How international research might contribute to justice in global health has not been substantively addressed by bioethics. This article describes how the provision of ancillary care can link international clinical research to the reduction of global health disparities. It identifies the ancillary care obligations supported by a theory of global justice, showing that Jennifer Ruger’s health capability paradigm requires the delivery of ancillary care to trial participants for a limited subset of conditions that cause severe morbidity and mortality. Empirical research (...) on the Shoklo Malaria Research Unit’s (SMRU) vivax malaria treatment trial was then undertaken to demonstrate whether and how these obligations might be upheld in a resource-poor setting. Our findings show that fulfilment of the ancillary care obligations is feasible where there is commitment from chief investigators and funders and is strongly facilitated by SMRU’s dual role as a research unit and medical non-governmental organization. (shrink)

In response to calls to expand the scope of research ethics to address justice in global health, recent scholarship has sought to clarify how external research actors from high-income countries might discharge their obligation to reduce health disparities between and within countries. An ethical framework—‘research for health justice’—was derived from a theory of justice (the health capability paradigm) and specifies how international clinical research might contribute to improved health and research capacity in host communities. This paper examines whether and how (...) external funders, sponsors, and researchers can fulfill their obligations under the framework. (shrink)

Pratt, Zion, and Loff (2012) correctly point out that most international clinical research (ICR) is not intended to address the vast inequities in access to health care between developed and develo...

In 2008, over 400 children living on the Yearning for Zion Ranch, a rural Texas polygamist community of the Fundamentalist Church of Jesus Christ of the Latter Day Saints (FLDS), were forcibly removed from their mothers’ care by State troopers responding to allegations of child abuse. This essay examines the role of neoliberal ideologies and, more specifically, what some queer theorists have identified as ‘metronormativity’ in solidifying a widespread caricature of FLDS mothers as ‘bad’ mothers. The intersections of these (...) ideologies with neocolonialist discourses, I argue, positions the FLDS mother as a subaltern subject unable to effectively speak in her own defense. (shrink)

The rapid growth of online media has led to new complications in journalism ethics and practice. While traditional ethical principles may not fundamentally change when information is disseminated online, applying them across platforms has become more challenging as new kinds of interactions develop between journalists and audiences. In Ethics for Digital Journalists, Lawrie Zion and David Craig draw together the international expertise and experience of journalists and scholars who have all been part of the process of shaping best practices (...) in digital journalism. Drawing on contemporary events and controversies like the Boston Marathon bombing and the Arab Spring, the authors examine emerging best practices in everything from transparency and verification to aggregation, collaboration, live blogging, tweeting and the challenges of digital narratives. At a time when questions of ethics and practice are challenged and subject to intense debate, this book is designed to provide students and practitioners with the insights and skills to realize their potential as professionals. (shrink)

Before sailing past the sirens' “flowery meadow,” Ulysses instructed his sailors to lash him to the mast so that he would not succumb to the siren's singing. His advance directive demonstrated that he valued his dispositional or long-term autonomy over his unquestioned right to make decisions. He also indicated to his oarsmen that he understood the nature of temptation and his inability to resist it. Ideas of autonomy and sexual choice are central to this discussion of new AIDS treatments, especially (...) the trials of preventative vaccines. Questions arise over the rights of individuals and the extent that these should be limited by concerns of the gay community. Should the gay community intervene in the risky decisions of individuals if no explicit advance directive exists? If so, how do they justify their paternalism? Could their aims not be better served through strengthening the individual dispositional autonomy of trial participants rather than making specific claims about the common good? (shrink)

This book examines the intersections of bioethics, human rights and health equity. It does so through the contextual lenses of nation states while presenting global themes on rights, colonialism and bioethics. The book is framed by the following propositions on indigenous health: it is a human rights issue; it is located within the politics of colonization; and subjugated indigenous knowledges require restoring.

Australia has one of the harshest regimes for the processing of asylum seekers, people who have applied for refugee status but are still awaiting an answer. It has received sharp rebuke for its policies from international human rights bodies but continues to exercise its resolve to protect its borders from those seeking protection. One means of doing so is the detention of asylum seekers who arrive in Australia by boat. Health care providers who care for asylum seekers in these conditions (...) experience a conflict of “dual loyalty,” whereby their role in preserving and maintaining the health of patients can run counter to their employment in detention facilities. Many psychiatrists who have worked in the detention setting engage in forms of political activism in order to change the process of seeking refuge. (shrink)

Australia's policy of mandatory indefinite detention of those seeking asylum and arriving without valid documents has led to terrible human rights abuses and cumulative deterioration in health for those incarcerated. We argue that there is an imperative to research and document the plight of those who have suffered at the hands of the Australian government and its agents. However, the normal tools available to those engaged in health research may further erode the rights and well being of this population, requiring (...) a rethink of existing research ethics paradigms to approaches that foster advocacy research and drawing on the voices of those directly affected, including those bestowed with duty of care for this population. (shrink)

