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 is often called the “International Bill of Human Rights.” The UDHR was drawn up to give more specific definition to the rights and freedoms referred to in the UN Charter. The ICCPR and the ICESCR further elaborate the content set out in the UDHR, as well as setting out the conditions in which states can permissibly restrict rights.
Although the UDHR is not a legally binding document, nations (states) have endowed it with great legitimacy through their actions, including its legal and political invocation at the national and international level. For example, portions of the UDHR are cited in numerous national constitutions, and governments often refer to the UDHR when accusing other governments of violating human rights. The Covenants are legally binding, but only on the states which have become parties to them. Parties to the Covenants accept certain procedures and responsibilities, including periodic submission of reports on their compliance with the substantive provisions of the texts.
Building upon this central core of documents, a large number of additional declarations and conventions have been adopted at the international and regional levels, focusing upon either specific populations (such as the International Convention on the Elimination of All Forms of Racial Discrimination, entry into force in 1969; the Convention on the Elimination of All Forms of Discrimination Against Women, 1981; the Convention on the Rights of the Child, 1989) or issues such as the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, entry into force in 1987; the Declaration on the Elimination of All Forms of Intolerance and of Discrimination Based on Religion or Belief, 1981.
Since 1948, the promotion and protection of human rights have received increased attention from communities and nations around the world. While there are few legal sanctions to compel states to meet their human rights obligations, states are increasingly monitored for their compliance with human rights norms by other states, nongovernmental organizations, the media and private individuals. The growing legitimacy of the human rights framework lies in the increasing application of human rights standards by a steadily widening range of actors in the world community. The awarding of the Nobel Peace Prize for human rights work to Amnesty International and to Ms. Rigoberta Menchu symbolizes this extraordinary level of contemporary interest and concern with human rights.
Since the late 1940s, human rights advocacy and related challenges have gradually extended the boundaries of the human rights movement in four related ways. First, the initial advocacy focus on civil and political rights and certain economic and social rights is expanding to include concerns about the environment and global socioeconomic development. For example, although the right to a “social and international order in which (human rights) can be fully realized” (UDHR, Article 28) invokes broad political issues at the global level, attention to this core concept as a right has only grown in recent years.
Second, while the grounding of human rights thinking and practice in law (at national and international levels) remains fundamental, wider social involvement and participation in human rights struggles is increasingly broadening the language and uses of human rights concepts.
Third, while human rights law primarily focuses on the relationship between individuals and states, awareness is increasing that other societal institutions and systems, such as transnational business, may strongly influence the capacity for realization of rights, yet they may elude state control. For example, exploitation of natural resources by business interests may seriously harm rights of local residents, yet the governmental capacity to protect human rights may be extremely limited, or at best indirect, through regulation of business practices and laws which offer the opportunity for redress. In addition, certain individual acts, such as rape, have not been a traditional concern of human rights law, except when resulting from systematic state policy (as alleged in Bosnia). However, it is increasingly evident that state policies impacting on the status and role of women may contribute importantly, even if indirectly, to a societal context which increases women’s vulnerability to rape, even though the actual act may be individual, not state-sponsored.
Finally, the twin challenges of human rights promotion (hopefully preventing rights violations; analogous to health promotion to prevent disease) and protection (emphasizing accountability and redress for violations; analogous to medical care once disease has occurred) have often been approached separately. Initially, the United Nations system highlighted promotion of rights, and the nongovernmental human rights movement tended to stress protection of rights, often in response to horrific and systematic rights violations. More recently, both intergovernmental and nongovernmental agencies have recognized and responded to the fundamental interdependence of rights promotion and protection.
In summary, despite tremendous controversy, especially regarding the philosophical and cultural context of human rights as currently defined, a vocabulary and set of human rights norms is increasingly becoming part of community, national and global life.
A Provisional Framework: Linkages between Health and Human Rights
The goal of linking health and human rights is to contribute to advancing human well-being beyond what could be achieved through an isolated health- or human rights-based approach. This chapter proposes a three-part framework for considering linkages between health and human rights; all are interconnected, and each has substantial practical consequences. The first two are already well documented, although requiring further elaboration, while the third represents a central hypothesis calling for substantial additional analysis and exploration.
