History, Principles and Practice of Health and Human Rights

Chapter 2

History, Principles and Practice of Health and Human Rights

Sofia Gruskin, Edward J. Mills and Daniel Tarantola

Introduction

Blatant violation of human rights affecting the health of both individuals and populations continues. Examples include the torture of detainees in Abu-Ghraib prison in Iraq;¹ systematic rapes and murders in the Balkans,² Rwanda,³ Chechnya,⁴ and Darfur;⁵ physician involvement in torture,⁶ botched executions;⁷ inhumane experimentation;⁸ and questionable interrogation techniques in the so-called war on terror.^{1, 9, 10} Such violations of human rights can be engineered by or endorsed by governments, institutions of power, and individuals. These deplorable violations exist alongside more subtle activities that also have severe and long lasting effects on health and human rights such as absence of basic healthcare systems;¹¹ policies keeping medicines unaffordable;¹² and tolerance of discrimination against groups such as injecting drug users,¹³ people with mental-health disorders,^{14, 15} illegal immigrants,¹⁶ or homeless people.17 The continuing and foreseeable absence of access to effective care for most people living with most diseases in poor countries can also be viewed as a violation of human rights.¹⁸ Therefore human rights should be imperative in delivery of care and implementation of public-health programmes.

Three main relations between health and human rights exist: the positive and negative effects on health of promotion, neglect, or violation of human rights; the effect of health on the delivery of human rights; and the effects of public health policies and programmes on human rights.¹⁹

Despite the advances in the study and advocacy of health and human rights we still do not fully understand the nature of these relationships, how they interact, or their value to medicine and public health practice. In this chapter we address the public health aspects of these relations, and highlight where further research and action are needed.

A Brief History of Health and Human Rights

Since the Nuremberg trials and the creation of the UN more than 50 years ago, interest in the association between health and human rights has grown. Until the beginning of the AIDS epidemic in the 1980s and the end of the Cold War, these two issues evolved along parallel but distinctly separate tracks,²⁰ perhaps as a consequence of the state-centric (i.e., greater political concern for general state and public interests than for specific individuals or communities) view of the world that prevailed in the second half of the 20th century. However, governments have a responsibility both to deliver essential health and social services, and to enable people and their families to achieve better health by respecting human rights.

In the past 20 years, the HIV/AIDS pandemic and reproductive and sexual health concerns have been instrumental in clarifying the ways that health and rights connect. These issues encompass law and policymaking, and have established the roles and boundaries of responsibility held by state and non-state stakeholders for the conditions that constrain or enable health and for delivery of health and related services.²¹ The first worldwide public health strategy to explicitly engage with human rights concerns took place in the late 1980s, when Jonathan Mann directed the Global Program on AIDS at WHO.²² Although this strategy was partly motivated by moral outrage at abuses suffered by people living with HIV, the inclusion of human rights was primarily because evidence was emerging that showed that discrimination was driving people away from prevention and care programmes.²³

Elimination of such discrimination was expected to encourage people not only to fully exert their rights, but also to come forward for voluntary counselling, testing, and treatment of opportunistic infections. Uptake of these services would in turn help them safeguard their dignity, improve their health and wellbeing, and motivate them to adopt behaviours that would restrict further spread of infection. That this strategy— upholding human-rights principles—was set forth by WHO, an inter-governmental organisation with responsibilities for promotion of rights conferred by the UN Charter, placed it in the realm of international law.²⁴ As a result, governments and inter-governmental organisations were made publicly accountable for their public health and human rights actions (or inactions). Since the 1980s, responses to the HIV pandemic have drawn attention to the rights of the most vulnerable people and societies, and the need to prevent discrimination in both law and practice.²⁵

A series of international conferences held by the UN, beginning in the early 1990s, further solidified the dual obligations of governments to the health and human rights of their people.²¹ These conferences brought together emotions and values, but also the experiences of local, national, and international practitioners (physicians, nurses, and other health workers), advocates, and policymakers. The 1997 Program for Reform, designed by Kofi Annan, then UN Secretary General, highlighted the promotion of human rights as a core activity of the UN, which was another important step in moving issues of health and human rights from rhetoric to implementation, action, and accountability.²⁶

Almost all development agencies, organisations and UN programmes,²⁷ albeit to varying degrees of success, now pay attention to human rights in their work in health. Additionally, many governments are beginning to integrate their human rights obligations into their health-related activities, both in high-income and low-income countries.²⁸ In addition to members of affected populations, medical practitioners have also contributed to bringing human rights into health through their advocacy and practice.^{29, 30} Nonetheless, integration of human rights in health efforts clearly still has a long way to go.

