Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

In the age of globalization, and increased interdependence in the world that we face today, there is a question we may have to raise: Do we need and could we attain a world government, capable of insuring the peace and facilitating worldwide well-being in a just and efficient manner? In the twenty chapters of this book, some of the most prominent living philosophers give their consideration to this question in a provocative and engaging way. Their essays are not only of (...) wide theoretical interest but also provide a thought-provoking approach to this most timely and urgent issue. A wide range of perspectives are represented here. -/- The authors include Richard Falk, Michael Walzer, Thomas Pogge, Larry May, Alfred Rubin, Stanley Hoffman, Jan Narveson, Virginia Held, Pauline Kleingeld and Luis Cabrera. Jovan Babic is Professor of Ethics at the University of Belgrade and Visiting Professor at Portland State University. Petar Bojanic is Senior Research Fellow at the Centre for Ethics, Law and Applied Philosophy (CELAP) as well as the Institute of Philosophy and Social Theory (Belgrade). (shrink)

Neglected and tropical diseases, pervasive in developing countries, are important contributors to global health inequalities. They remain largely untreated due to lack of effective and affordable treatments. Resource-poor countries cannot afford to develop the public health interventions needed to control neglected diseases. In addition, neglected diseases do not represent an attractive market for pharmaceutical industry. Although a number of international commitments, stated in the Millennium Development Goals, have been made to avert the risk of communicable diseases, tropical diseases still remain (...) neglected due to delays in international assistance. This delay can be explained by the form international cooperation has generally taken, which is limited to promoting countries’ national interests, rather than social justice at a global level. This restricts the international responsibility for global inequalities in health to a humanitarian assistance. We propose an alternative view, arguing that expanding the scope of international cooperation by promoting shared health and economic value at a global level will create new opportunities for innovative, effective and affordable interventions worldwide. It will also promote neglected diseases as a global research priority. We build our argument on a proposal to replace the patenting system that currently regulates pharmaceutical research with a global fund to reward this research based on actual decreases in morbidity and mortality at a global level. We argue that this approach is beneficent because it will decrease global health inequalities and promote social justice worldwide. (shrink)

Justice and Health Care: Selected Essays collects, in a systematic but non-chronological fashion, ten of Buchanan’s most significant essays on justice and health care, written over a period of almost three decades. As the Obama administration continues to struggle to implement much-needed comprehensive health care reform in the hopes of controlling rising health care costs and extending affordable health care to over 46 million uninsured Americans, there could hardly be a more appropriate time to read Buchanan’s selected essays.

A common understanding of the political function of human rights is as a trigger for international intervention, with states typically understood to be duty bound by these rights claims. The unique character of the human right to health raises some complications for these conventional views. In this paper, I will argue that because of the unique character of the human right to health, intervention on its behalf can be justified not only in response to outright violation, but also due to (...) unmet needs of populations. As a secondary goal of this paper, I will attempt to respond to some of the worries about cultural imperialism in human rights and cross-cultural humanitarian interventions, specifically in the context of global health justice. (shrink)

The article presents a novel normative model of shared responsibility for remedying unjust labor conditions and protecting workers’ rights in global supply chains. While existing literature on labor governance in the globalized economy tends to focus on empirical and conceptual investigations, the article contributes to the emerging scholarship by proposing moral justifications for labor governance schemes that go beyond voluntary private regulations and include public enforcement mechanisms. Drawing on normative theories of justice and on empirical-legal research, our Labor Model of (...) Shared Responsibility introduces three main claims: First, that responsibility for protecting and promoting labor standards in global supply chains should be shared by all private and institutional actors involved (whether directly or indirectly) in the production and distribution processes. Second, we offer a normative model for allocating responsibility among the various actors, based on five principles: connectedness, contribution, benefit, capacity, and power. Last, we demonstrate how the normative model could be implemented through various national and international institutional mechanisms. (shrink)

The article presents a novel normative model of shared responsibility for remedying unjust labor conditions and protecting workers’ rights in global supply chains. While existing literature on labor governance in the globalized economy tends to focus on empirical and conceptual investigations, the article contributes to the emerging scholarship by proposing moral justifications for labor governance schemes that go beyond voluntary private regulations and include public enforcement mechanisms. Drawing on normative theories of justice and on empirical-legal research, our Labor Model of (...) Shared Responsibility introduces three main claims: First, that responsibility for protecting and promoting labor standards in global supply chains should be shared by all private and institutional actors involved (whether directly or indirectly) in the production and distribution processes. Second, we offer a normative model for allocating responsibility among the various actors, based on five principles: connectedness, contribution, benefit, capacity, and power. Last, we demonstrate how the normative model could be implemented through various national and international institutional mechanisms. (shrink)