether actual practices meet guideline recommendations and to discuss implications for practices and ethics guidelines. (...) Practices were examined through a review of site documents and interviews with site staff and network representatives, as well as community advisory board and research ethics committee representatives. A thematic analysis of HIV prevention practices, perspectives and perceived challenges was undertaken. Findings indicated that there was a high degree of correspondence between actual practices in South African HIV vaccine trials and guideline recommendations. Key challenges for implementing prevention services were identified as partnerships, provider-promotion of services and participant uptake of services. Practices deviated most from guidelines with regard to the description of prevention plans in informed consent forms. Recommendations are made for both practices and ethics guidelines. (shrink)

Resumen Ésta es la primera traducción al español de las guías “Atención después de la investigación: un marco para los comités de ética de investigación del National Health Service (NHS) (borrador versión 8.0)”. El documento afirma que existe una fuerte obligación moral de garantizar que los participantes enfermos de un estudio clínico hagan una transición después del estudio hacia una atención de la salud apropiada. Con “atención de la salud apropiada” se hace referencia al acceso para los participantes a (...) la atención de la salud, proporcionada principalmente por el National Health Service (en adelante NHS), el sistema de salud del Reino Unido, y/o a la intervención en estudio, también llamada producto o tratamiento en investigación. Las guías “Atención después de la investigación” están dirigidas principalmente a los miembros de los 79 comités de ética de investigación del NHS y a quienes presentan sus estudios de investigación ante estos comités. Se trata de un documento borrador muy avanzado, trabajado en numerosas reuniones, durante más de 3 años, que ha sido discutido por participantes de estudios y miembros de la comunidad, miembros y presidentes de comités de ética de investigación del Reino Unido, especialistas internacionales en ética de la investigación, representantes de la industria y otras partes interesadas. La redacción de las guías es producto de la colaboración de Neema Sofaer y Penney Lewis, ambas investigadoras del King’s College London, en el Centre of Medical Law and Ethics del Dickson Poon School of Law, y Hugh Davies, Asesor en Ética de la Investigación de la Health Research Authority (HRA) del NHS. El traductor del presente documento, Ignacio Mastroleo, participó del workshop en la Fundación Brocher (Ginebra, Suiza, diciembre de 2011) donde se revisó el borrador versión 7.0 y contribuyó en la revisión del borrador de la versión 8.0 durante el 2012. -/- Abstract This is the first Spanish translation of the guidelines “Care after research: a framework for NHS RECs (8th draft)”. The document states that there is a strong moral obligation to ensure that participants in a clinical study who are ill transition after the study to appropriate healthcare. The terms "appropriate healthcare" refer to participants’ access to health care, mainly provided by the National Health Service (NHS), the health system in the UK, and/or to the intervention study also named investigational treatment or product. The guides "Care after research" are mainly directed to members of the 79 NHS committees of research ethics (RECs) and to those who submit their research to these committees. This is a very advanced draft document, worked in several meetings, for more than three years, that has been discussed with study participants and community members, members and chairs of RECs in the UK, international specialists in research ethics, industry representatives and other stakeholders. The drafting of the guidelines is the result of the collaboration of Neema Sofaer and Penney Lewis, both researchers at King's College London, at the Centre of Medical Law and Ethics of Dickson Poon School of Law, and Hugh Davies, Research Ethics Advisor of the Health Research Authority (HRA) of the NHS. The translator of this document, Ignacio Mastroleo, attended the workshop at the Brocher Foundation (Geneva, Switzerland, December 2011) where draft version 7.0 was revised and contributed in the revision of draft version 8.0 during 2012. (shrink)

Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service (...) , and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Background: With the number of young people with medical complexity increasing, an increasing number must navigate the transition to adulthood. This transition, in part, involves a situational transition in which young people and their families must access new services in the adult system. Objectives: To explore how societal ideologies, communities, and organizations represent the foundation of barriers to access to services. Research Design: The discussion in this paper, framed within a social justice perspective, outlines barriers to access to (...) services at the societal and community levels including societal ideologies, differences in philosophies of care in pediatric and adult care, physical environments, and availability of services. Ethical Considerations: Since this is an exploratory discussion paper, no ethical approval was required. Findings and Conclusion: Based on analysis of the literature from a social justice perspective, it is suggested that the adult health care and social service systems do not provide the supports and services necessary to empower young people and their families to achieve their goals and maintain their health and quality of life. It is, thus, an ethical issue that the transfer from pediatric to adult services is occurring in the absence of appropriate services. Recommendations at the individual, community and policy levels highlight how nurses can address this ethical issue to promote more equitable access to services. (shrink)

