In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and in evaluating the ethics of proposed research proposals (...) when research ethics committees assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations. (shrink)

Critics of a politics of difference have misidentified these social movements as asserting an identity politics of recognition. Most of these movements are better understood as resisting unjust structural inequalities. Inclusive democratic process involves paying specific attention to group differences in order to transform preferences and maximize social knowledge.

In this book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: what is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels' theory has implications for national and global health policy: can we meet health needs fairly in ageing societies? Or protect health in the workplace while respecting individual liberty? Or (...) meet professional obligations and obligations of justice without conflict? When is an effort to reduce health disparities, or to set priorities in realising a human right to health, fair? What do richer, healthier societies owe poorer, sicker societies? Just Health: Meeting Health Needs Fairly explores the many ways that social justice is good for the health of populations in developed and developing countries. (shrink)

The most widely debated conception of democracy in recent years is deliberative democracy--the idea that citizens or their representatives owe each other mutually acceptable reasons for the laws they enact. Two prominent voices in the ongoing discussion are Amy Gutmann and Dennis Thompson. In Why Deliberative Democracy?, they move the debate forward beyond their influential book, Democracy and Disagreement.What exactly is deliberative democracy? Why is it more defensible than its rivals? By offering clear answers to these timely questions, Gutmann and (...) Thompson illuminate the theory and practice of justifying public policies in contemporary democracies. They not only develop their theory of deliberative democracy in new directions but also apply it to new practical problems. They discuss bioethics, health care, truth commissions, educational policy, and decisions to declare war. In "What Deliberative Democracy Means," which opens this collection of essays, they provide the most accessible exposition of deliberative democracy to date. They show how deliberative democracy should play an important role even in the debates about military intervention abroad.Why Deliberative Democracy? contributes to our understanding of how democratic citizens and their representatives can make justifiable decisions for their society in the face of the fundamental disagreements that are inevitable in diverse societies. Gutmann and Thompson provide a balanced and fair-minded approach that will benefit anyone intent on giving reason and reciprocity a more prominent place in politics than power and special interests. (shrink)

This latest work from one of the world's leading political philosophers will appeal to audiences from a variety of fields, including philosophy, political science, women's studies, ethnic studies, sociology, and communications studies.

Bioethics' traditional focus on clinical relationships and exotic technologies has led the field away from population health, health disparities, and issues of justice. The result: a myopic view that misses the institutional context in which clinical relationships operate and can overlook factors that affect health more broadly than do exotic technologies. A broader bioethics agenda would take up unresolved questions about the distribution of health and the development of fair policies that affect health distribution.

The debate over when medical research may be performed in developing countries has steered clear of the broad issues of social justice in favor of what seem more tractable, practical issues. A better approach will reframe the question of justice in international research in a way that makes explicit the links between medical research, the social determinants of health, and global justice.

Thomas Pogge tries to explain the attitude of affluent populations to world poverty. One or two per cent of the wealth of the richer nations could help in eradicating much of the poverty and Pogge presents a powerful moral argument.

In bioethics, discussions of justice have tended to focus on questions of fairness in access to health care: is there a right to medical treatment, and how should priorities be set when medical resources are scarce. But health care is only one of many factors that determine the extent to which people live healthy lives, and fairness is not the only consideration in determining whether a health policy is just. In this pathbreaking book, senior bioethicists Powers and Faden confront foundational (...) issues about health and justice. How much inequality in health can a just society tolerate. The audience for the book is scholars and students of bioethics and moral and political philosophy, as well as anyone interested in public health and health policy. (shrink)

How international research might contribute to justice in global health has not been substantively addressed by bioethics. Theories of justice from political philosophy establish obligations for parties from high‐income countries owed to parties from low and middle‐income countries. We have developed a new framework that is based on Jennifer Ruger's health capability paradigm to strengthen the link between international clinical research and justice in global health. The ‘research for health justice’ framework provides direction on three aspects of international clinical research: (...) the research target, research capacity strengthening, and post‐trial benefits. It identifies the obligations of justice owed by national governments, research funders, research sponsors, and investigators to trial participants and host communities. These obligations vary from those currently articulated in international research ethics guidelines. Ethical requirements of a different kind are needed if international clinical research is to advance global health equity. (shrink)

