Machine generated contents note: Introduction. -- Acknowledgments. -- The Author. -- 1 Ethical Theories and Bioethics in a Global Perspective. -- Theories of Ethics. -- Are Theories of Ethics Global? -- Can Theories of Ethics Encourage People to Do the Right Thing? -- 2 Autonomy and Informed Consent in Global Perspective. -- Ethical Principles and Practical Issues of Informed Consent. -- Does Informed Consent Really Matter to Patients? -- Is Informed Consent a Universal Principle or a Cultural Value? -- 3 (...) Withholding or Withdrawing Treatment and Physician-Assisted Suicide. -- Withholding or Withdrawing Treatment at the End of Life. -- Assisting Patients in Committing Suicide. -- 4 Ethical Issues in Reproductive Health. -- Ethics of Abortion in Different Times, Places, and Cultures. -- Current Ethical Issues in Abortion. -- Assisted Reproductive Technology and Stem Cell Research. -- Emergency Contraception. -- Ethics of Imposing Conditions on Funding. -- 5 Ethical Issues of Female Genital Mutilation. -- The Facts About FGM. -- FGM as a Challenge to Ethical Relativism. -- Ethics of FGM for Adult Women. -- 6 Ethical Issues of Research with Human Subjects. -- Background Information and the Belmont Report. -- Autonomy and Voluntary Informed Consent. -- Beneficence and Cost-Benefit Analysis. -- Issues of Justice and Fairness for Human Subjects. -- 7 The Right to Health Care, and Ethical Obligations to Provide Care. -- Is There an Ethical Right to Health Care? -- Ethical Obligations of Health Care Professionals. -- Ethical Obligations of for-Profit Health Care Providers. -- 8 Ethical Issues in Rationing and Allocation of Limited Resources. -- Levels of Allocating Resources. -- Methods of Rationing Health Resources. -- Comparative Effectiveness Research and Cost-Effectiveness Analysis. -- 9 Ethical Issues of Health Insurance and Health System Reform. -- Ethical Issues in Financing Health Services and Designing Insurance Systems. -- Fundamental Values of Health Systems. -- 10 Ethical Issues in the Movement of Patients Across National Borders. -- Ethical Duties to Provide Health Care to Undocumented Aliens. -- Ethical Issues in Medical Tourism. -- 11 Ethical Issues in the Movement of Health Care Professionals Across National Borders. -- Ethical Issues in the Migration of Health Professionals. -- Proposed Solutions and Their Ethical Implications. -- Fair Treatment of Health Care Workers from Other Countries. -- 12 Corruption and Informal Payments in Health Systems. -- Payment of Informal Fees by Patients and Their Families. -- Is Corruption Bad for Your (and Other People's) Health? -- References. -- Index. (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 (...) class='Hi'>Health Service , and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. (shrink)

Protection of human participants is a fundamental facet of biomedical research. We report the activities of a health service research study in which there were three institutional review boards (IRBs), three legal departments and one research administration department providing recommendations and mandating changes in the study methods. Complying with IRB requirements can be challenging, but can also adversely affect study outcomes. Multiple protocol changes mandated from multiple IRBs created a research method that was not reflective (...) of how substance use screening would be performed in a clinical setting. There was direct conflict between the IRBs' perceptions of participants' protection with the researchers' need to use research methodology that assures the clinical relevancy of results. (shrink)

A commentary on “‘Ever Vigilant’ in ‘Ethically Impossible’: Structural Injustice and Responsibility in PHS Research in Guatemala,” from the May‐June 2013 issue.

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)

