The World Professional Association for Transgender Health guidelines Standards of Care 8 draw on ethical arguments based on individual autonomy, to argue that healthcare and other professionals should be advocates for trans people. Such guidelines presume the presence of medical services for trans people and a degree of consensus on medical ethics. Very little is known, however, about the ethical challenges associated with both providing and accessing trans healthcare, including gender affirmation, in the Global South. In light of the challenges (...) associated with medical and legal gender affirmation in Indonesia, we conducted a qualitative study to understand the views of trans people, healthcare providers, and legal practitioners. In this qualitative study, we drew on a participatory methodology to conduct 46 semi-structured interviews between October and December 2023, with trans people (10 trans feminine people and 10 trans masculine people, each interviewed twice) and key informants (three healthcare providers and three lawyers and paralegals). Trans people were a central part of the research team from inception through to analysis and writing. Participants were recruited via community-led sampling. Data analysis of interview data took place through an immersion/crystallisation technique and preliminary inductive coding which highlighted key quotes. We focused on an inductive analysis using participant narratives to identify key concepts in the ethics of gender affirmation in Indonesia. We characterize the ethics of supportive healthcare workers, community members, and family members, as that akin to “accomplices,” a concept of ethics used in theories of racial justice which evaluate a willingness to support people to navigate laws and regulations which perpetuate injustices and violence. Overall, both trans people and key informants shared an understanding that the legal status of gender-affirming medical care was particularly ambiguous in Indonesia due to a lack of clarity in both laws and regulations. For trans participants, ethical arguments for the validity of legal and medical gender affirmation was premised on evidence that their gender identity and expression was already recognized within society, even if limited to immediate friends and family. Given that all participants expressed a desire for gender affirmation, but such services were widely unavailable, accomplices played a crucial role in supporting trans people to access healthcare. An empirical study based on an “ethics from below” helps to show that arguments grounded in autonomy, or based on biomedical evidence, are unlikely to alter unjust laws or facilitate a change to pathologizing guidelines governing understanding of trans people’s healthcare and legal needs in Indonesia. We provide an analysis that is sensitive to the ethics of facilitating gender affirmation in a context where that process is inherently social, and often articulated in relation to a prevailing religious morality. (shrink)

This article explores the accounts of Canadian-trained health professionals working in humanitarian and development organizations who considered not treating a patient or group of patients because of resource limitations. In the narratives, not treating the patient(s) was sometimes understood as the right thing to do, and sometimes as wrong. In analyzing participants’ narratives we draw attention to how medications and equipment are represented. In one type of narrative, medications and equipment are represented primarily as scarce resources; in another, they are (...) represented as patient care. In the contexts respondents were working, medications and equipment were often both patient care interventions and scarce resources. The analytic point is that health professionals tend to emphasize one conceptualization over the other in coming to assert that not treating is right, or wrong. Rendering tacit ethical frameworks more explicit makes them available for reflection and debate. (shrink)

This book series deals with religion and its interface with the state and society in Southeast Asia. It examines the multidimensional facets of politics, public policies and social change in relation to contemporary forms of religions, religious communities, thinking, praxis and ethos. All articles in this Book Series were a direct result of a policy-relevant research collaboration conducted by investigators from the participating countries from 2013–2016. The issues under examination in this Series include: state management of diversity, multicultural policies, religious (...) social activism and state-society relations. All of the analyses in this Book Series are fixed within the context of a rapidly changing society in Southeast Asia. (shrink)

Current medical genetics research is dominated by a single theory that supports the Human Genome Project rationale. This thesis investigates this and several alternative hypotheses and the ethical context related to their development. Firstly, the hypotheses are discussed in detail followed by a subsection in which research evidence based on each hypothesis is cited. Secondly, these medical genetics hypotheses are situated within the contemporary medical paradigm. To conclude, the thesis examines in depth the ethical and practical implications of medical genetics (...) research. A framework of analysis of scientific responsibility is used to explore these implications. Scientific responsibility, as presented in this thesis, is a process consisting of three steps: scientific discourse; the development of the nature of scientific responsibility; and, effective criticism. Once scientific responsibility is defined, the term is applied specifically to the field of medical genetics research. (shrink)

Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed countries, autonomy-based bioethics (...) fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy. (shrink)