This paper falls into three parts. In the first part I will briefly review the current process of reform that the United Kingdom National Health Service is undergoing. Two fundamental motivations for reform, the desire for increased efficiency and for an increased responsiveness to patients' needs and preferences will be discussed in greater detail. The second part attempts to provide a perspective on the moral debate concerning health care reform by introducing the distinction between ‘civil association’ and ‘enterprise (...) association’ as proposed by the political philosopher Michael Oakeshott. In the final part, this distinction will be used to analyze the moral and political constitution of the National Health Service, in order to establish the relevance and scope of concerns with efficiency and patient and public accountability. A framework within which the current reforms can be assessed is thereby outlined. Keywords: access to health care, civil association, enterprise association, freedom of choice, health care reform, United Kingdom National Health Service CiteULike Connotea Del.icio.us What's this? (shrink)

The number of homebound individuals in the United States is on the rise, causing health-care professionals to expand in-home health services to help meet the increased demand. Due to the prevalence of feelings of isolation and depression in this population, it is imperative that mental health professionals join this effort to increase access to mental health services. Delivering psychotherapy in clients’ homes presents many advantages to these homebound individuals, but there is a dearth of (...) literature addressing how therapists should handle unique ethical issues that arise in this type of setting. This article addresses ethical considerations and guidelines for in-home provision of mental health services. General ethical issues related to home-based psychotherapy include boundaries, confidentiality and privacy, competency, insurance coverage, and autonomy. Issues pertaining to different categories of homebound individuals, including persons with agoraphobia, chronic illnesses, and older adults, are then discussed in turn. Recommendations on how to best manage these issues by applying the American Psychological Association’s, the American Counseling Association’s, and the National Association of Social Workers’ Ethics Codes are provided. (shrink)

A clinical trial on mitochondrial replacement therapy is currently being conducted and if this technique proves effective, National Health Service England will fund MRT through the highly specialised services funding stream. This paper considers whether MRT should be publicly funded by the NHS. Given the current financial pressure the NHS is experiencing, a comprehensive discussion is essential. There is yet to be a thorough discussion on MRT funding, perhaps because this is a small-scale issue and presumed to be (...) covered by the HSS budget. However, the source of funding has not been confirmed due to the trial’s incompletion. Upon its completion, reasoned decisions need to be made over the allocation of scarce NHS resources. It is therefore important to consider the following arguments in advance. Three arguments given against NHS funding of MRT will be evaluated. The first argument against NHS funding examines the HSS overspending its budget in an underfunded NHS, suggesting funding must be carefully reprioritised. Second, the ethical issue of allowing public access to a technique with insufficient evidence behind it will be explored. The final point considers the option of privately funding MRT and how this would affect the treatment’s development. After illustrating the weaknesses of such arguments, it will be concluded that MRT should be funded by the NHS. (shrink)

Pregnancy care is chargeable for migrants who do not have indefinite leave to remain in the UK. Women who are not ‘ordinarily resident’, including prospective asylum applicants, some refused asylum-seekers, unidentified victims of trafficking and undocumented people are required to pay substantial charges in order to access antenatal, intrapartum and postnatal services as well as abortion care within the National Health Service. In this paper, we consider the ethical issues generated by the exclusion of pregnancy care from the (...) raft of services which are free to all. We argue that charging for pregnancy care amounts to sex discrimination, since without pregnancy care, sex may pose a barrier to good health. We also argue that charging for pregnancy care violates bodily autonomy, entrenches the sex asymmetry of sexual responsibility, centres the male body and produces health risks for women and neonates. We explore some of the ideological motivations for making maternity care chargeable, and suggest that its exclusion responds to xenophobic populism. We recommend that pregnancy care always be free regardless of citizenship or residence status, and briefly explore how these arguments bear on the broader moral case against chargeable healthcare for migrants. (shrink)