It is nearly 20 years since Tony Hope wrote an editorial in this journal on Empirical Medical Ethics,1 arguing for both a recognition of the increasing amount of work being done in ‘empirical ethics’ and for its importance as a new direction for medical ethics research. Since then empirical ethics has flourished, with debates over the role of ‘empirical’ data in ethical reasoning producing a growing body of literature and the JME and other bioethics journals regularly publishing empirical studies. (...) While bio/medical ethics has grappled with ‘incorporating’ or using more empirical data in ethical analysis, with varying degrees of success, and some criticism, there has not been a corresponding willingness of more empirical disciplines to embrace ethical analysis. This is a particular lack for applied research areas that see their role as predominately influencing policy and practice, such as health services research. Health services research ‘is the integration of epidemiological, sociological, economic, and other analytic sciences in the study of health services.’ Whose ‘main goals … are to identify the most effective ways to organize, manage, finance, and deliver high quality care; reduce medical errors; and improve patient safety’.2 Health services research brings together a wide variety of disciplines and would seem ideally placed to include ethics. However, if you search health services research journals and conference programmes there is very little consideration of ethics as a substantive topic and often scant attention paid to the ethical issues that might be raised by an intervention or policy. Ethics and ethical issues are generally confined to discussions over priority setting, and occasionally health technology assessment, with other areas of health service research seldom engaging in ethical debate. In the Encyclopaedia of Health Services Research,3 ethics …. (shrink)

Many practices available for use in health service psychology are ineffective or harmful. How we describe these practices is important to scientific discourse and science communication with policy-makers and the general public. The label “pseudoscience” is typically applied in these cases, though the meaning of pseudoscience varies widely creating a quagmire for transparent and accurate communication. To clarify this issue, we review several prominent definitions of pseudoscience as well as consider how the term is used amongst psychology scholars and (...) science-communicators. We define two additional terms adapted from the medical literature, contemporary and alternative psychotherapies and low-value practices, and discuss their strengths and limitations. Finally, we recommend the broader category of low-value practices for use due to its definitional clarity, lack of competing definitions, and potential for clarifying research programs. (shrink)

In Turkey, city hospitals play a significant role in the provision of healthcare services. This survey looked at the level of satisfaction with various hospitals. In the study, social media was one of the tools. The hospitals' websites were used to compile satisfaction ratings. After that, content analysis was used to look at the hospitals' indicators for technological, communicative, and physical quality. The study considered hospitals with 1200 beds or greater as a sampling factor in hospital selection. Hospitals are (...) classified with the designation "Hospital" in objectives of information security and ethics. Encoding was carried out like Hos1, Hos2, Hos3, etc. for every hospital. The results of this article, which are considered significant research findings, are believed to had an important effect on improving hospital service requirements. Additionally, improvements can be made in health service delivery in line with the opinions of stakeholders. Additionally, the importance of patient satisfaction in terms of health tourism was emphasized. (shrink)

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” While some (...) authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors. (shrink)

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This (...) article proposes the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly sa...

The Norwegian Parliament has decided to give priority to ethics in municipal health services. This priority is supposed to raise competence in ethics within municipal health services. As part of the national project, the participating municipalities were encouraged to develop and carry out local projects. In this article, we present a local ethics project in one of the participating municipalities in central eastern Norway. The local project for raising competence in ethics was carried out in cooperation (...) with researchers at the Centre for Medical Ethics (CME) at the University of Oslo. Most people agree that ethics are important in health services. However, there are many ways to increase competence in ethics and to stimulate ethical reflection. In this article we present a broad overview of this local ethics project, but special focus will be put on presenting the actions that have been used for increasing the level of ethical competence and stimulating ethical reflection among the participants. We describe our evaluation of the project and the research we carried out. Explanations will be given for the thought process behind the decisions that were made. (shrink)

A significant number of inmates with mental illness reside within the New York State Department of Corrections (NYSDOCS). New York State has taken the initiative to provide mentally ill inmates with necessary services through a collaboration of the New York State Department of Correctional Services and the New York State Office of Mental Health (NYSOMH). The collaboration results in a mental health delivery system that provides many essential services to mentally ill inmates. This paper focuses (...) on the organization of mental health services within NYSDOCS, best practices, past and current litigation, and staff responsibilities. As the population of mentally ill inmates continues to grow, implications for the Human Services professions of OMH and DOCS needs to continue to address and provide adequate mental health care and resources for this special population. (shrink)

