Health and Human Rights in a Changing World

Michael Grodin, Daniel Tarantola, George Annas, Sofia Gruskin, Michael Grodin, Daniel Tarantola, George Annas, Sofia Gruskin

• Publisher: Routledge
• Year: 2013
• Print ISBN: 9780415503990
• eBook ISBN: 9781136688638
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Health and Human Rights in a Changing World is a comprehensive and contemporary collection of readings and original material examining health and human rights from a global perspective. Editors Grodin, Tarantola, Annas, and Gruskin are well-known for their previous two volumes (published by Routledge) on this increasingly important subject to the global community. The editors have contextualized each of the five sections with foundational essays; each reading concludes with discussion topics, questions, and suggested readings. This book also includes Points of View sections—originally written perspectives by important authors in the field.

Section I is a Health and Human Rights Overview that lays out the essential knowledge base and provides the foundation for the following sections.

Section II brings in notions of concepts, methods, and governance framing the application of health and human rights, in particular the Human Rights-based Approaches to Health. Section III sheds light on issues of heightened vulnerability and special protection, stressing that the health and human rights record of any nation, any community, is determined by what is being done and not done about those who are most in need.

Section IV focuses on addressing system failures where health and human rights issues have been documented, recognized, even at times proclaimed as priorities, and yet insufficiently attended to as a result of State denial, unwillingness, or incapacity.

Section V examines the relevance of the health and human rights paradigm to a changing world, underscoring contemporary global challenges and responses.

Finally, a Concluding Note brings together the key themes of this set of articles and attempts to project a vision of the future.

Part I

Health and Human Rights Overview

Introduction

History is always important, even when it’s a young history. Health and human rights is now widely recognized as a field of inquiry but this was not always the case. This first part of the book provides key pieces which have helped to promote clear thinking about the linkages between health and human rights, and to establishing the conceptual rigor of the field of health and human rights as we know it today.

It has been two decades since publication of the first chapter by Jonathan Mann and colleagues in 1994 set the basis for development of what is now understood to be the field of health and human rights. Since the early stages of the women’s health, mental health, reproductive health, and indigenous health movements it has been asserted that public health policies and programs must be cognizant and respectful of human rights norms and standards. It was also thought that lack of respect for human rights hampered the effectiveness of public health policies and programs. Under Mann’s leadership, an important first step in developing the health and human rights field was to draw attention, in particular, to the connections between the rights of people living with HIV and an effective public health response. Drawing on insights from the AIDS field, this piece presents the start of the conceptual work that has since emerged on the linkages between health and rights. As a result of this first piece, different approaches and areas where health and human rights were already being linked began to be heard and debated, courses to sensitize new generations of public health and other professionals to the value of exploring these linkages were started, and the conceptual and empirical development of the field began.

Within a short time, the question of “why” health and human rights had shifted to “how.” How to do it in practice and what it meant to link these areas of research and study. Even as many thought the relationships between health and human rights made intuitive sense, it took development of a “health and human rights” language and the explicit naming of the connections between health and human rights to underpin and legitimize the conceptual, analytical, and empirical work that followed. Two pieces are included here which introduce this history. The chapter by Gruskin, Mills and Tarantola emphasizes the role that health professionals can play in reducing and preventing human rights violations, as well as in ensuring that health-related policies and practices promote rights. It discusses the changing views of human rights, with particular attention to HIV, and propose further development of the right to health through increased practice, evidence, and action. The piece that follows by Tarantola and Gruskin also draws from the experience gained in the global response to AIDS, and goes on to summarize ways in which key dimensions of public health and of human rights intersect and may be used as a framework for health policy analysis, development, and evaluation. Kirby then provides a compelling and personal set of insights on the history of the health and human rights movement.

As the field is still new, efforts are needed to ensure a rigorous and coherent approach to scholarship, which not only establishes the theoretical foundations for the field but also demonstrates tangible impacts. The piece by Paul Hunt, the former Special Rapporteur on the Right to the Highest Attainable Standard of Health, and his colleague Gunilla Backman, builds on established conceptual work in both the human rights and public health arenas to show how practical application of the right to the highest attainable standard of health can result in an effective and integrated health system. By systematically applying the recognized components of the right to health across the “building blocks” that together are understood by the World Health Organization and others to constitute a functioning health system, this article begins to bridge theory and practice.

