Challenges to the right to health in sub-Saharan Africa: reflections on inequities in access to dialysis for patients with end-stage kidney failure.

Realization of the individual's right to health in settings such as sub-Saharan Africa, where health care adequate resources are lacking, is challenging. This paper demonstrates this challenge by illustrating the example of dialysis, which is an expensive but life-saving treatment for people with kidney failure. Dialysis resources, if available in sub-Saharan Africa, are generally limited but in high demand, and clinicians at the bedside are faced with deciding who lives and who dies. When resource limitations exist, transparent and objective priority setting regarding access to such expensive care is required to improve equity across all health needs in a population. This process however, which weighs individual and population health needs, denies some the right to health by limiting access to health care.This paper unpacks what it means to recognize the right to health in sub-Saharan Africa, acknowledging the current resource availability and scarcity, and the larger socio-economic context. We argue, the first order of the right to health, which should always be realized, includes protection of health, i.e. prevention of disease through public health and health-in-all policy approaches. The second order right to health care would include provision of universal health coverage to all, such that risk factors and diseases can be effectively and equitably detected and treated early, to prevent disease progression or development of complications, and ultimately reduce the demand for expensive care. The third order right to health care would include equitable access to expensive care. In this paper, we argue that recognition of the inequities in realization of the right to health between individuals with "expensive" needs versus those with more affordable needs, countries must determine if, how, and when they will begin to provide such expensive care, so as to minimize these inequities as rapidly as possible. Such a process requires good governance, multi-stakeholder engagement, transparency, communication and a commitment to progress. We conclude the paper by emphasizing that striving towards the progressive realization of the right to health for all people living in SSA is key to achieving equity in access to quality health care and equitable opportunities for each individual to maximize their own state of health.

Moral habitus: An approach to understanding embedded disrespectful practices.

The moral habitus shows how morally oriented clinical interactions through everyday social evaluations generate and sustain disrespectful attitudes and behaviours that disregard patients and family members. These attitudes and behaviours often result from the habitual nature of interaction styles and embodied bodily dispositions within particular hospital settings. By utilising the data of a qualitative study in two hospitals in the south Indian city of Chennai, I illustrate the role of moral habitus in understanding these disrespectful attitudes and behaviours. I show how the stereotyping and embodied bodily dispositions by healthcare professionals raise moral and ethical questions, such as those related to ethical value of respect for persons. I conclude that studying the moral habitus of hospital settings is significant for proposing ways to respect patients and family members of patients in practice and uphold ethical values, and to have meaningful healthcare interactions. Furthermore, the concept of moral habitus offers theoretical grounds for understanding these attitudes and behaviours in hospital settings, while engaging in ethics and patient-centred care debates, to bridge the gap between theory and practice of respect.

Revisiting respect for persons: conceptual analysis and implications for clinical practice.

In everyday conversations, professional codes, policy debates, and academic literature, the concept of respect is referred to frequently. Bioethical arguments in recent decades equate the idea of respect for persons with individuals who are capable of autonomous decision-making, with the focus being explicitly on 'autonomy,' 'capacity,' or 'capability.' In much of bioethics literature, respect for persons is replaced by respect for autonomy. Though the unconditional respect for persons and their autonomy (irrespective of actual decision-making capacity) is established in Kantian bioethics, current argument and debates often revolve around a thin concept of autonomy, focusing on capacity and capability: persons are owed respect because they are 'rational beings' or with a focus on 'agency' and 'decision-making abilities.' However, these aspects alone are insufficient while engaging the concept of respect for persons, particularly in healthcare settings. This paper sets out to explore if the concept of respect for persons-as opposed to a thin concept of autonomy-could help us engage better in healthcare practices. We shall probe the practical value of the experiential aspect of respect-understood as the recognition of persons as respect-worthy through certain dispositions and deliberative acts-by reflecting on instances in clinical practice that tend to be dismissed as negligible or even unavoidable in a stressful environment such as a busy hospital. We shall argue that these instances are far from trivial but carry moral significance and express an unacceptable-disrespectful-attitude that can compromise the moral habitus in hospital settings. In our conclusion, we call for practicing recognition respect in the health professional-patient encounter by focussing on manners, attitudes, and behaviors. Furthermore, we call for continuous medical ethics education programs to address the moral significance of disrespectful behaviors and their manifestations in particular socio-cultural contexts.