Racial and ethnic variables are routinely used in health services research. However, there is a growing debate within nursing and other disciplines about the usefulness of these variables in research. A qualitative study was undertaken (July 2004 – November 2004) to ascertain how researchers conceptualize and operationalize racial and ethnic data. Data were derived from interviews with 33 participants in academic health centers in differing geographic regions. Content analyses extracted manifest and latent meanings to construct (...) categories depicting respondents' understandings of race and ethnicity in research. Race and ethnicity held several meanings but the subtext was often not clear because these terms were not operationalized. Measuring race and ethnicity quantitatively necessitated uniform classifications thus it was often necessary to impose a single racialized identity. Respondents recognized the problems with racial and ethnic variables but the majority still believed these variables were necessary and useful. Several researchers understood that racial and ethnic variables were used in ways that may stigmatize the populations studied. These respondents collected data on variables other than race and ethnicity to ascertain the causes of health differentials. The policy recommendation calls for a shift in thinking about how to use racial and ethnic variables in research. (shrink)

This book is a collection of fictionalized case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines and their implementation "on the ground." The cases focus on "relational" ethics: ethical actions and ideas that continuously emerge through relations with others, rather than being determined by (...) bioethics regulation. They are based on stories and experiences collected by a group of social anthropologists who have worked with leading transnational medical research organizations across Africa in the past decade. Accompanied by guidelines, discussion questions and selected further readings, the book provides a flexible resource for training and self-study for people engaged in health research with, universities, international collaborative sites and NGOs and for everyone interested in the realities of global health research today.". (shrink)

O’BRIEN T and ACKROYD S. Nursing Inquiry 2012; 19: 39–50 Understanding the recruitment and retention of overseas nurses: realist case study research in National Health Service Hospitals in the UKThis paper illustrates one of the possible applications of critical realist ideas to the analysis of health services, in the use of comparative case study research design, to elucidate the causal social processes underlying events. In the research reported here, a comparative research design was (...) used as a basis for improving our understanding of the processes involved in the assimilation of overseas nurses (OSN) into the salient long‐term workforce of the National Health Service (NHS) hospitals in the UK. The work brought to light the salient experiences of overseas nurses during their initial work in the NHS hospitals, and these were used as a basis for developing an account of the general mechanisms typically underlying the recruitment and assimilation at work. The authors conclude that successful assimilation is often hindered by the presence of occupational closure mechanisms, by which home nurses effectively excluded recruits from participation and promotion; these mechanisms, which articulate with everyday racism, threaten successful assimilation for obvious reasons. If the treatment recruits receive does not lead to withdrawal, it is because they typically have very strong economic motives to continue despite unfavourable and sometimes inhumane treatment. Thus, the research offered substantial reasons why recruitment policies should be reviewed by policy‐makers. (shrink)

Over the past three decades, two separate federal regulatory structures have emerged, each seeking to assure separate aspects of the integrity and ethics of research conducted using federal funding. One set of regulations is described in the Public Health Service Policies on Research Misconduct and relates to research misconduct, defined as consisting of fabrication of data or results, falsification of data and results, or plagiarism, in accordance with the federal‐wide definition adopted by the Office of Science (...) and Technology Policy. The second set of regulations, set forth in the Department of Health and Human Services regulations on the protection of human subjects (known as the “Common Rule”), prescribes a set of ethical and procedural protections for research involving human subjects.These two sets of research regulations are distinguished from each other by having different foci of enforcement, priorities of protection, oversight officials, oversight procedures, seizure of evidence, standards of proof, expectations of privacy, and appeal procedures for researchers who are subject to adverse findings and penalties. These differences are significant and fundamental. They complicate the process of compliance for institutions and researchers, who are expected to adhere to both sets of standards for the same federally funded research activities in research with human subjects. Compliance is especially complicated when suspected violations of both sets of standards must be investigated and resolved concurrently. This document represents an effort to provide institutions and individuals with practical suggestions as they try to comply with both sets of regulations. (shrink)

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

Systematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health , - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.

The mission of the Indian Health Service affects what research is done and how It is reviewed and managed and in turn affects the forms and process used to obtain informed consent. Consent forms must be Informative and understandable to American Indian and Alaska Native potential volunteers; the process used to obtain informed consent must minimize any institutional pressure to participate. The IHS Institutional Review Boards developed seven research Model Volunteer Consent Forms.