Significant inequalities in health between and within countries have been measured over the past decades. Although these inequalities, as well as attempts to improve sub-standard health, raise profound issues of social justice and the right to health, those working in the field of bioethics have historically tended to devote greater attention to ethical issues raised by new, cutting-edge biotechnologies such as life-support cessation, genomics, stem cell research or face transplantation. This suggests that bioethics research and scholarship may revolve around issues (...) that, while fascinating and important, currently affect only a small minority of the world's population. In this article, we examine the accusation that bioethics is largely dominated by Anglophone and industrialized world interests, and explore what kinds of positive contributions a 'bioethics from below' (as Paul Farmer calls it) can make to the field of bioethics in general. As our guide in this exploration, we make use of some experiences and lessons learned in our collaborative bioethics project in the Democratic Republic of Congo, Building Bioethics Capacity and Justice in Health. We conclude that while there is some evidence of increased attention to bioethical challenges in developing countries, this development should be further cultivated, because it could help expand the horizons of the field and enhance its social relevance wherever it is practiced. (shrink)

CAPPE LPO Box 8260 ANU Canberra ACT 2601 Australia Tel: +61 (0)2 6125 4355, Fax: +61 (0)2 6125 6579; Email: michael.selgelid{at}anu.edu.au ' + u + '@' + d + ' '//--> Abstract This article reviews ethically relevant history of tuberculosis and recent developments regarding extensively drug resistant tuberculosis (XDR-TB). It argues that tuberculosis is one of the most important neglected topics in bioethics. With an emphasis on XDR-TB, it examines a range of the more challenging ethical issues associated with tuberculosis: (...) individual obligations to avoid infecting others, coercive social distancing measures, third-party notification, health workers' duty to treat contagious patients, and international justice. In each of these cases, key philosophical questions are highlighted and the need for empirical research/information is demonstrated. CiteULike Connotea Del.icio.us What's this? (shrink)

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological (...) critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings. (shrink)

The debate over how to best guide HIV-infected mothers in resource-poor settings on infant feeding is more than two decades old. Globally, breastfeeding is responsible for approximately 300,000 HIV infections per year, while at the same time, UNICEF estimates that not breastfeeding (formula feeding with contaminated water) is responsible for 1.5 million child deaths per year. The largest burden of these infections and deaths occur in Sub-Saharan Africa. Using this region as an example of the burden faced more generally in (...) other resource-poor settings, we contrast the evolution of the clinical standard of care for infant feeding with HIV-infected mothers in high-income countries to the current international clinical guidelines for HIV-infected mothers and infant feeding in resource-poor settings. While the international guidelines of exclusive breastfeeding for a 6-month period seem to offer the least-worst strategy for reducing mother-to-child transmission of HIV during infancy while conferring some immunity through breastfeeding post-6 months, we argue that the impact of the policy on mothers and healthcare workers on the ground is not well understood. The harm reduction approach on the level of health policy translates into a complicated, painful moral dilemma for HIV-positive mothers and those offering them guidance on infant feeding. We argue that the underlying socio-economic disparities that continue to fuel the need for a harm reduction policy on infant feeding and the harm to women and children justify: (1) that higher priority be given to solving the infant feeding dilemma with improved data on safe feeding alternatives, and (2) support of innovative, community-driven solutions that address the particular economic and cultural challenges that continue to result in HIV-transmission to children within these communities. (shrink)

The indiscriminate use of cardiopulmonary resuscitation (CPR), untempered by evidence about outcomes, has been called “irrational exuberance” (Rosoff and Schneiderman 2017). There is much to be sai...

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)

Humanitarian emergencies and natural disasters can overwhelm the capacity of local and national agencies to respond to the needs of affected populations. In such cases, international relief organizations are frequently involved in the provision of emergency assistance. Health care professionals play a key role in these interventions. This practice environment is significantly different from the context of health care delivery in the home countries of expatriate health care professionals. Clinicians who travel from a developed nation to a resource-poor setting where (...) a humanitarian crisis has occurred experience a shift of professional, social, cultural and regulatory environments. In this dissertation I examine the ethics of health care practice in humanitarian work. I evaluate the literature of global bioethics, global health ethics and the ethics of humanitarian assistance, and consider the contributions of various ethics frameworks and normative approaches. I also develop a set of questions to guide health care professionals as they address ethically complex issues arising in clinical practice during humanitarian crises. In the empirical component of this research program I use Interpretive Description methodology to examine the moral experience of health care professionals in humanitarian relief work, and clinician experiences of resources and constraints for addressing ethical issues in humanitarian settings. Building upon the inductively derived findings, I argue for strategies and approaches that humanitarian organizations, project teams, and health care professionals can adopt to respond to the ethics of this field of practice. I also provide a critical review of Interpretive Description methodology. The research presented in this dissertation makes an important contribution to the ethical analysis of health care practice in humanitarian work. (shrink)