The Social Construction of Incompetency: Moving Beyond Embedded Paternalism Toward the Practice of Respect.

This article illustrates the less-acknowledged social construction of the concept of 'incompetency' and draws attention to the moral concerns it raises in health care encounters in the south Indian city of Chennai. Based on data drawn from qualitative research, this study suggests that surgeons subjectively construct the idea of incompetency through their understanding of the perceived circumstantial characteristics of the patients and family members they serve. The findings indicate that surgeons often underestimate patients and family members' capacity based on constructed assessments, which leads to paternalistic practice. In this article, I illustrate how these assessments influence the surgeons' practices and provide the moral and practical justifications for their actions. The constructed knowledge becomes a source for drawing normative justification for surgeons' actions and, in conjunction with socially enforced power relationships, results in patients and family members to be on the receiving end of disrespectful attitudes. Based on the data analysis and by drawing on philosophical analysis, I emphasize the need to focus on 'respect for persons,' to rethink the framework of 'capacity,' and to practice respect in hospital settings.

Beyond Public Health and Private Choice: Breastfeeding, Embodiment and Public Health Ethics.

The key objective of this paper is to emphasize the importance of acknowledging breastfeeding as an embodied social practice within interventions related to breastfeeding and lactation and illustrate how this recognition holds implications for public health ethics debates. Recent scholarship has shown that breastfeeding and lactation support interventions undermine women's autonomy. However, substantial discourse is required to determine how to align with public health goals while also recognizing the embodied experiences of breastfeeding and lactating individuals. Presently, interventions in this realm predominantly revolve around health-related messaging and the promotion of individual behaviors, often neglecting the systemic and structural factors that influence choices and practices. I closely examine breastfeeding interventions in India, in particular Mothers' Absolute Affection health promotion program, along with breastfeeding narratives. I argue that for such interventions to evolve, they must acknowledge the intrinsic embodied social nature of breastfeeding during their design and implementation. Furthermore, it is important to emphasize that achieving equity and justice objectives necessitates moving beyond the confines of both conventional public health frameworks and frameworks solely centered on private choices. Instead, a more encompassing approach that embraces the concept of embodiment should be adopted.

Ethical Issues in Breastfeeding and Lactation Interventions: A Scoping Review.

BACKGROUND: Infant feeding interventions that promote and support breastfeeding are considered important contributions to global public health. As these interventions often target private settings (e.g., individuals' homes) and involve vulnerable populations (e.g., pregnant women, infants, and underprivileged families), a keen awareness of ethical issues is crucial. RESEARCH AIM: The purpose of this scoping review was to capture the key elements of the current ethical discourse regarding breastfeeding and lactation interventions. METHOD: A scoping review was conducted using Arksey and O'Malley's (2005) methodology to identify the ethical issues of breastfeeding and lactation interventions as they are reflected in the scholarly literature published between January 1990 and October 2022. Abstracts (N = 3715) from PubMed, ScienceDirect, JSTOR and the Cochrane Database of Systematic Reviews were screened. The final sample consisted of 26 publications. RESULTS: The recurring ethical issues identified in these studies were: the normative assumptions of motherhood; maternal autonomy and informed choice; information disclosure, balancing risks and benefits, and counseling practices; stigma and social context; ethics of health communication in breastfeeding campaigns; and the ethical acceptability of financial incentives in breastfeeding interventions. CONCLUSION: This review illustrated that, while a wide range of ethical arguments were examined, the emphasis has been primarily on accounting for mothers' experiences and lactating persons' choices, as well as achieving public health objectives relating to infant nutrition in breastfeeding interventions. To effectively and ethically implement breastfeeding and lactation interventions, we must consider the social, economic, and cultural contexts in which they occur. One key learning identified was that women's experiences were missing in these interventions and, in response, we suggest moving beyond the dichotomous approach of individual health versus population health.

Philosophy and the clinic: Stigma, respect and shame.