ABSTRACTDeveloping strategies to reduce inequities in health requires an understanding of how inequities occur, determining the salient factors in their production, and deciding which ones are most amenable to change. The recognition of several principles regarding the manifestations and genesis of inequities can help to decide on strategies. In making decisions, it is important to consider whether the aim is to reduce disparities in the occurrence of ill health or to reduce disparities in the severity of ill (...) class='Hi'>health. Evidence shows that the major impact on equity of health services, particularly regarding their potential to reduce severity, is attributable to the strength of primary care resources and services in communities and countries. Virtually every influence on the genesis of inequities is determined by the political context in which policy is made. The issue of health services is not different in this regard from other types of strategies.There is no longer any doubt about the pervasive influence of social factors on health. Almost two centuries of descriptive research provides convincing evidence of associations between social structures and relationships and health status in all countries and in all societies; if there is anything new from more recent research, it is that the association is not limited to differences between the lowest social strata and other social strata. Rather, the association is noted throughout the social spectrum. That is, there is a social gradient in health such that, for many if not most manifestations of ill health, the lower the social stratum, the worse the health.The challenge for the future is to understand why this is the case, to create a consensus that these inequalities are unnecessary and unacceptable, and to devise strategies that are both effective and possible. This paper will focus on the first of these aims, in a context that facilitates attention to the second and third aims. (shrink)

The law often calls on the concept of public interest for assistance. Privacy law makes use of this concept in several ways, including to justify consent waivers for secondary research on health information. Because the law sees information privacy as a means for individuals to control their personal information, consent can only be set aside in special circumstances. Ballantyne and Schaefer argue that only public interest, and only a broad conception of public interest, can do the special ‘normative (...) justificatory work’ to override consent requirements. Other, similar-sounding concepts, such as public benefit, public good and social value, also provide useful services. But none more so than public interest. In fact, they argue, public interest is the superior concept precisely because it can capture those concepts as well as a range of other interests. Our response focuses on this claim. We argue their strategy is not as promising as it might first seem. Ballantyne and Schaefer construe the important role that public interest plays in this context as their endpoint. They claim that unless the concept is open and content-rich, it will lose some of its importance. But by refusing to place limits around it, their inquiry leads us back to a catch-all concept that lacks clear focus or meaning. In reply, we argue that, for practically minded theorists, a narrow conception of public interest is more useful. Further, the narrowing of public interest in this context can be achieved by first analysing it in its legal, rather than ethical, sense. (shrink)

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

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls’ principles – using his ‘veil of ignorance’ and both the ‘difference’ and ‘just savings’ principles which it generates – provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those making (...) them did not know if one was patient, doctor, nurse or manager – in this generation or the next. We first offer a brief summary of Rawls’ approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls’ approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls’ thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil. (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We (...) hope the guidance offered in this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

Discourse and rhetoric of service-user involvement are pervasive in all mental health services that see themselves as promoting a Recovery ethos. Yet, for the service-user movement internationally, ‘Recovery’ was articulated as an alternative discourse of overcoming and resisting an institutionalized and oppressive psychiatric model of care. Power is all pervasive within mental health services yet often overlooked in official discourse on user-involvement. Critical research is required to expose the unacknowledged structural and power constraints on participants. (...) My research problematizes practices of user involvement in one mental health service area in Ireland. Part I of this article examines the background context of policies and practices of user-involvement from the service-user perspective and explains developments in relation to service-user involvement in the case of Ireland. Participants in my study articulate their motivation for engagement with mental health service reform in terms of the right to participate in social justice terms, of wanting to improve services and humanise care. Power dynamics emerge as one of the primary obstacles to equitable involvement. Part II of this article presents an explanatory framework of power, using a model developed in the field of development studies; Gaventa’s (2006) ‘power cube.’ The three dimensions of the cube represent the forms, spaces and levels of power. The explanatory potential of this model to highlight how hidden and invisible power operates in mental health services is illustrated by selected comments from the same participants. The power cube is a useful tool to illuminate the dynamics occurring in service-user involvement spaces. Showing how different forms of power operate in the spaces and levels of mental health involvement can develop service-users’ awareness of the hidden and invisible aspects of power. Through this awareness, they can strategize around their potential to influence decision-making in mental health services. (shrink)

