The origin and justification for human rights, whether anchored in natural law, positive law, or other theories and approaches laid out by various authors, as well as their cultural specificity and actual value as international legal commitments, remains subject to ongoing lively debate. Theoretical and rhetorical discourses continue to challenge and enrich current understanding of the relevance of human rights for policy and governance. Nonetheless, human rights have found their way into public health and play today an increasing role in the shaping of health policies, programs, and practice.
Health and human rights are not distinct but intertwined aspirations. Viewed as a universal aspiration, the notion of health as the attainment of physical, mental, and social well-being implies its dependency on and contribution to the realization of all human rights. From the same perspective, the enjoyment by everyone of the highest attainable standard of physical and mental health is in itself a recognized human right. From a global normative perspective, health and human rights are closely intertwined in many international treaties and declarations supported by mechanisms of monitoring and accountability (even as their effectiveness can be questioned) that draw from both fields.
With respect to health specifically, it is arguably viewed as an important prerequisite for and desirable outcome of human development and progress. Health is
… directly constitutive of the person’s well-being and it enables a person to function as an agent—that is, to pursue the various goals and projects in life that she has reason to value.
(Anand, 2004: 17–18)
Health is also the most extensively measured component of well-being; it benefits from dedicated services and is commonly seen as a sine-qua-non for the fulfillment of all other aspirations. It may also be … “a marker, a way of keeping score of how well the society is doing in delivering well-being” (Marmot, 2004: 37).
Health and human rights individually occupy privileged places in the public discourse, political debates, public policy, and the media, and both are at the top of human aspirations. There is hardly a proposed political agenda that does not refer to health in its own right, as well as justice, security, housing, education, and employment opportunities—all with relevance to health. These aspirations are often not framed as human rights but the fact that they are contained in human rights treaties and often translated into national constitutions and legislations provides legal support for efforts in these areas.
Incorporating human rights in public health policy therefore responds to the demands of people, policy makers, and political leaders for outcomes that meet public aspirations. It also creates opportunities for helping decipher how all human rights and other determinants of well-being and social progress interact. It allows progress toward these goals to be measured and shapes policy directions and agendas for action.
This chapter highlights the evolution that has brought human rights and health together in mutually reinforcing ways. It draws from the experience gained in the global response to HIV/AIDS, summarizes key dimensions of public health and of human rights and suggests a manner in which these dimensions intersect that may be used as a framework for health policy analysis, development, and evaluation.
Human Rights as Governmental Obligations
Human rights constitute a set of normative principles and standards which, as a philosophical concept can be traced back to antiquity, with mounting interest among intellectuals and political leaders since the seventeenth century (Tomushat, 2003). The atrocities perpetrated during World War II gave rise, in 1948, to the Universal Declaration of Human Rights (United Nations, 1948) and later to a series of treaties and conventions that extended the aspirational nature of the UDHR into instruments that would be binding on states under international human rights law. Among these are the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social, and Cultural Rights (ICESCR), both of which came into force in 1976.
Human rights are legal claims that persons have on governments simply on the basis of their being human. They are “what governments can do to you, cannot do to you and should do for you” (Gruskin, 2004). Even though people hold their human rights throughout their lives, they are nonetheless often constrained in their ability to fully realize them. Those who are most vulnerable to violations or neglect of their rights are also often those who lack sufficient power to claim the impact of the lack of enjoyment of their rights on their well-being, including their state of personal health. Human rights are intended to be inalienable (individuals cannot lose these rights any more than they can cease being human beings); they are indivisible (individuals cannot be denied a right because it is deemed less important or nonessential); they are interdependent (all human rights are part of a complementary framework, one right impacting on and being impacted by all others) (United Nations, 1993). They bring into focus the relationship between the State—the first-line provider and protector of human rights—and individuals who hold their human rights simply for being human. In this regard, governments have three sets of obligations toward their people (Eide, 1995):
- They have the obligation to respect human rights, which requires governments to refrain from interfering directly or indirectly with the enjoyment of human rights. In practice, no health policy, practice, program, or legal measure should violate human rights. Policies should ensure the provision of health services to all population groups on the basis of equality and freedom from discrimination, paying particular attention to vulnerable and marginalized groups.
- They have the obligation to protect human rights, which requires governments to take measures that prevent non-state actors from interfering with human rights, and to provide legal means of redress that people know about and can access. This relates to such important non-state actors as private healthcare providers, pharmaceutical companies, health insurance companies and, more generally, the health-related industry, but also national and multinational enterprises whose actions can impact significantly on lifestyle, labor, and the environment such as oil and other energy-producing companies, car manufacturers, agriculture, food industry, and labor-intensive garment factories.