Since its foundation in 2010, the annual philosophy thematic edition of this journal has been a forum for authors from a wide range of disciplines and backgrounds, enabling contributors to raise questions of an urgent and fundamental nature regarding the most pressing problems facing the delivery and organization of healthcare. Authors have successfully exposed and challenged underlying assumptions that framed professional and policy discourse in diverse areas, generating productive and insightful dialogue regarding the relationship between evidence, value, clinical research and practice. These lively debates continue in this thematic edition, which includes a special section on stigma, shame and respect in healthcare. Authors address the problems with identifying and overcoming stigma in the clinic, interactional, structural and phenomenological accounts of stigma and the 'stigma-shame nexus'. Papers examine the lived experience of discreditation, discrimination and degradation in a range of contexts, from the labour room to mental healthcare and the treatment of 'deviancy' and 'looked-after children'. Authors raise challenging questions about the development of our uses of language in the context of care, and the relationship between stigma, disrespect and important analyses of power asymmetry and epistemic injustice. The relationship between respect, autonomy and personhood is explored with reference to contributions from an important conference series, which includes analyses of shame in the context of medically unexplained illness, humour, humiliation and obstetric violence.

Adopting an ethical approach to migration health policy, practice and research.

Migration health is affected by decision making at levels ranging from global to local, both within and beyond the health sector. These decisions impact seeking, entitlements, service delivery, policy making and knowledge production on migration health. It is key that ethical challenges faced by decision makers are recognised and addressed in research and data, clinical practice and policy making on migration health. An ethical approach can provide methods to identify ethical issues, frameworks for systematising information and suggesting ethically acceptable solutions, and guidance on procedural concerns and legitimate decision making processes. By unpacking dilemmas, conflicts of interests and values at stake, an ethical approach is relevant for all who make decisions about migration health policy and practice. Adopting an ethical approach to migration health benefits governments, organisations, policy makers, health workers, data managers, researchers and migrants themselves. First, it highlights the inherent normative questions and trade-offs at stake in migration health. Second, it assists decision makers in deciding what is the ethically justifiable thing to do through an 'all things considered' approach. Third, ethical frameworks and technical guidance set normative and practical standards for decision makers facing ethical questions - from 'bedside rationing' to collection of big data or in policy making - that can ensure that migrants' interests are considered. Fourth, there is a need for greater transparency and accountability in decision making, as well as meaningful participation of migrant groups. An ethical approach connects to public health, economic and human rights arguments and highlights the urgent need to mainstream concerns for migrants in global and national health responses.

What empirical research has been undertaken on the ethics of clinical research in India? A systematic scoping review and narrative synthesis.

INTRODUCTION: The post-2005 rise in clinical trials and clinical research conducted in India was accompanied by frequent reports of unethical practices, leading to a series of regulatory changes. We conducted a systematic scoping review to obtain an overview of empirical research pertaining to the ethics of clinical trials/research in India. METHODS: Our search strategy combined terms related to ethics/bioethics, informed consent, clinical trials/research and India, across nine databases, up to November 2019. Peer-reviewed research exploring ethical aspects of clinical trials/research in India with any stakeholder groups was included. We developed an evidence map, undertook a narrative synthesis and identified research gaps. A consultation exercise with stakeholders in India helped contextualise the review and identify additional research priorities. RESULTS: Titles/Abstracts of 9699 articles were screened, full text of 282 obtained and 80 were included. Research on the ethics of clinical trials/research covered a wide range of topics, often conducted with little to no funding. Studies predominantly examined what lay (patients/public) and professional participants (eg, healthcare staff/students/faculty) know about topics such as research ethics or understand from the information given to obtain their consent for research participation. Easily accessible groups, namely ethics committee members and healthcare students were frequently researched. Research gaps included developing a better understanding of the recruitment-informed consent process, including the doctor-patient interaction, in multiple contexts and exploring issues of equity and justice in clinical trials/research. CONCLUSION: The review demonstrates that while a wide range of topics have been studied in India, the focus is largely on assessing knowledge levels across different population groups. This is a useful starting point, but fundamental questions remain unanswered about informed consent processes and broader issues of inequity that pervade the clinical trials/research landscape. A priority-setting exercise and appropriate funding mechanisms to support researchers in India would help improve the clinical trials/research ecosystem.