Imprecise definition of key terms in the “public participation” domain have hindered the conduct of good research and militated against the development and implementation of effective participation practices. In this article, we define key concepts in the domain: public communication, public consultation, and public participation. These concepts are differentiated according to the nature and flow of information between exercise sponsors and participants. According to such an information flow perspective, an exercise’s effectiveness may be ascertained by the efficiency with which full, (...) relevant information is elicited from all appropriate sources, transferred to all appropriate recipients, and combined to give an aggregate/consensual response. Key variables that may theoretically affect effectiveness—and on which engagement mechanisms differ—are identified and used to develop a typology of mechanisms. The resultant typology reveals four communication, six consultation, and four participation mechanism classes. Limitations to the typology are discussed, and future research needs identified. (shrink)

ABSTRACT This paper focuses on poverty and inequality in the world today. First, it points out how this topic is a main concern for the IAB. Second, it proposes ‘new’ theoretical tools in order to analyze global justice and our obligations towards the needy. I present John Rawls's denial that the egalitarian principle can be applied to the global sphere, his proposed weak duty of assistance, and his consideration of endemic poverty as essentially homegrown. In opposition, I focus on Thomas (...) Pogge as representative of a cosmopolitan view who also holds a critical position towards the international systems which allow and cause poverty. I endorse the general normative proposal that defends every human being as an ultimate unit of moral concern, as well as the strategy of moving away from the charity model of bilateral aid to the realm of rights and duties. These ideas should redesign and broaden the normative and practical roles of institutions, and should also help provide a new approach on bioethical issues such as drug patenting or the imbalance in global research and neglected diseases. (shrink)

Recent scholarship has considered what, if anything, rich people owe to poor people to achieve justice in global health and the implications of this for international research. Yet this work has primarily focused on international clinical research. Health systems research is increasingly being performed in low and middle income countries and is essential to reducing global health disparities. This paper provides an initial description of the ethical issues related to priority setting, capacity-building, and the provision of post-study benefits that arise (...) during the conduct of such research. It presents a selection of issues discussed in the health systems research literature and argues that they constitute ethical concerns based on their being inconsistent with a particular theory of global justice (the health capability paradigm). Issues identified include the fact that priority setting for health systems research at the global level is often not driven by national priorities and that capacity-building efforts frequently utilize one-size-fits-all approaches. (shrink)

Following promulgation of the Nuremberg code in 1947, the ethics of research on human subjects has been a challenging and often contentious topic of debate. Escalation in the use of research participants in low-income countries over recent decades , has intensified the debate on the ethics of international research and led to increasing attention both to exploitation of vulnerable subjects and to considerations of how the 10:90 gap in health and medical research could be narrowed. In 2000, prompted by the (...) discussions over several years that led to the US NIH launching a capacity building programme on research ethics for members of research ethics committees in developing countries, we advanced a ‘new look’ for the ethics of international research.1 Since then progress has been made on several fronts.First, our ideas—considered somewhat radical and impractical at the time—have been provocatively addressed by scholars who have either contested them or advanced similar conceptions of what obligations international researchers have to research participants and communities in low income countries before, during and after clinical trials. Second, those researchers who have been sympathetic to our ideas have either endeavoured to put these into practice or have investigated the feasibility of doing so. Third, the intractability of the 10/90 gap and the escalation of interest in global health have sensitised many to the need to amplify the uptake of these ideas in practice.Here, we briefly review the conceptual and practical developments in international research ethics. While much conceptual progress has been made (and the concepts are now appearing …. (shrink)

How international research might contribute to justice in global health has not been substantively addressed by bioethics. Theories of justice from political philosophy establish obligations for parties from high-income countries owed to parties from low and middle-income countries. We have developed a new framework that is based on Jennifer Ruger's health capability paradigm to strengthen the link between international clinical research and justice in global health. The ‘research for health justice’ framework provides direction on three aspects of international clinical research: (...) the research target, research capacity strengthening, and post-trial benefits. It identifies the obligations of justice owed by national governments, research funders, research sponsors, and investigators to trial participants and host communities. These obligations vary from those currently articulated in international research ethics guidelines. Ethical requirements of a different kind are needed if international clinical research is to advance global health equity. (shrink)