HIV continues to spread throughout the world, shadowed by increasing challenges to human rights, at both national and global levels. The virus continues to be marked by discrimination against population groups: those who live on the fringes of society or who are assumed to be at risk of infection because of behaviors, race, ethnicity, sexual orientation, gender, or social characteristics that are stigmatized in a particular society. In most of the world, discrimination also jeopardizes equitable distribution of access to HIV-related goods for prevention and care, including drugs necessary for HIV/AIDS care and the development of vaccines to respond to the specific needs of all populations, in both the North and South. As the number of people living with HIV and with AIDS continues to grow in nations with different economies, social structures, and legal systems, HIV/AIDS-related human rights issues are not only becoming more apparent, but also becoming increasingly diverse.
This chapter begins by examining the focus during the 1980s on the human rights of people living with HIV/AIDS, which shaped the initial understanding of the AIDS and human rights relationship. It analyzes how this focus led to recognition of the applicability of international law to HIV/AIDS and from there to increased understanding of the importance of human rights as a factor in determining people's vulnerability to HIV infection. The chapter then outlines a framework for analyzing human rights and HIV/AIDS, centered on the concept of vulnerability. The final section focuses on the specific human rights responsibilities of governments in the context of HIV/AIDS and includes a framework for monitoring government action.
Recognition of the Relationship Between Human Rights and HIV/AIDS transparent image
In the 1980s, the relationship between HIV/AIDS and human rights was only understood as it involved people infected with HIV and with AIDS and the discrimination to which they were subjected.(1) For HIV-infected people and people with AIDS, the concerns included mandatory HIV testing; restrictions on international travel; barriers to employment and housing, access to education, medical care, and/or health insurance; and the many issues raised by names reporting, partner notification, and confidentiality. These issues are grave, and almost 20 years into the epidemic, they have not been resolved. In some ways, the situation has become even more complicated, as old issues appear in new places or present themselves in new or different ways. For example, in certain settings, access to employment has continued to be routinely denied to people infected with HIV. Even in places where this situation has improved, HIV-infected individuals now run the risk of finding themselves excluded from workplace health insurance schemes, with considerable impact on their health and, therefore, on their capacity to work. There are also new issues, with tremendous human rights implications, that have been raised for HIV-infected people, in particular the large and growing disparities and inequities regarding access to antiretroviral therapies and other forms of care.(2)
The 1980s were extremely important in defining some of the connections between HIV/AIDS and human rights. By the end of the decade, the call for human rights and for compassion and solidarity with people living with HIV/AIDS had been explicitly embodied in the first WHO global response to AIDS.(3) This approach was motivated by moral outrage but also by the recognition that protection of human rights was a necessary element of a worldwide public-health response to the emerging epidemic.
The implications of this call were far-reaching. By framing this public health strategy in human rights terms, it became anchored in international law, thereby making governments and intergovernmental organizations publicly accountable for their actions toward people living with HIV/AIDS. The groundbreaking contribution of this era lies in the recognition of the applicability of international law to HIV/AIDS-and therefore to the ultimate responsibility and accountability of the state under international law for issues relating to health and well-being.(4)
What Are Human Rights?
Human rights are broadly concerned with defining the relationship between individuals and the state. International human rights law dictates that governments should not do things such as torture people, imprison them arbitrarily, or invade their privacy. Governments should, however, ensure that all people in a society have shelter, food, medical care, and basic education. The concept of human rights has a long history, but the modern human rights movement dates back about 50 years to when the promotion of human rights was set out as one of the purposes and principles of the newly created United Nations.
The key human rights document and the cornerstone of the modern human rights movement is the Universal Declaration of Human Rights (UDHR). It is a common aspirational document, by and for governments, about what rights should exist for all people everywhere. The UDHR was adopted by the U.N. General Assembly on December 10, 1948. A number of international human rights treaties exist that further elaborate the rights set out in the UDHR, including:
the International Covenant on Civil and Political Rights
the Covenant on Economic, Social, and Cultural Rights
the Convention on the Elimination of All Forms of Racial Discrimination
the Convention on the Elimination of All Forms of Discrimination Against Women
the Convention on the Rights of the Child
Each of these documents lays out legally binding obligations for the governments that sign on to them. Countries that become party to international human rights treaties accept certain procedures and responsibilities, including periodic submission of reports on their compliance with the substantive provisions of the texts to international monitoring bodies.