- They have the obligation to fulfill human rights, which requires States to adopt appropriate legislative, administrative, budgetary, judicial, promotional, and other measures toward the full realization of human rights, including putting into place appropriate health and health-related policies that ensure human rights promotion and protection. In practice, governments should be supported in their efforts to develop and apply these measures and monitor their impact, with an immediate focus on vulnerable and marginalized groups.
Government responsibility for health exists in several ways. The right to the highest attainable standard of health appears in one form or another in most international and regional human rights documents, and equally importantly, nearly every article of every document can be understood to have clear implications for health.
The Right to Health
The right to the highest attainable standard of health builds on, but is by no means limited to, Article 12 of the ICESCR (Table 3.1). Rights relating to autonomy, information, education, food and nutrition, association, equality, participation, and nondiscrimination are integral and indivisible parts of the achievement of the highest attainable standard of health, just as the enjoyment of the right-to-health is inseparable from all other rights, whether they are categorized as civil and political, economic, social, or cultural. This recognition is based on empirical observation and on a growing body of evidence that establishes the impact that lack of fulfillment of any and all of these rights has on people’s health status: Education, nondiscrimi-nation, food and nutrition epitomizing this relationship (Gruskin and Tarantola, 2001). Conversely, ill-health constrains the fulfillment of all rights as the capacity of individuals to claim and enjoy all their human rights depends on their physical, mental, and social well-being.
The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health
The steps to be taken by the States Parties to the present Covenant to achieve the full realization of this right shall include those necessary for:
From United Nations (1966a) Article 2, International Covenant on Economic, Social and Cultural Rights. United Nations General Assembly Resolution 2200A [XX1], 16/12/1966, entered into force 03/01/1976 in accordance with Art 17. New York: United Nations.
The right-to-health does not mean the right to be healthy as such, but the obligation on the part of the government to create the conditions necessary for individuals to achieve their optimal health status. In addition to the ICESCR, the right-to-health is further elaborated in CERD (Convention on the Elimination of all forms of Racial Discrimination, 1965); in CEDAW (Convention on the Elimination of all forms of Discrimination Against Women, 1979), and CRC (Convention on the Rights of the Child art 24, 1989) and in a range of regional human rights documents.
In May 2000, the United Nations Committee on Economic, Social, and Cultural Rights adopted a General Comment further clarifying the substance of government obligations relating to the right to health (UN Committee on Economic, Social and Cultural Rights, 2000). In addition to clarifying governmental responsibility for policies, programs and practices impacting the underlying conditions necessary for health, it sets out requirements related to the delivery of health services including their availability, acceptability, accessibility, and quality. It lays out directions for the practical application of Article 12 and proposes a monitoring framework. Reflecting the mounting interest in determining international policy focused on the right to health, the UN Commission on Human Rights appointed in 2002 a Special Rapporteur whose mandate concerns the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. The Special Rapporteur’s role is to undertake country visits, transmit communications to states on alleged violations of the right to health, and submit annual reports to the Commission and the UN General Assembly. Accordingly, through publication review and country visits, the Special Rapporteur has explored policies and programs related to such issues as maternal mortality, neglected medicines, and reproductive health as they connect to human rights (Hunt, 2007).
All international human rights treaties and conventions contain provisions relevant to health as defined in the preamble of the Constitution of the World Health Organization (WHO), repeated in many subsequent documents and currently adopted by the 191 WHO Member States: Health is a “state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.” The Constitution further stipulates that “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, political belief, economic or social condition.” The Constitution was adopted by the International Health Conference held in New York from 19 June to 22 July 1946, signed on 22 July 1946 by the representatives of 61 States (World Health Organization, 1946), and entered into force on 7 April 1948. Amendments adopted by the Twenty-sixth, Twenty-ninth, Thirty-ninth and Fifty-first World Health Assemblies (resolutions WHA26.37, WHA29.38, WHA39.6 and WHA51.23) came into force on 3 February 1977, 20 January 1984, 11 July 1994 and 15 September 2005, respectively, and are incorporated in the present text.
The Emergence of a New Public Health
The focus of public health from its inception in the eighteenth century through the mid-1970s remained on combating disease and some of its most blatant social, environmental, and occupational causes. The state acted as a benevolent provider of services and the source of policies, laws, regulations, and practices generally based on the disease prevention and control model emphasizing risk- and impact-reduction strategies through immunization, case finding, treatment, and changes in domestic, environmental, and occupational hygiene.
In 1978, the Alma-Ata conference solidified a new international health agenda (Litsios, 2002). The aim of achieving Health for All by the Year 2000 was put forward, and this was to be achieved through a Primary Health Care (PHC) approach. Invoking the human right to the highest attainable standard of health, the Declaration of Alma-Ata called on nations to ensure the availability of the essentials of primary health care, including education concerning health conditions and the methods for preventing and controlling them; promotion of food supply and proper nutrition; an adequate supply of safe water and basic sanitation; maternal and child health care, including family planning; immunization against major infectious diseases; prevention and control of locally endemic diseases; appropriate treatment of common disease and injuries; and provision of essential drugs (Declaration of Alma-Ata, 1978).