The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published in March of 1983 its Report, Securing Access to Health Care: The Ethical Implications of Differences in the Availability of Health Services . Concluding that there are "ethical obligations" on behalf of society which are balanced by individual obligations, the Report provides an ethical framework for ensuring "ultimate responsibility" of the Federal government to arrange for equitable access to health (...) and to a fair share of cost. In doing so the Report neither makes justice nor beneficence the prime moral principle in public health care, it rather calls for a common sense approach in "approximating adequacy". But how to define equality without creating uniformity in a society rich in its diversity, including attitudes towards health? Keywords: justice, beneficence, right to health care, equality, distribution CiteULike Connotea Del.icio.us What's this? (shrink)

The position concerning the mental health of black and minority ethnic women in Britain is closely linked to that of their respective communities in general. Issues concerning inappropriate care and treatment; lack of access to services; and service delivery based on assumptions and stereotypes govern the way in which black women and men experience mental health care and treatment. This article discusses the specific nature of black women's position, within the wider context of black communities’ experience as (...) a whole. While the term ‘black and minority ethnic communities’ covers a range of differing communities, the focus here is on the experiences of women from African, African-Caribbean and Asian communities. In relation to women in these communities, reference is made to issues concerning: (1) older women; (2) women of mixed heritage; (3) women's roles as care-givers; and (4) the position of refugees and asylum seekers. The article also explores and outlines the importance of self-help strategies including, e.g. befriending and counselling and the role of religion and spirituality in enabling many black people to manage their mental distress. (shrink)

As the largest labour flow in human history, the recent rise in migration in China has opened up unprecedented opportunities for millions of Chinese to rearrange their lives. At the same time, this process has also posed great challenges to Chinese migrants, especially female migrants, who not only face a bias against ‘outsiders’ but also have a greater need for reproductive health-related services in their migratory destinations. Based on data collected via multiple sources in Shanghai, China’s largest metropolis, (...) this study profiles the changing characteristics of female migrants, presents data on self-reported symptoms of reproductive health-related problems and knowledge on reproductive health issues, compares maternal and child health measures between migrants and local residents, and examines factors related to reproductive health knowledge and migrants’ access to health care in urban china. Results of this study show a relatively low level of self-reported reproductive health problems among female migrants, coupled with a relatively high level of ignorance in knowledge related to STD. both self-reported health status and knowledge of reproductive health are related to migrants’ educational attainment and length of stay in the urban destination. This study also finds ample evidence that female migrants’ access to urban health care is limited by a number of institutional barriers. (shrink)

In everyday conversations, people put forward versions of events and provide supporting evidence to build a credible case. In environments where there are potentially competing versions, case-building may take a more systematic format. Specifically, we conducted a rhetorical analysis to consider how in child mental health settings, families work to present a credible ‘doctorable’ reason for attendance. Data consisted of video-recordings of 28 families undergoing mental health assessments. Our findings point to eight rhetorical devices utilised in this environment (...) to build a case. The devices functioned rhetorically to add credibility and authenticate the case being built, which was relevant as the only resource available to families claiming the presence of a mental health difficulty in the child was their spoken words. In other words, the ‘problem’ was something constructed through talk and therefore the kinds of resources used were seminal in decision-making. (shrink)

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital (...) staff. Beyond access and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development. (shrink)

A societal goal to which more and more people in the United States appear to be committed--at least officially--is the assurance of comprehensive health services for every person irrespective of income or geographic location. This paper offers one possible moral justification of the goal. It does so by attempting to apply various standard conceptions of social justice to considerations about health care and to reflect about the reasons why some of the conceptions seem more relevant than others. (...) Several institutional implications are also identified. (shrink)

Health care in prison and particularly the health care of older prisoners are increasingly important topics due to the growth of the ageing prisoner population. The aim of this paper is to gain insight into the approaches used in the provision of equivalent health care to ageing prisoners and to confront the intuitive definition of equivalent care and the practical and ethical challenges that have been experienced by individuals working in this field. Forty interviews took place with (...) experts working in the prison setting from three Western European countries to discover their views on prison health care. Experts indicated that the provision of equivalent care in prison is difficult mostly due to four factors: variability of care in different prisons, gatekeeper systems, lack of personnel, and delays in providing access. This lack of equivalence can be fixed by allocating adequate budgets and developing standards for health care in prison. (shrink)

