Deborah Zion

Returning to History: The Ethics of Researching Asylum Seeker Health in Australia

Australias 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.

Exploitation and community engagement: can community advisory boards successfully assume a role minimising exploitation in international research?

It has been suggested that community advisory boards (CABs) 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 (T-CAB) 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.

Evaluating the Capacity of Theories of Justice to Serve as a Justice Framework for International Clinical Research

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 Rawlss theory of justice, the rights-based cosmopolitan theories of Thomas Pogge and Henry Shue, and Jennifer Rugers 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 Rugers 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.

Nursing in asylum seeker detention in Australia: care, rights and witnessing

The system of asylum seeker detention in Australia is one in which those seeking refuge are stripped of many of their rights, including the right to health. This presents serious ethical problems for healthcare providers working within this system. In this article we describe asylum seeker detention and analyse the role of nurses. We discuss how far an “ethics of care” and witnessing the suffering of asylum seekers can serve to improve their situation and improve ethical nursing practice.

Care or Collusion in Asylum Seeker Detention

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.

Challenge and collusion: health professionals and immigration detention in Australia

This article describes the impact of immigration detention on the health of asylum seekers. Drawing on specific examples, it explores the roles of professional staff working within the detention system and/or challenging the practices as advocates. Using oral testimony from a citizen-initiated campaign, The Peoples Inquiry into Detention, we interrogate the harmful experiences of force-feeding, deportation practices and the incarceration of children, including the role of the health professionals who sometimes betrayed their duty of care. Discussed are the paradoxes of dual loyalty and professional ethics.

Ancillary Care: From Theory to Practice in International Clinical Research

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.

The Health Care Consequences Of Australian Immigration Policies

Deborah Zion and colleagues discuss the “dual loyalty” conflict affecting Australian health care providers involved in the care of asylum seekers.

Psychiatric ethics and a politics of compassion: the case of detained asylum seekers in Australia

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.

Why Do People Participate in Epidemiological Research

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.