Health and government responsibility for health in the context of the HIV/AIDS epidemics is codified in these documents in several ways. In almost all of them, the right to the highest attainable standard of physical and mental health appears in some form. Even more importantly, nearly every article of every document has clear implications for health and for HIV/AIDS. Everything from the rights to information and association to the rights to social security or to the benefits of scientific progress and its applications has clear implications for HIV/AIDS and for the work of public health.
Conceptual Framework: Interaction between HIV/AIDS and Human Rights
The strong focus in the 1980s on the human rights of people living with HIV/AIDS also helped lead to increased understanding in the 1990s of the importance of human rights as a factor in determining people's vulnerability to HIV infection and their consequent risk of acquiring HIV infection as well the probability of their accessing appropriate care and support.(5) The interaction between HIV/AIDS and human rights is most often illustrated through the impact on the lives of individuals of neglect, denial, and violation of their rights in the context of the HIV/AIDS epidemic. This applies, albeit in different ways, to women, men, and children infected with, affected by, and vulnerable to HIV.
People infected with HIV may suffer from violations of their rights when, for example, they face government-condoned marginalization and discrimination in relation to access to health, education, and social services.(6) In this context, the realization of rights by people living with HIV would require nondiscriminatory access within a supportive social environment.
People are affected by HIV/AIDS when their close or extended families, their communities and, more broadly, the structures and services that exist for their benefit are strained by the consequences of the pandemic and as a result fail to provide them with the support and services they need. These effects of the HIV epidemic on people's lives may be compounded by marginalization and stigmatization on the basis of such attributes as race, migrant status, behaviors, or kinship that may be perceived as risk factors for HIV infection. Neglect or violation of the rights of people affected by HIV may include restricted or denied access to health services, education, and social programs.(7) People affected by HIV may progress toward the realization of their rights and better health if the enabling conditions exist to alleviate the impacts of personal, societal, and programmatic issues on their lives. This requires policies and programs designed to extend support and services to affected families and communities. Children orphaned by HIV/AIDS illustrate this need.
Vulnerability to HIV is the lack of power of individuals and communities to minimize or modulate their risk of exposure to HIV infection and, once infected, to receive adequate care and support. Even in populations where HIV has not spread widely, some individuals may be more vulnerable than others with regard to HIV. For example, gender and/or economic inequality may force a monogamous woman to engage in unprotected sex with her spouse, even if he is engaging in sex with others. Adolescent girls and boys may be vulnerable to HIV by being denied access to preventive information, education, and services. A truck driver's vulnerability to HIV may be exacerbated by peer pressure to engage in multiple unprotected sexual encounters. Sex workers may have greater vulnerability to HIV if they cannot access services to prevent, diagnose, and treat sexually transmitted infections, particularly if they are afraid to come forward because of the stigma associated with their occupation. Vulnerability is heightened by the denial of such rights as the rights to information, education, association, or essential care. To reduce vulnerability requires actions that enable individuals and communities to make and effectuate choices in their lives and thereby effectively modulate the health risks to which they may be exposed.
The effects of discrimination--particularly in the forms of racism, gender-based discrimination, and homophobia--continue to exacerbate the impact of the pandemic on the lives of individuals and populations around the world. It is increasingly recognized that realization of human rights is critical to protecting the rights and dignity of those infected and affected by HIV/AIDS, and to decreasing the relative vulnerability of individuals and communities.