La pandémie de COVID-19 a eu un effet mondial. L’impact disproportionné sur les peuples autochtones et les groupes racialisés a mis les défis éthiques au premier plan dans la recherche et la pratique clinique. Au Canada, l’Énoncé de politique des trois Conseils (EPTC2), et plus particulièrement le principe de justice, met l’accent sur les soins supplémentaires à apporter aux personnes « dont les circonstances les rendent vulnérables », notamment les communautés autochtones et racialisées. En l’absence de données fondées sur la (...) race pour mesurer et éclairer la recherche en santé et la pratique clinique, nous courons le risque de causer plus de tort et de contribuer à des injustices continues. Toutefois, en l’absence d’un cadre accepté pour la collecte, la tenue à jour et la communication des données fondées sur la race au Canada, il est nécessaire d’obtenir davantage de conseils sur la façon de bien faire les choses. Il est important de noter qu’un cadre pour la collecte de données fondées sur la race devrait s’appuyer sur les directives existantes des communautés autochtones et d’autres communautés structurellement marginalisées, sur l’EPTC2, sur les recommandations de l’Organisation mondiale de la santé et sur la participation des intervenants concernés. Dans le présent document, nous décrivons des exemples historiques d’études non éthiques sur les Autochtones et les groupes racialisés, nous discutons des défis et des avantages potentiels de la collecte de données fondées sur la race, et nous concluons par les objectifs d’un cadre pancanadien visant à informer la façon dont les données fondées sur la race sont recueillies, stockées et accessibles dans la recherche en santé. (shrink)

This essay is a reflection on how ethical violations continue to have an impact across generations within families of vulnerable populations that have experienced significant breaches in biomedical research. The focus is on the surviving family members of the United States Public Health Service Syphilis Study at Tuskegee (USPHS). Emphasis will be on responsible ethical practices in research and the use of an unique approach narrative storytelling to address the needs of family descendents who have been impacted (...) by the USPHS Syphilis Study. (shrink)

Ethical decision-making is often evaluated in the literature through deontological and teleological approaches, commonly referred to as ethical positions. Ethical decision-making requires an awareness of ethical sensitivity and ethical dilemmas. It involves understanding the emotional experiences of others and assisting them. In cases of alexithymia, where there is difficulty in understanding and expressing emotional experiences, empathy may be limited, and emotions may not be effectively used. In this research, the impact of the level of alexithymia on ethical positions in (...) students of the School of Health Services, along with demographic variables, was evaluated. In this descriptive research using a quantitative research approach, data was obtained using the "Ethical Position Scale-EPQ" and the "Toronto Alexithymia Scale-TAS." Analysis was performed using the reliability testing, t-test, One-Way ANOVA Test, LSD multiple comparison test, and Pearson Correlation and Regression Analysis test were used. In ethical decision-making, it has been found that women are more idealistic than men, while men tend to be more alexithymic and deficient in outward thinking. As students' levels of alexithymia increase, they are determined to adopt a more relativistic approach. It has been observed that relativism increases and idealism decreases significantly among individuals with high alexithymia scores. These findings indicate that the level of alexithymia has a significant impact on ethical positions. The fact that individuals with high levels of alexithymia adopt a subjective position that is less concerned with the consequences of an action on others and resembles egoism suggests that these individuals may have difficulty in empathizing due to emotional inadequacy. (shrink)

BackgroundThe concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require (...) prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.MethodsWe conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.ResultsOur study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.ConclusionThis study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings. (shrink)

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

Barriers to mental health interventions globally remain a health concern; however, these are more prominent in low- and middle-income countries. The barriers to accessibility include stigmatization, financial strain, acceptability, poor awareness, and sociocultural and religious influences. Exploring the barriers to the utilization of mental health services might contribute to mitigating them. Hence, this research aims to investigate these barriers to mental health service utilization in depth at the Kabutare District Hospital of the Southern Province (...) of Rwanda. The qualitative approach was adopted with a cross-sectional study design. The participants were patients with mental illnesses seeking mental health services at the hospital. Ten interviews were conducted in the local language, recorded, and transcribed verbatim and translated by the researchers. Thematic analysis was applied to analyze the data collected. The results revealed that the most common barriers are fear of stigmatization, lack of awareness of mental health services, sociocultural scarcity, scarcity of financial support, and lack of geographical accessibility, which limit the patients to utilize mental health services. Furthermore, it was revealed that rural gossip networks and social visibility within the communities compounded the stigma and social exclusion for patients with mental health conditions. Stigmatization should be reduced among the community members for increasing their empathy. Then, the awareness of mental disorders needs to be improved. Further research in Rwanda on the factors associated with low compliance to mental health services with greater focus on the community level is recommended. (shrink)