This study explores how religious women become legitimate actors in the public sphere and analyzes their agency—its meanings, capacities, and transformative aims. It presents a novel case study of Israeli Modern-Orthodox Agunah activists who engage in highly politicized collective feminist resistance as religious actors working for religious ends. Embedded in and activated by Orthodoxy, they advocate women’s rights to divorce, voicing a moral critique of tradition and its agents precisely because they are devoutly devoted to them. Such political agency is (...) innovatively conceptualized as “devoted resistance”: critique within relationship, enabled by cultural schema, and comprising both interpretive skills and “relational-autonomy” capacities. This study contends that understanding agency within religious grammars reveals its underlying logics, highlighting how structures shape the meanings and realization of women’s varied “agentive capacities.” It challenges current dichotomies like feminism/religion, resistance/submission, and autonomy/dependence. Overall, the author argues for a nuanced, culturally specific, capacity-based, relational approach to analyzing religious women’s agency. (shrink)

This Student's Companion edition lays out, in nontechnical terms, the main ideas contained in Maimonides' famous work Guide of the Perplexed so it can be read by an ambitious beginner or an advanced high school student. It provides a general introduction to Maimonides' life, the plan and outline of the Guide, the required philosophical background, and a concise chapter-by-chapter overview and commentary.

Dual loyalty issues confront health and welfare professionals in immigration detention centres in Australia. There are four apparent ways they deal with the ethical tensions. One group provides services as required by their employing body with little questioning of moral dilemmas. A second group is more overtly aware of the conflicts and works in a mildly subversive manner to provide the best possible care available within a harsh environment. A third group retreats by relinquishing employment in the detention setting. A (...) fourth group is activist in intent and actions. Derived from research and ethnography conducted in Australia, the article explores the moral dilemmas confronting those who are duty-bound by professional codes of ethics while also bound by loyalty to their employers and silenced by confidentiality statements. It provides particular focus on psychiatry, nursing and social work. We conclude by speculating whether a politics of compassion and acts of solidarity can forge a pathway through the ethical terrain. In doing so we draw upon human rights considerations as well as on the works of Joan Tronto and Elisabeth Porter. (shrink)

This article investigates whether or not theories of justice from political philosophy, first, support the position that health research should contribute to justice in global health, and second, provide guidance about what is owed by international clinical research (ICR) actors to parties in low- and middle-income countries. Four theories—John Rawls's theory of justice, the rights-based cosmopolitan theories of Thomas Pogge and Henry Shue, and Jennifer Ruger's health capability paradigm—are evaluated. The article shows that three of the four theories require the (...) conduct of health research for justice in global health. The theories help identify the ends of justice to which ICR is to contribute, but they cannot tell us how to organize ICR to promote these ends. Aside from Ruger's health capability paradigm, the theories also lack an allocative principle for assigning specific duties to specific actors. This creates difficulties for establishing obligations for certain types of ICR actors. (shrink)

This paper explores ethical questions arising from the work of health practitioners in immigration detention centres in Australia. It raises questions about the roles of professional disciplines and the ways in which they confront dual loyalty issues. The exploration is guided by interviews conducted with health professionals who have worked in asylum seeker detention and an examination of the outsider advocacy role undertaken by the social work profession. The paper discusses the stance taken by individuals and professional associations on participation (...) in controlled settings, including as participant, bystander and advocate, and asks when the provision of care becomes collusion with oppression. (shrink)

This paper analyses the way in which being in possession of an adequate range of options is an essential component of autonomy. I discuss the way in which the conceptualisation of options in terms of basic rights might assist this argument, and apply these ideas to HIV/AIDS clinical research in the developing world. Finally, I suggest that mechanisms should be put in place through which vulnerable research participants can express their views about the relationship between the research in which they (...) are involved, and needs of a worthwhile life. (shrink)

Clinical trials in developing countries are often beset by ethical problems that would be considered unresolvable in countries like Australia and the U.S. Nevertheless, such trials continue to go ahead throughout Asia, Africa and South America, and are often conducted in ways that could be considered to be unethical. In this article I discuss two issues, focussing on an HIV preventative trial of a vaginal gel, the Nonoxynol 9 phase three trial being held in Kenya. The first of these is (...) what makes such a trial unethical given that it has approval from the WHO and seemingly conforms with acceptable standards of consent. The second issue involves using material from such trials, if we accept that they were conducted unethically. (shrink)

Research Ethics, Volume 18, Issue 1, Page 51-63, January 2022. Aboriginal and Torres Strait Islander peoples in Australia, have historically experienced research as another means of colonialization and oppression. Although there are existing frameworks, guidelines and policies in place that respond to this history, the risk of exploitation and oppression arising from research still raises challenging ethical questions. Since the 1990s the National Health and Medical Research Council in Australia has developed specific sets of guidelines that govern research with these (...) populations in an attempt to redress injustices of the past. The current guidelines: Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders, 2018, emphasis six core values which are bound together by “spirit and integrity.” The values are reflected through respect for cultural inheritance, and genuine negotiation of partnerships between researchers, other stakeholders, and communities. We examine whether these guidelines can lead to research and research practices that redress some of the ongoing traumas of colonialization and racism. We draw upon Margaret Urban Walker’s formulation of restorative justice, based upon her “pragmatics of repair” which relies upon “voice, validation and vindication” and at its core, the restoration of relationships. (shrink)