Government Responsibilities for Human Rights in the Context of HIV/AIDS
As discussed above, with the applicability of international law to HIV/AIDS, governments are publicly accountable for their actions toward people in the context of HIV/AIDS. Given the reality of violations that continue to occur, it is useful to consider the specific human rights responsibilities of governments. Governments are responsible for not violating rights directly, as well as for ensuring the conditions that enable people to realize their rights as fully as possible. It is understood that, for every human right, governments have responsibilities at three levels:
they must respect the right
they must protect the right
they must fulfill the right(8)
As an illustration, consider governmental obligations in the context of HIV, using one right--the right to education:
Respecting the right means that states cannot violate the right directly. This means that the right to education is violated if children are barred from attending school on the basis of their HIV status.
This chapter begins by examining the focus during the 1980s on the human rights of people living with HIV/AIDS, which shaped the initial understanding of the AIDS and human rights relationship. It analyzes how this focus led to recognition of the applicability of international law to HIV/AIDS and from there to increased understanding of the importance of human rights as a factor in determining people's vulnerability to HIV infection. The chapter then outlines a framework for analyzing human rights and HIV/AIDS, centered on the concept of vulnerability. The final section focuses on the specific human rights responsibilities of governments in the context of HIV/AIDS and includes a framework for monitoring government action.
Recognition of the Relationship Between Human Rights and HIV/AIDS transparent image
In the 1980s, the relationship between HIV/AIDS and human rights was only understood as it involved people infected with HIV and with AIDS and the discrimination to which they were subjected.(1) For HIV-infected people and people with AIDS, the concerns included mandatory HIV testing; restrictions on international travel; barriers to employment and housing, access to education, medical care, and/or health insurance; and the many issues raised by names reporting, partner notification, and confidentiality. These issues are grave, and almost 20 years into the epidemic, they have not been resolved. In some ways, the situation has become even more complicated, as old issues appear in new places or present themselves in new or different ways. For example, in certain settings, access to employment has continued to be routinely denied to people infected with HIV. Even in places where this situation has improved, HIV-infected individuals now run the risk of finding themselves excluded from workplace health insurance schemes, with considerable impact on their health and, therefore, on their capacity to work. There are also new issues, with tremendous human rights implications, that have been raised for HIV-infected people, in particular the large and growing disparities and inequities regarding access to antiretroviral therapies and other forms of care.(2)
The 1980s were extremely important in defining some of the connections between HIV/AIDS and human rights. By the end of the decade, the call for human rights and for compassion and solidarity with people living with HIV/AIDS had been explicitly embodied in the first WHO global response to AIDS.(3) This approach was motivated by moral outrage but also by the recognition that protection of human rights was a necessary element of a worldwide public-health response to the emerging epidemic.
The implications of this call were far-reaching. By framing this public health strategy in human rights terms, it became anchored in international law, thereby making governments and intergovernmental organizations publicly accountable for their actions toward people living with HIV/AIDS. The groundbreaking contribution of this era lies in the recognition of the applicability of international law to HIV/AIDS-and therefore to the ultimate responsibility and accountability of the state under international law for issues relating to health and well-being.(4)
What Are Human Rights?
Human rights are broadly concerned with defining the relationship between individuals and the state. International human rights law dictates that governments should not do things such as torture people, imprison them arbitrarily, or invade their privacy. Governments should, however, ensure that all people in a society have shelter, food, medical care, and basic education. The concept of human rights has a long history, but the modern human rights movement dates back about 50 years to when the promotion of human rights was set out as one of the purposes and principles of the newly created United Nations.
The key human rights document and the cornerstone of the modern human rights movement is the Universal Declaration of Human Rights (UDHR). It is a common aspirational document, by and for governments, about what rights should exist for all people everywhere. The UDHR was adopted by the U.N. General Assembly on December 10, 1948. A number of international human rights treaties exist that further elaborate the rights set out in the UDHR, including:
the International Covenant on Civil and Political Rights
the Covenant on Economic, Social, and Cultural Rights
the Convention on the Elimination of All Forms of Racial Discrimination
the Convention on the Elimination of All Forms of Discrimination Against Women
the Convention on the Rights of the Child
Each of these documents lays out legally binding obligations for the governments that sign on to them. Countries that become party to international human rights treaties accept certain procedures and responsibilities, including periodic submission of reports on their compliance with the substantive provisions of the texts to international monitoring bodies.