The uninformed spouse: Balancing confidentiality and other professional obligations.

I use the case study presented by Bawaskar (1), which I refer to as the "The Case of the Uninformed Spouse", to illustrate an ethical conflict between medical confidentiality and the duty to protect and inform an involved third party, who in this case is the patient's spouse. The central question raised by Bawaskar based on this case is, 'Is it the physician's professional obligation to counsel the patient against marriage?' In this commentary, I will attempt to answer this question while also engaging with the ethical conflict in this case and what issues may arise if the physician had indeed considered revealing information to the patient's partner against the wishes of the patient. I engage on the concept of "harm" to discuss the moral scope of the duty to warn an involved third party and when it is justified to breach confidentiality of the patient. Based on the ethical analysis, I conclude that, in this case and in analogous cases, healthcare professionals should not breach the confidentiality of patients and should uphold it as the basis for trust within the doctor-patient relationship. Further, I state that it is part of their professional obligation to advise and provide psychosocial care through counselling to ensure comprehensive care.

The Rhetoric of the 'Passive Patient' in Indian Medical Negligence Cases.

In this paper, I examine the rhetoric employed by court judgements, with a particular emphasis on the narrative construct of the 'passive patient'. This construction advances and reinforces paternalistic values, which have scant regard for the patients' preferences, values, or choices within the legal context. Further, I critique the rhetoric employed and argue that the use of this rhetoric is the basis for a precedent that limits the understanding and respect of patients. Through this paper, I present the contemporary use of the 'passive patient' construct in the context of the Indian legal system and describe how such constructions have become a source of normative justification for legal reasoning that jeopardizes the patient's agency. I argue for the primacy of 'respect for persons' within Indian law and the need to treat each patient as a person who has agency, preferences, and values during clinical interactions. I conclude by suggesting that laws that adopt narratives that acknowledging the significance of patient engagement and the relevance of effective communication during clinical encounters would help cultivate a culture of patient-centred care, by moving beyond the rhetoric of 'passive patient' and the 'health/choice' dichotomy.

The moral significance of capturing micro-inequities in hospital settings.

This paper illustrates and reflects on subtle micro-level events and practices that sustain and reproduce unequal relationships in healthcare encounters, and draws attention to their moral significance in two hospitals in the south Indian city of Chennai. Based on observational data and in-depth interviews with 16 surgeons, 11 nurses, and 36 patients and their family members between February 2016 and July 2017, it reveals how both victims and perpetrators normalize instances of micro-inequities, often failing to recognize or acknowledge them. The findings illustrate how the prevalence of micro-inequities varies between different medical institutions, and suggest that while subtle in nature, their effect raises concerns regarding dignity and respect for patients and family members. Drawing on existing philosophical analyses of micro-inequities, the study concludes that their production in hospital settings creates an institutional ethos that disdains and marginalizes patients and their family members. Further, it negatively influences the patient/family-doctor relationship and functions as a barrier to reflective patient-centered care.

Patient autonomy within real or valid consent: Samira Kohli's case.

In bioethics literature, the primary justification for the requirement of informed consent has been the protection of autonomous choices. To allow patients to be autonomous decision-makers, physicians are supposed to disclose and share information related to all treatment, procedures and risks. Advocates of the autonomy-based informed consent model argue that in informed consent cases, the disclosure of information should be according to the reasonable person standard or reasonable patient standard, rather than the average competent physician standard. In the Indian medicolegal context, the concept of consent has evolved through the discussion of informed consent and by referring to the concepts of informed consent in other countries, such as the USA, the UK and Canada. In cases of medical negligence in India, the concept of "real or valid consent" has been adopted from British case law rather than the "informed consent" of the USA. This paper examines the doctrinal rules of the concept of real or valid consent through an analysis of Samira Kohli's case - a landmark court case and a major precedent case in India that referred to "real or valid consent". In analysing this case, the paper will examine the judiciary's decision on the nature of and standard for the disclosure of information. Thus, the paper will reflect on the underlying ethical and legal principles of the doctrine of real or valid consent in the Indian context. This paper uses a hermeneutic approach to the landmark case to provide a qualitative interpretation of the Indian medical judiciary's concept of consent and the autonomy of the patient.