To illuminate the distinct contributions offered by linking human rights to health, engagement with the various frameworks concerned with justice in health is necessary. In particular, the distinct relationship between bieoethics and the health field has highlighted important synergies with human rights, as well as places where each provide distinct contributions. Initially, there was the need to clarify why those engaged in health, as broadly defined, had to be concerned with human rights—as it was thought that ethics offered all that was needed for those with an interest in justice and health. At the outset of the health and human rights movement, Jonathan Mann argued that ethics was the natural language of medicine and human rights, the natural language of public health—and this formulation seemed just right. The Andorno article on “bioethics at UNESCO” outlines the controversies behind the new Universal Declaration of Bioethics and Human Rights, a major accomplishment by 180 nations. The UNESCO challenge is to recognize that while human rights are universal, and ethics more situational, there are commonalities and that, as the world shrinks and global health becomes more prominent, it makes sense to try to agree upon global bioethical standards that are consistent with human rights.

The first major document incorporating human rights principles into an area of direct concern to health professionals was the Nuremberg Code. We include an edited version of General Telford Taylor’s opening statement at the 1946–7 trial of the Nazi doctors which led to articulation of the Code in the Judgment to provide a true piece of “living history.” The Nazi Doctors were being tried for crimes against humanity and war crimes involving the murder and torture of concentration camp prisoners in a variety of barbaric human “experiments.” The Code stands to this day as the most authoritative statement of rules for the proper conduct of research on human subjects, and is one the first clear articulations of the relationship between human rights and bioethics, and arguably as the birth of bioethics itself.

We close this part with a piece by Annas which takes a wide-ranging view introducing and reflecting on links between emergence of the health and human rights movement, with the fields of bioethics and social justice. Each has distinct value and, as Annas demonstrates, the differences in the paradigms they represent in particular with respect to means of observance, action, and enforcement if brought together explicitly have the potential to strengthen the work of all concerned with health and well-being. Drawing on popular culture and well-known references, and using examples drawn from the world of clinical research trials, as well as the nefarious impacts of globalization on health and rights, to make his points, Annas provides an intellectually grounded and entertaining argument for strengthening work in global health through explicit and conscious attention to human rights by governments, NGOs, and even transnational corporations.

Taken together, these pieces clarify the value of application of human rights norms and standards, both individually and in relation to other theoretical constructs, to address the underlying determinants of health, improve the delivery of health services, and ultimately impact health outcomes. Work in health and human rights is, by necessity, interdisciplinary. It requires the strengths of a range of disciplines, departments and schools, including public health, medicine, law, economics, international relations, communications, philosophy and the social sciences. The emphasis on the “AND” in “health and human rights” is at the forefront of bringing together this range of disciplines to advance fruitful conceptual work, empirical research, and applied programs. The ultimate goal has to be to generate cutting-edge scholarship on the links between health and human rights, and ultimately to yield the critical insights that can illuminate the forces and factors that shape—and the work that can be done to improve—population health around the world.

Topics for Discussion

1. Consider the historical evolution of the health and human rights movement, and its initial groundings in various health topics. Why do you think that it was not until the HIV pandemic that global attention to the links between health and rights began to be understood and acted upon?
2. Name some current examples of human rights violations that have a significant impact on health. Consider both short- and long-term implications.
3. Cite some examples of policies or programs raising concerns about rights being infringed upon.
4. Take one health topic (e.g. tuberculosis, the rise of non-communicable disease, or the provision of abortion services), and consider the differences between application of a human rights lens, a social justice lens, and a bioethics framework as to how you would analyze and address the topic.

Chapter 1

Health and Human Rights

Jonathan M. Mann, Lawrence O. Gostin, Sofia Gruskin, Troyen Brennan, Zita Lazzarini and Harvey V. Fineberg

Health and human rights have rarely been linked in an explicit manner. With few exceptions, notably involving access to health care, discussions about health have rarely included human rights considerations. Similarly, except when obvious damage to health is the primary manifestation of a human rights abuse, such as with torture, health perspectives have been generally absent from human rights discourse.

Explanations for the dearth of communication between the fields of health and human rights include differing philosophical perspectives, vocabularies, professional recruitment and training, societal roles, and methods of work. In addition, modern concepts of both health and human rights are complex and steadily evolving. On a practical level, health workers may wonder about the applicability or utility (“added value”), let alone necessity of incorporating human rights perspectives into their work, and vice versa. In addition, despite pioneering work seeking to bridge this gap in bioethics,^1,2 jurisprudence,³ and public health law,^4,5 a history of conflict-ual relationships between medicine and law, or between public health officials and civil liberty advocates, may contribute to anxiety and doubt about the potential for mutually beneficial collaboration.