Using the infamous research studies in Tuskegee and Guatemala, the article examines the difference between victims and bystanders. The victims can include families, sexual partners, and children not just the participants. There are also the bystanders in the populations who are affected, even vaguely, decades after the initial studies took place. Differing reparations for victims and bystanders through lawsuits and historical acknowledgments has to be part of broader discussions of historical justice, and the weighing of the impact of racism (...) and imperial research endeavors. (shrink)

This paper analyses the role chaplaincy plays in providing religious and spiritual care in the UK’s National Health Service. The approach considers both the current practice of chaplains and also the wider changes in society around beliefs and public service provision. Amid a small but growing literature about spirituality, health and illness, I shall argue that the role of the chaplain is changing and that such change is creating pressures on the identity and performance of the chaplain as (...) a religiously authorised health worker. I shall question whether either orthodox belief or religious belonging have any significant bearing on the patients’ demand for chaplaincy services. Utilising an example of chaplaincy work I shall argue that patient need constitutes the strongest platform for both practice development and an articulated understanding of what chaplains bring to health care. Drawing on a case study the definition and interpretation of spiritual need will be discussed in relation to chaplaincy practice. In conclusion, I shall set out the case for effective research to establish with greater precision the detail of the chaplain’s practice within a state-funded health system. (shrink)

This current study aims to know the impact of a nurse completing his educational attainment and its impact on the health services provided to society in general. It is also important to know the effect of completing his educational attainment on the quality of work and better dealing with patients and medical staff. It is also important to know its impact on increasing the organization of his time at work. Knowing its impact on increasing his efficiency in his (...) work environment, A questionnaire was prepared via Google Drive and distributed to the population aged 25-55 years, men and women, in the city of Mecca. As for the questionnaire, it was distributed via the social networking program (WhatsApp) for the purpose of distancing for fear of the presence of the Corona virus. 400 questionnaires were distributed, and 395 responses were obtained via email to the principal researcher. The current study concluded that the impact of completing the educational attainment of male and female nurses and its impact on the health service provided was a very positive impact of 94.8%, and it also helped improve the health service provided to patients by a greater percentage of 90%. (shrink)

Many countries, including Australia, have established a national scheme that supports the recognition of a single ethical review for multi-centre research conducted in publicly funded health services. However, local site-specific governance review processes remain decentralised and highly variable. This short report describes the ethics and governance processes required for a negligible risk national survey of physiotherapy-led airway clearance services in Australia. We detail inconsistencies in research governance document preparation and submission (platforms, processes, forms and signatories) (...) and report the time cost and likely impact of these inconsistencies on health services research outcomes. Processes and strategies that facilitated success in this project are identified and summarised as helpful hints to other researchers looking to embark on negligible risk research in public health facilities. (shrink)

Informed consent is a vital part of ethical research. In emergency health care research environments such as ambulance services and emergency departments, it is sometimes necessary to conduct trial interventions or observations without patient consent. At times where treatment is time critical, it may be impossible or inappropriate to seek consent from next of kin. Emergency medicine is one of the few areas where the process of informed consent can be waived to allow research to (...) proceed without patient consent. This article will explore the ethics of informed consent in the prehospital emergency research context. This will include an overview of current Australian guidelines for ethical research, and recent changes in law internationally which have affected the conduct of international emergency health research. An overview of the ethical reasoning behind the waiver of informed consent in emergency research is presented, also addressing issues relating to emergency health research such as proxy consent, unconscious patients, and patient decision making capacity. The unusual circumstances encountered in the prehospital ambulance environment will also be discussed, including the dependent and coercive relationship between patients and ambulance professionals, and a lack of alternatives for care and transport for patients who refuse consent. The conflict arising from differences in medical culture and values between patients and health care professionals will also briefly be discussed. It will be argued that, while emergency care research should not require informed consent due to the restrictions of time and dependent nature of the relationship between patient and health professional, emergency health researchers still have a responsibility to consider the patients’ perspective when considering the ethical issues of an emergency research project, particularly in the prehospital environment. (shrink)