First, the impact (positive and negative) of health policies, programs and practices on human rights will be considered. This linkage will be illustrated by focusing on the use of state power in the context of public health.
The second relationship is based on the understanding that human rights violations have health impacts. It is proposed that all rights violations, particularly when severe, widespread and sustained, engender important health effects, which must be recognized and assessed. This process engages health expertise and methodologies in helping to understand how well-being is affected by violations of human rights.
The third part of this framework is based on an overarching proposition: that promotion and protection of human rights and promotion and protection of health are fundamentally linked. Even more than the first two proposed relationships, this intrinsic linkage has strategic implications and potentially dramatic practical consequences for work in each domain.
Around the world, health care is provided through many diverse public and private mechanisms. However, the responsibilities of public health are carried out in large measure through policies and programs promulgated, implemented and enforced by, or with support from, the state. Therefore, this first linkage may be best explored by considering the impact of public health policies, programs and practices on human rights.
The three central functions of public health include: assessing health needs and problems; developing policies designed to address priority health issues; and assuring programs to implement strategic health goals.14 Potential benefits to and burdens on human rights may occur in the pursuit of each of these major areas of public health responsibility.
For example, assessment involves collection of data on important health problems in a population. However, data are not collected on all possible health problems, nor does the selection of which issues to assess occur in a societal vacuum. Thus, a state’s failure to recognize or acknowledge health problems that preferentially affect a marginalized or stigmatized group may violate the right to non-discrimination by leading to neglect of necessary services, and in so doing, may adversely affect the realization of other rights, including the right to “security in the event of … sickness (or) disability …”, or to the “special care and assistance” to which mothers and children are entitled (UDHR, Article 25).
Once decisions about which problems to assess have been made, the methodology of data collection may create additional human rights burdens. Collecting information from individuals, such as whether they are infected with the human immunodeficiency virus (HIV), have breast cancer, or are genetically predisposed to heart disease, can clearly burden rights to security of person (associated with the concept of informed consent) and of arbitrary interference with privacy. In addition, the right of nondiscrimination may be threatened even by an apparently simple information-gathering exercise. For example, a health survey conducted via telephone, by excluding households without telephones (usually associated with lower socioeconomic status), may result in a biased assessment, which may in turn lead to policies or programs that fail to recognize or meet needs of the entire population. Also, personal health status or health behavior information (such as sexual orientation, or history of drug use) has the potential for misuse by the state, whether directly or if it is made available to others, resulting in grievous harm to individuals and violations of many rights. Thus, misuse of information about HIV infection status has led to: restrictions of the right to work and to education; violations of the right to marry and found a family; attacks upon honor and reputation; limitations of freedom of movement; arbitrary detention or exile; and even cruel, inhuman or degrading treatment.
The second major task of public health is to develop policies to prevent and control priority health problems. Important burdens on human rights may arise in the policy-development process. For example, if a government refuses to disclose the scientific basis of health policy or permit debate on its merits, or in other ways refuses to inform and involve the public in policy development, the rights to “seek, receive and impart information and ideas … regardless of frontiers” (UDHR, Article 19) and “to take part in the government … directly or through freely chosen representatives” (UDHR, Article 21) may be violated. Then, prioritization of health issues may result in discrimination against individuals, as when the major health problems of a population defined on the basis of sex, race, religion or language are systematically given lower priority (e.g., sickle cell disease in the United States, which affects primarily the African-American population; or more globally, maternal mortality, breast cancer and other health problems of women).
The third core function of public health, to assure services capable of realizing policy goals, is also closely linked with the right to non-discrimination. When health and social services do not take logistic, financial, and socio-cultural barriers to their access and enjoyment into account, intentional or unintentional discrimination may readily occur. For example, in clinics for maternal and child health, details such as hours of service, accessibility via public transportation and availability of daycare may strongly and adversely influence service utilization.15