Yet health and human rights are both powerful, modern approaches to defining and advancing human well-being. Attention to the intersection of health and human rights may provide practical benefits to those engaged in health or human rights work, may help reorient thinking about major global health challenges, and may contribute to broadening human rights thinking and practice. However, meaningful dialogue about interactions between health and human rights requires a common ground. To this end, following a brief overview of selected features of modern health and human rights, this chapter proposes a provisional, mutually accessible framework for structuring discussions about research, promoting cross-disciplinary education, and exploring the potential for health and human rights collaboration.

Modern Concepts of Health

Modern concepts of health derive from two related although quite different disciplines: medicine and public health. While medicine generally focuses on the health of an individual, public health emphasizes the health of populations. To oversimplify, individual health has been the concern of medical and other health care services, generally in the context of physical (and, to a lesser extent, mental) illness and disability. In contrast, public health has been defined as, “… [ensuring] the conditions in which people can be healthy.”⁶ Thus, public health has a distinct health-promoting goal and emphasizes prevention of disease, disability and premature death.

Therefore, from a public health perspective, while the availability of medical and other health care constitutes one of the essential conditions for health, it is not synonymous with “health.” Only a small fraction of the variance of health status among populations can reasonably be attributed to health care; health care is necessary but clearly not sufficient for health.⁷

The most widely used modern definition of health was developed by the World Health Organization (WHO): “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”⁸ Through this definition, WHO has helped to move health thinking beyond a limited, biomedical and pathology-based perspective to the more positive domain of “well-being.” Also, by explicitly including the mental and social dimensions of well-being, WHO radically expanded the scope of health, and by extension, the roles and responsibilities of health professionals and their relationship to the larger society.

The WHO definition also highlights the importance of health promotion, defined as “the process of enabling people to increase control over, and to improve, their health.” To do so, “an individual or group must be able to identify and realize aspirations, to satisfy needs, and to change or cope with the environment.”⁹ The societal dimensions of this effort were emphasized in the Declaration of Alma-Ata (1978), which described health as a “… social goal whose realization requires the action of many other social and economic sectors in addition to the health sector.”¹⁰

Thus, the modern concept of health includes yet goes beyond health care to embrace the broader societal dimensions and context of individual and population well-being. Perhaps the most far-reaching statement about the expanded scope of health is contained in the preamble to the WHO Constitution, which declared that “the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being.”¹¹

Modern Human Rights

The modern idea of human rights is similarly vibrant, hopeful, ambitious and complex. While there is a long history to human rights thinking, agreement was reached that all people are “born free and equal in dignity and rights”¹² when the promotion of human rights was identified as a principal purpose of the United Nations in 1945.¹³ Then, in 1948, the Universal Declaration of Human Rights was adopted as a universal or common standard of achievement for all peoples and all nations.

The preamble to the Universal Declaration proposes that human rights and dignity are self-evident, the “highest aspiration of the common people,” and “the foundation of freedom, justice and peace.” “Social progress and better standards of life in larger freedom,” including the prevention of “barbarous acts which have outraged the conscience of mankind,” and, broadly speaking, individual and collective well-being, are considered to depend upon the “promotion of universal respect for and observance of human rights.”

Several fundamental characteristics of modern human rights include: they are rights of individuals; these rights inhere in individuals because they are human; they apply to all people around the world; and they principally involve the relationship between the state and the individual. The specific rights which form the corpus of human rights law are listed in several key documents. Foremost is the Universal Declaration of Human Rights (UDHR), which, along with the United Nations Charter (UN Charter), the International Covenant on Civil and Political Rights (ICCPR)— and its Optional Protocols—and the International Covenant on Economic, Social and Cultural Rights (ICESCR), constitute what i...

Table of contents

• Cover Page
• Half Title Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Acknowledgments
• Introduction
• Part I: Health and Human Rights Overview
• Part II: Concepts, Methods and Governance
• Part III: Heightened Vulnerability and the Need for Special Protection
• Part IV: Addressing System Failures
• Part V: Changing World
• Concluding Note
• Researching Health and Human Rights
• Credit Lines
• About the Contributors
• About the Editors
• Index