Human Rights and Health Policy

The links between human rights and health are best understood by referring to the preface to the WHO constitution, which states that health is the “state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity” and “the highest attainable level of health is the fundamental right of every human being.”³¹ Governments are therefore responsible for enabling their populations to achieve better health through respecting, protecting, and fulfilling rights (i.e., not violating rights, preventing rights violations, and creating policies, structures, and resources that promote and enforce rights).³² This responsibility extends beyond the provision of essential health services to tackling the determinants of health such as, provision of adequate education, housing, food, and favourable working conditions. These items are both human rights themselves and are necessary for health.^{33, 34} The relation of people with their environment is complex and the fulfilment—or absence— of human rights and their effects on the main determinants of health needs much investigation.

Human rights encompass civil, political, economic, social, and cultural rights. These rights are cast in international law, through many treaties and declarations, beginning with the UN Universal Declaration of Human Rights in 1948.^35–41 These documents highlight the importance of promotion and protection of human rights as a prerequisite to health and wellbeing. Although one can devote attention and resources to one specific right, or to a category of closely connected rights, all rights are interdependent and interrelated,⁴² and as a result individuals rarely suffer neglect or violation of one right in isolation.

Economic, social, and cultural rights, such as education and food, are relevant to health, as are such civil and political rights as those relating to life, autonomy, information, free movement, association, equality, and participation. Recognition of the legal and political obligations that connect economic, social, and cultural rights, as well as civil and political rights, continues to grow. The right to the highest attainable standard of health therefore builds on, but is by no means limited to, Article 12 of the UN International Covenant on Economic, Social, and Cultural Rights (ICESCR).⁴³ It transcends almost every other right.

Although the right to health forms the legal basis for much of the present work in health and human rights, if written today it would probably place greater emphasis on health rather than sickness and on health systems rather than provision of medical care. Addressing the effects of discrimination, gender-related or otherwise, on health and delivery of services is well covered by other rights, again showing how human rights are intertwined.⁴⁴

The legal obligation of states to respect health-related rights is only one part of the picture, because rights are also used to guide policies and programmes for health and wellbeing. They enable a broad response to health and development by national and international stakeholders with responsibilities that reach beyond the health sector. Thus, although international treaties, enriched by declarations and related documents, have legal implications, they importantly can also inform the development of policies and programmes in all states, whether or not a state has signed to be legally bound by the relevant treaty.

Applying Human Rights to Health

The idea of health and human rights as a subject of study is fairly new, and we need to recognise the different ways in which advances in health and human rights can be achieved. Human rights feature in many different ways in the health work of international nongovernmental organisations, governments, civil society groups, and individuals. These ways can be broadly categorised as advocacy, application of legal standards, and programming (including service delivery).⁴⁵ Some stakeholders use one approach; others use a combination in their work. We use HIV/AIDS as the main example to show the effectiveness of these approaches, although examples in reproductive health,⁴⁶ mental health,⁴⁷ disability,⁴⁸ neglected diseases,⁴⁹ or other serious health issues could effectively serve as illustrations.

Development of new treatments and the investment of substantial and increasing resources to offer these treatments to people living with HIV have resulted in access to treatment and care for some people. These people gain substantial duration and quality of life, allowing them to participate actively in political, civil, economic, social, and cultural activities. By contrast, despite global initiatives to increase access in resource-poor places, progress has been slow and remains below expectations.⁵⁰

Advocacy and Bearing Witness

The model of health and human rights is often used in campaigns for changes in health-related policy and practice. Early campaigns as a response to some governments’ complacency in dealing with AIDS illustrated the success of this approach and set a precedent for health campaigns around the world.^{51, 52} The focus of activism is often on recognition and exposure of governmental obligations, establishing the amount of government action or inaction that contributes to existing violations, looking at how a government deals or does not deal with identified problems, and recommending solutions.

Since the turn of the century, the pharmaceutical industry has lowered the price of antiretroviral drugs in low-income countries to less than ten percent of their cost in 2000,⁵³