The 1980s also witnessed the recognition that health was not merely determined by social and economic status but was dependent on dynamic social and economic determinants that could be acted upon through policy and structural changes. In 1986, the Ottawa Charter on Health Promotion helped sharpen the vision of the relationships between individual and collective health and its social, economic, and other determinants (Ottawa Charter for Health Promotion, 1986). The Charter spelled out the fundamental conditions and resources for health as peace, shelter, education, food, income, a stable ecosystem, sustainable resources, social justice, and equity. All of these prerequisites could have been framed as human rights. Probably to stay clear from political controversy that could have been divisive and best been addressed in a United Nations forum, however, the Charter did not explicitly bring human rights or state obligations into play.
The late 1980s and the 1990s saw growing attention being directed in the policy discourse to human rights and to their particular implications for health, and this resulted from several factors. First, the ICCPR and IESCR entered into force in 1976, and in the 1980s the UN Committees responsible for the monitoring of their implementation had begun to decipher their actual meaning and core contents, making the obligations of governments explicit and measurable. Second, the decay of the world geo-political block ideologies of the late 1980s and the advent of economic neoliberalism created a space for alternate paradigms to help shape public policy and international relations. Human rights entered the scene of geopolitical reconstruction and became common parley after the Glasnost and the fall of the Berlin Wall, in 1989, regardless of whether in reality they were used or abused by new political leaders. Third, the connection between human rights and health was increasingly being shaped around focal causes in various social and political movements. This resulted in the creation of NGOs, some of which engaged in human rights work (responding to torture in particular), others in advocacy around reproductive health and rights issues, while others provided health assistance in armed conflicts and natural disasters, all with the intent of positively impacting on policy and practice. Fourth, and particularly important for the ways this contributed to the integration of human rights concepts into health policy, the emergence of AIDS in 1981, and the recognition of HIV as a global pandemic, resulted in a variety of human rights violations by those seeking to address this mounting public health problem. As traditional disease control policies that had marked the earlier history of public health were put in place by state authorities, with a few exceptions, community-based and advocacy organizations, supported by academic groups, voiced the necessity for policies that afforded greater protections for the rights of people living with or vulnerable to HIV.
Until this time, the focus of public health had generally been to promote the collective physical, mental, and social well-being of people, even if in order to achieve public health goals, policies had to be implemented that sacrificed individual choice, behavior, and action for the common good. This was, and continues to be, exemplified by the principles and practices that guide the control of such communicable diseases as tuberculosis, typhoid, or sexually transmitted infections, where quarantine or other restrictions of rights are imposed on affected individuals. In a number of instances, in particular where health policy addressed communicable diseases and mental illness, restrictions of such rights as privacy, free movement, autonomy, or bodily integrity have been imposed by public health authorities with the commendable intention to protect public health even without valid evidence of their intended public health benefit. The current resurgence of this issue in the context of systematic testing for HIV in health facilities or within entire populations, advocated by some in order to enhance the early access to care and treatment by people found infected, illustrates that disease control methods blind to human rights have by no means vanished. Insufficient attention has been devoted to assessing and monitoring the impact of such policies on the life of people whose rights were being restricted or denied, and to the negative consequences such impositions can have on their willingness to participate supportively in public health efforts that concern them. Public health abuses have also been exemplified by policies which result in the excessive institutionalization of people with physical or mental impairments where alternate care and support approaches have not been adequately considered. In the fields of disability and in mental health, in a number of countries national policies have been found to be discriminatory and, in the case of mental health, at times when carried out in practice to amount to inhuman and degrading treatment. And far from uncommon was— and remains—something often invisible to policy but invidious if not adequately addressed, discrimination in the health-care setting on the basis of health status, gender, race, color, language, religion, or social origin, or any other attribute that can influence the quality of services provided to individuals by or on behalf of the State.
HIV and Genesis of the Integration of Human Rights into Health Practice
Cognizant of the need to engage HIV-affected communities in the response to the fast-spreading epidemics in order to achieve their public health goals, human rights were understood as valuable by policy makers not for their moral or legal value but to open access to prevention and care for those who needed these services most, away from fear, discrimination and other forms of human rights violations, and as a way to ensure communities that needed to be reached did not go underground. The deprivation of such entitlements as access to health and social services, employment, or housing imposed on people living with HIV was understood to constrain their capacity to become active subjects rather than the objects of HIV programs, and this was recognized as unsound from a public health perspective.