Health literacy is a contemporary term used in health services, often used to describe individuals requiring additional support to access, understand and implement health service information. It is used as a measure of self‐efficacy in chronic disease models of care such as the nurse navigator service. The aim of the research was to investigate the concept of health literacy in the nurse navigator service, particularly in relation to the defined role objective of person‐centred care. Fairclough's (...) critical discourse analysis was used to analyse the experiential, relational and expressive elements of texts, investigating the hidden truths which are represented in discourse. Texts from a variety of health service micro‐, meso‐ and macro‐hierarchical sources were selected for analysis using the nurse navigator evaluation data set and other associated texts. Health literacy in the nurse navigator service is a technology of government used to increase participation of individuals in their own health and well‐being. The discourse suggests that health literacy responsibilises both individuals and nurses and is discursively formed within a matrix of rational choice. In this context, health literacy contributes to structural vulnerability. (shrink)

Asylum-seeking and refugee women (ASRW) are population groups characterized by diverse social, economic and legal backgrounds as well as diverse needs. Their backgrounds of forced migration have a profound impact on their overall health, including their sexual and reproductive health (SRH). In Europe, the SRH needs of ASRW are usually more pressing than those of the host country population. In the context of refugee health, it is important to distinguish between asylum seekers and statutory refugees, as asylum (...) seekers have distinct needs and often limited rights in their host country. Yet both groups face many barriers in accessing national health services. This article addresses the issue of entitlements to health services for asylum-seeking women in Europe, and highlights the wide range of difficulties of both asylum-seeking and refugee women in accessing (sexual and reproductive) health services. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental (...) class='Hi'>Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

This chapter contains section titled: I Equality of Resources II Justice in Health Care III Why Universal Access Requires In‐kind Transfers IV Conclusion Acknowledgement.

The Patient Protection and Affordable Care Act of 2010 purportedly assures almost all Americans of the right to health insurance coverage. The long-term success of this legislation in improving the public’s health in the United States will likely hinge in no small part on the degree to which statutorily establishing a right to health insurance coverage translates into actual timely, meaningful access to health services, particularly physician services, for specific individuals.

ABSTRACT Many recent articles argue that participants who seroconvert during HIV prevention trials deserve treatment when they develop AIDS, and there is a general consensus that the participants in HIV/aids treatment trials should have continuing post‐trial access. As a result, the primary concern of many ethicists and activists has shifted from justifying an obligation to treat trial participants, to working out mechanisms through which treatment could be provided. In this paper I argue that this shift frequently conceals an important assumption: (...) that if there is an obligation to supply treatment, then any party who could provide it may be prevailed upon to discharge the obligation. This assumption is false. The reasons why trial participants should get ART affect who has the duty to provide it. We should not burden governments with the obligations of sponsors, nor researchers with the obligations of the international community. And we should not deprive a group of treatment because their need is less salient than that of research participants. Insisting otherwise may lead to people being wrongfully deprived of access to antiretrovirals. (shrink)

The outbreak of the COVID-19 pandemic had an impact on the global economy, including the provision of health services, with medical facilities and patients cancelling or postponing medical appointments. An alternative to in-person appointments was through the available forms of telemedicine. Scientific reports around the world have suggested that the accessibility and quality of health services declined. The aim of this study was to investigate the accessibility and quality of health services in (...) Poland and to verify whether there were differences between men and women in this respect. The study was based on the authors’ own survey questionnaire filled in by 265 respondents, including 181 women, 82 men, and 2 persons without a defined gender. The study revealed that during the COVID-19 pandemic, the accessibility and quality of health services declined. Additionally, women were more likely to use general and specialist health services than men, but a comparison of changes in the assessment of accessibility and quality of services by gender revealed no differences in the assessment of accessibility and quality. (shrink)

