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)

It has been suggested that community advisory boards can play a role in minimising exploitation in international research. To get a better idea of what this requires and whether it might be achievable, the paper first describes core elements that we suggest must be in place for a CAB to reduce the potential for exploitation. The paper then examines a CAB established by the Shoklo Malaria Research Unit under conditions common in resource-poor settings – namely, where individuals join with a (...) very limited understanding of disease and medical research and where an existing organisational structure is not relied upon to serve as the CAB. Using the Tak Province Border Community Ethics Advisory Board as a case study, we assess the extent to which it might be able to take on a role minimising exploitation were it to decide to do so. We investigate whether, after two years in operation, T-CAB is capable of assessing clinical trials for exploitative features and addressing those found to have them. The findings show that, although T-CAB members have gained knowledge and developed capacities that are foundational for one-day taking on a role to reduce exploitation, their ability to critically evaluate studies for the presence of exploitative elements has not yet been strongly demonstrated. In light of this example, we argue that CABs may not be able to perform such a role for a number of years after initial formation, making it an unsuitable responsibility for many short-term CABs. (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)

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)

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 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)

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)

Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by (...) pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies. (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)

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.

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)