Background The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis. Methods Semi-structured individual interviews with two groups: researchers employed in (...) the National Health Service (NHS) or a university in England (n = 14), and mental health professionals employed in NHS mental health services (n = 14). This article compares results in the two groups (total n = 28). Results This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing—which includes acquisition, communication, and use of—neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered—that is, communicated and used—in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals’ perception of ethical principles and moral obligations. Conclusions This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health. Trial registration The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255. (shrink)

BackgroundIntegrating a sex and gender lens is increasingly recognized as important in health research studies. Past failures to adequately consider sex in drug development, for example, led to medications that were metabolized differently, proved harmful, or ineffective, for females. Including both males and females in study populations is important but not sufficient; health, access to healthcare, and treatment provided are also influenced by gender, the socially mediated roles, responsibilities, and behaviors of boys, girls, women and men. Despite (...) understanding the relevance of sex and gender to health research, integrating this lens into study designs can still be challenging. Identified here, are nine opportunities to address sex and gender and thereby strengthen research proposals.MethodsOntario investigators were invited to submit a draft of their health research proposal to the Sex and Gender Research Support Service at Women’s College Hospital in Toronto, Ontario. The service works to build capacity on the integration of sex, gender, and other identity factors, in health research. Using the SAGER Guidelines and the METRICS for the Study of Sex and Gender in Human Participants as guides, proposals were reviewed to enhance their sex and gender considerations. Content analysis of the feedback provided these investigators was subsequently completed.ResultsNearly 100 hundred study proposals were reviewed and investigators provided with suggestions on how to enhance their proposal. Analyzing the feedback provided across the reviewed studies revealed commonly overlooked opportunities to elevate consideration of sex and gender. These were organized into nine suggestions to mirror the sections of a research proposal.ConclusionHealth researchers are often challenged on how to integrate a sex and gender lens into their work. Reviews completed across a range of health research studies show there are several commonly overlooked opportunities to do better in this regard. Nine ways to improve the integration of a sex and gender lens in health research proposals have been identified. (shrink)

Background Studying global health problems requires international multidisciplinary teams. Such multidisciplinarity and multiculturalism create challenges in adhering to a set of ethical principles across different country contexts. Our group on health system responses to violence against women (VAW) included two universities in a European high-income country (HIC) and four universities in low-and middle-income countries (LMICs). This study aimed to investigate professional and policy perspectives on the types, causes of, and solutions to ethical challenges specific to the ethics approval (...) stage of the global research projects on health system responses to VAW. Methods We used the Network of Ethical Relationships model, framework method, and READ approach to analyse qualitative semi-structured interviews (n = 18) and policy documents (n = 27). In March-July 2021, we recruited a purposive sample of researchers and members of Research Ethics Committees (RECs) from the five partner countries. Interviewees signposted policies and guidelines on research ethics, including VAW. Results We developed three themes with eight subthemes summarising ethical challenges across three contextual factors. The global nature of the group contributed towards power and resource imbalance between HIC and LMICs and differing RECs’ rules. Location of the primary studies within health services highlighted differing rules between university RECs and health authorities. There were diverse conceptualisations of VAW and vulnerability of research participants between countries and limited methodological and topic expertise in some LMIC RECs. These factors threatened the timely delivery of studies and had a negative impact on researchers and their relationships with RECs and HIC funders. Most researchers felt frustrated and demotivated by the bureaucratised, uncoordinated, and lengthy approval process. Participants suggested redistributing power and resources between HICs and LMICs, involving LMIC representatives in developing funding agendas, better coordination between RECs and health authorities and capacity strengthening on ethics in VAW research. Conclusions The process of ethics approval for global research on health system responses to VAW should be more coordinated across partners, with equal power distribution between HICs and LMICs, researchers and RECs. While some of these objectives can be achieved through education for RECs and researchers, the power imbalance and differing rules should be addressed at the institutional, national, and international levels. Three of the authors were also research participants, which had potential to introduce bias into the findings. However, rigorous reflexivity practices mitigated against this. This insider perspective was also a strength, as it allowed us to access and contribute to more nuanced understandings to enhance the credibility of the findings. It also helped to mitigate against unequal power dynamics. (shrink)