The Republic of Ireland has some of the most restrictive abortion legislation in the world which grants to the ‘unborn’ an equal right to life to that of the pregnant woman. This article outlines recent developments in the public discourse on abortion in Ireland and explains the particular cultural and religious context that informs the ethical case for access to abortion services. Our perspective rests on respect for two very familiar moral principles – autonomy and justice – which are (...) at the centre of social and democratic societies around the world. This article explains the context for the deployment of these concepts in order to support the claim that the current legislation and its operationalisation in clinical practice poses serious risks to the health, lives and well-being of pregnant women, tramples on their autonomy rights and requires of them a self-sacrifice that is unreasonable and unjust. (shrink)

How should medical services be distributed within society? Who should pay for them? Is it right that large amounts should be spent on sophisticated technology and expensive operations, or would the resources be better employed in, for instance, less costly preventive measures? These and others are the questions addreses in this book. Norman Daniels examines some of the dilemmas thrown up by conflicting demands for medical attention, and goes on to advance a theory of justice in the distribution of (...) health care. The central argument is that health care, both preventive and acute, has a crucial effect on equality of opportunity, and that a principle guaranteeing equality of opportunity must underly the distribution of health-care services. Access to care, preventive measures, treatment of the elderly, and the obligations of doctors and medical administrations are fully discussed, and the theory is shown to underwrite various practical policies in the area. (shrink)

The era of managed care has arrived with portents of a new calculus to integrate cost and quality in health services. These devises such as “report cards” and “outcome measures” place performance against expectations and thus are expected to gauge the value of specific elements of healthcare delivery. From such measures and comparisons, the public will be able to better judge the appropriate, effective, and attractive place to seek their medical services. What is now widely used by (...) utilization review, guiding reimbursement decisions and allowances for the length of hospital stays, will soon have a more prosperous future as general guidelines built into the very framework of managed care agreements. (shrink)

Travelling internationally to acquire medical treatments otherwise unavailable or inaccessible in one’s home country is not a novel concept. Conventionally, such medical travel largely entailed patients from developed countries or wealthy patients from the developing world seeking care in Western facilities like the Mayo Clinic in the U.S. and myriad private clinics along Harley Street in London, England. What is different about the topical phenomenon known as “medical tourism” is the growing trend of health services export in the (...) opposite direction. The number of patients travelling from the developed world to low- and middle-income countries for treatments has ballooned in recent years, primarily driven by difficulties with accessing affordable care at home. According to a liberal estimate by the Deloitte Center for Health Solutions, the number of Americans travelling abroad for care rose from 750,000 in 2007 to 1.6 million in 2012. On the flip side, Thailand reportedly treated a total of 1.3 million foreign nationals in 2007, which represented a 16% leap from 2001. (shrink)

This article describes challenges of conducting an HIV prevention program involving 40 male and female participants ages 12–18 in Hammanskraal, South Africa, aimed at increasing awareness and knowledge of laws protecting children’s sexual health rights and access to services through a culturally based “study circle” format. Challenges highlighted by the project included Institutional Review Board approval of youth consent procedures, cooperation and coordination with local policymakers, the need to modify presentation materials to youths’ comprehension levels, availability of youth-based (...) sexual health service providers, and cultural ambiguity over parental involvement in youth health care decisions and laws pertaining to sexual relationships among minors. (shrink)

Refining the model for an emergency department‐based mental health nurse practitioner outpatient service The mental health nurse practitioner (MHNP) role based in the emergency department (ED) has emerged in response to an increase in mental health‐related presentations and subsequent concerns over waiting times, co‐ordination of care and therapeutic intervention. The MHNP role also provides scope for the delivery of specialised primary care. Nursing authors are reporting on nurse‐led outpatient clinics as a method of healthcare delivery that allows (...) for enhanced access to health‐care, particularly following hospital discharge. However, due to a lack of in‐depth substantiation, this mode of service delivery requires more thorough investigation. This study describes the refinement phase undertaken before the implementation and pilot evaluation of a formalised and structured MHNP outpatient service in the ED of a large inner‐city hospital in Sydney, Australia. An expert advisory panel (EAP) consisting of key local informants was convened to provide feedback on and refinement to the proposed model. This related to issues such as target population, structure and process considerations, outcome measures and interface within the overall health service. Findings from the EAP meeting are presented and discussed. The importance of linking methods with the appropriate methodology in evaluating a healthcare program is highlighted. (shrink)