ABSTRACT This paper reviews the dynamics behind, and ethical issues associated with, the phenomenon of drug resistance. Drug resistance is an important ethical issue partly because of the severe consequences likely to result from the increase in drug resistant pathogens if more is not done to control them. Drug resistance is also an ethical issue because, rather than being a mere quirk of nature, the problem is largely a product of drug distribution. Drug resistance results from the over‐consumption of antibiotics (...) by the wealthy; and it, ironically, results from the under‐consumption of antibiotics, usually by the poor or otherwise marginalized. In both kinds of cases the phenomenon of drug resistance illustrates why health (care) – at least in the context of infectious disease – should be treated as a (global) public good. The point is that drug resistance involves ‘externalities’ affecting third parties. When one patient develops a resistant strain of disease because of her over‐ or under‐consumption of medication, this more dangerous malady poses increased risk to others. The propriety of free‐market distribution of goods subject to externalities is famously dubious – given that the ‘efficiency’ rationale behind markets assumes an absence of externalities. Market failure in the context of drug resistance is partly revealed by the fact that no new classes of antibiotics have been developed since 1970. I conclude by arguing that the case of drug resistance reveals additional reasons – to those traditionally appealed to by bioethicists – for treating health care as something special when making policy decisions about its distribution. (shrink)

Tuberculosis is a major global public health challenge, and a majority of countries have adopted a version of the global strategy to fight Tuberculosis, Directly Observed Treatment, Short Course (DOTS). Drawing on results from research in Ethiopia and Norway, the aim of this paper is to highlight and discuss ethical aspects of the practice of Directly Observed Treatment (DOT) in a cross-cultural perspective.

Contemporary bioethics education has been developed predominately within Euro-American contexts, and now, other global regions are increasingly joining the field, leading to a richer global understanding. Nevertheless, many standard bioethics curriculum materials retain a narrow geographic focus. The purpose of this article is to use local cases from the Asia-Pacific region as examples for exploring questions such as ‘what makes a case or example truly local, and why?’, ‘what topics have we found to be best explained through local cases or (...) examples?’, and ‘how does one identify a relevant local case?’ Furthermore, we consider the global application of local cases to help extend the possible scope of the discussion, opening new avenues for the development of practical bioethics educational materials. We begin with a background description and discussion of why local cases enhance bioethics education, move to an overview of what is currently available and what is not for the region, and then outline a discussion of what it means to be local using example cases drawn from Hong Kong, Australia, Pakistan, and Malaysia. We are not creating a casebook but rather constructing by example a toolbox for designing active and dynamic learning cases using regional diversity as contextualised cases with generalised principles. (shrink)

The goal of this paper is to articulate and advocate for an enhanced role for philosophers of science in the domain of science policy as well as within the science curriculum. I argue that philosophy of science as a field can learn from the successes as well as the mistakes of bioethics and begin to develop a new model that includes robust contributions to the science classroom, research collaborations with scientists, and a role for public philosophy through involvement in science (...) policy development. Through an analysis of two case studies, I illustrate how philosophers of science can make effective and productive contributions to science education as well as to interdisciplinary scientific research, and argue for the essential role of philosophers of science in the realm of science policy. (shrink)

I argue that naturalizing normativity—articulating norms that are appropriate given what we know about ourselves and the world—can be framed in terms of sustainability, calling for norms that underwrite practices of inquiry that make it more rather than less likely that others, especially those who are variously marginalized and subordinated, will be able to acquire knowledge in the future. The case for a sustainable epistemology, with a commitment to attending especially to those in positions of vulnerability, can be made, I (...) argue, as much on epistemic grounds as on grounds of social justice. (shrink)

ABSTRACTDecisions that influence health and access to health care are necessarily a matter of ethics. This paper attempts to examine current budgetary allocations and policy shifts in India from the perspective of global ethical values. It also describes how global economic processes may increase health inequity nationally and argues that they should, therefore, be subject to global health ethics. Public health in India is in a state of crisis from a disinvestment in public health care services and persistent neglect, simultaneous (...) to the global push to enhance privatization. National health policies have remained oblivious to the unacceptably high inequity in access to health care on the one hand, and the cautionary analysis of the experience with currently chosen solutions through public-private- partnership and insurance models, which further marginalize the poorest. Global institutions such as the World Trade Organisation also influence national policies to benefit global business interests but often with detrimental effect upon equitable access to health and health care. The paper argues that the application of ethics must become more visible in the determination of national policies that are led by the dominant global paradigms of economic development to ensure that equitable access to health is prioritized. (shrink)