The advent of HIV focussed broad social attention on the group of people most affected by it in Australia, the so-called ‘gay community’. However, what a gay community actually was, and what kind of rights and duties were being attached to it remained unclear. However, it is obvious that such a community — or communities — did not fit the model proposed by communitarian writers like Michael Sandel and Charles Taylor, whereby subjects cannot stand outside their own constitutive attachments. I (...) also consider the common criticism of communitarianism, and see what kinds of collectives can in fact be considered ethical.The first part of this paper looks at the ethical issues surrounding community attachment of this kind in Australia in relation to the ethics of HIV/aids clinical research. In particular I examine the way in which certain forms of gay community attachment can be used to strengthen personal autonomy and check exploitation within the prevention and research process.The second part of this paper draws upon the issues just discussed. In particular I focus on the use of ‘community’ in the research process in developing countries, and suggest ways in which cultural considerations might strengthen autonomy. However, I go on to suggest that in many cases the idea of community has served the opposite purpose, and has in fact been used to oppress certain individuals and groups within the developing world, in the so-called interests of the greater good. In order to avoid this, I suggest a model of social and ethical research whereby all subjects and researchers in the clinical process might stand in greater relationships of equality with each other. (shrink)

In a recent edition of the Medical Journal of Australia, Greg Dore and David Cooper called on persons in developed nations like Australia to bridge the divide between resource-rich countries to nations in the developing world, where therapies to ease or halt the ravages of the virus are nonexistent or in short supply.

This article focuses on the location of the duty of loyalty—a unique legal norm in Common Law jurisdictions—both actual and desirable, on the continuum between rules and standards. A rule is a relatively ‘closed’ technical norm, at a high level of specificity; it requires little judicial discretion. A standard is an ‘open’ norm, with a greater degree of flexibility, that requires the exercise of discretion. The insights from this jurisprudential perspective are used to reveal the preferred way for further developing (...) the duty of loyalty. The article explains that ‘loyalty,’ intuitively classified as a ‘pure’ standard, has been reconstructed over time as more specific rules. Moreover, it suggests that, ideally, this movement should continue; namely, when applying loyalty to a specific case, courts should include informative content that would promote predictability. It then illustrates that, unfortunately, this road is not always taken by the courts. A decision to retain loyalty as an ad hoc standard, or an inverse attempt to delineate the boundaries of this norm, has implications on the certainty, consistency, and ethical content of the law. Considering that this duty spreads across different legal fields, personal and commercial, the significance of this discussion becomes all the more evident. (shrink)

The situation around the seeking of refuge, both in Australia and abroad, has become a core human rights issue of our time, engendering protest and activism from the public, researchers, healthcare professionals and academics. The question remains: do bioethicists have duties to advocate on behalf of such populations, and if so, why? I argue that if our work is founded upon the principle of justice, then we do have such duties, and that our research, in itself, can become a form (...) of advocacy. (shrink)

Australia's policy of mandatory indefinite detention of those seeking asylum and arriving without valid documents has led to terrible human rights abuses and cumulative deterioration in health for those incarcerated. We argue that there is an imperative to research and document the plight of those who have suffered at the hands of the Australian government and its agents. However, the normal tools available to those engaged in health research may further erode the rights and well being of this population, requiring (...) a rethink of existing research ethics paradigms to approaches that foster advocacy research and drawing on the voices of those directly affected, including those bestowed with duty of care for this population. (shrink)

Bioethicists have long debated the content of sponsors and researchers' obligations of justice in international clinical research. However, there has been little empirical investigation as to whether and how obligations of responsiveness, ancillary care, post-trial benefits and research capacity strengthening are upheld in low- and middle-income country settings. In this paper, the authors argue that research ethics guidelines need to be more informed by international research practice. Practical guidance on how to fulfil these obligations is needed if research groups and (...) other actors are to successfully translate them into practice because doing so is often a complicated, context-specific process. Case study research methods offer one avenue for collecting data to develop this guidance. The authors describe how such methods have been used in relation to the Shoklo Malaria Research Unit's vivax malaria treatment (VHX) trial (NCT01074905). Relying on the VHX trial example, the paper shows how information can be gathered from not only international clinical researchers but also trial participants, community advisory board members and research funder representatives in order to: (1) measure evidence of responsiveness, provision of ancillary care, access to post-trial benefits and research capacity strengthening in international clinical research; and (2) identify the contextual factors and roles and responsibilities that were instrumental in the fulfilment of these ethical obligations. Such empirical work is necessary to inform the articulation of obligations of justice in international research and to develop guidance on how to fulfil them in order to facilitate better adherence to guidelines' requirements. (shrink)