Health and government responsibility for health in the context of the HIV/AIDS epidemics is codified in these documents in several ways. In almost all of them, the right to the highest attainable standard of physical and mental health appears in some form. Even more importantly, nearly every article of every document has clear implications for health and for HIV/AIDS. Everything from the rights to information and association to the rights to social security or to the benefits of scientific progress and its applications has clear implications for HIV/AIDS and for the work of public health.
Conceptual Framework: Interaction between HIV/AIDS and Human Rights
The strong focus in the 1980s on the human rights of people living with HIV/AIDS also helped lead to increased understanding in the 1990s of the importance of human rights as a factor in determining people's vulnerability to HIV infection and their consequent risk of acquiring HIV infection as well the probability of their accessing appropriate care and support.(5) The interaction between HIV/AIDS and human rights is most often illustrated through the impact on the lives of individuals of neglect, denial, and violation of their rights in the context of the HIV/AIDS epidemic. This applies, albeit in different ways, to women, men, and children infected with, affected by, and vulnerable to HIV.
People infected with HIV may suffer from violations of their rights when, for example, they face government-condoned marginalization and discrimination in relation to access to health, education, and social services.(6) In this context, the realization of rights by people living with HIV would require nondiscriminatory access within a supportive social environment.
People are affected by HIV/AIDS when their close or extended families, their communities and, more broadly, the structures and services that exist for their benefit are strained by the consequences of the pandemic and as a result fail to provide them with the support and services they need. These effects of the HIV epidemic on people's lives may be compounded by marginalization and stigmatization on the basis of such attributes as race, migrant status, behaviors, or kinship that may be perceived as risk factors for HIV infection. Neglect or violation of the rights of people affected by HIV may include restricted or denied access to health services, education, and social programs.(7) People affected by HIV may progress toward the realization of their rights and better health if the enabling conditions exist to alleviate the impacts of personal, societal, and programmatic issues on their lives. This requires policies and programs designed to extend support and services to affected families and communities. Children orphaned by HIV/AIDS illustrate this need.
Vulnerability to HIV is the lack of power of individuals and communities to minimize or modulate their risk of exposure to HIV infection and, once infected, to receive adequate care and support. Even in populations where HIV has not spread widely, some individuals may be more vulnerable than others with regard to HIV. For example, gender and/or economic inequality may force a monogamous woman to engage in unprotected sex with her spouse, even if he is engaging in sex with others. Adolescent girls and boys may be vulnerable to HIV by being denied access to preventive information, education, and services. A truck driver's vulnerability to HIV may be exacerbated by peer pressure to engage in multiple unprotected sexual encounters. Sex workers may have greater vulnerability to HIV if they cannot access services to prevent, diagnose, and treat sexually transmitted infections, particularly if they are afraid to come forward because of the stigma associated with their occupation. Vulnerability is heightened by the denial of such rights as the rights to information, education, association, or essential care. To reduce vulnerability requires actions that enable individuals and communities to make and effectuate choices in their lives and thereby effectively modulate the health risks to which they may be exposed.
The effects of discrimination--particularly in the forms of racism, gender-based discrimination, and homophobia--continue to exacerbate the impact of the pandemic on the lives of individuals and populations around the world. It is increasingly recognized that realization of human rights is critical to protecting the rights and dignity of those infected and affected by HIV/AIDS, and to decreasing the relative vulnerability of individuals and communities.
Government Responsibilities for Human Rights in the Context of HIV/AIDS
As discussed above, with the applicability of international law to HIV/AIDS, governments are publicly accountable for their actions toward people in the context of HIV/AIDS. Given the reality of violations that continue to occur, it is useful to consider the specific human rights responsibilities of governments. Governments are responsible for not violating rights directly, as well as for ensuring the conditions that enable people to realize their rights as fully as possible. It is understood that, for every human right, governments have responsibilities at three levels:
they must respect the right
they must protect the right
they must fulfill the right(8)
As an illustration, consider governmental obligations in the context of HIV, using one right--the right to education:
Respecting the right means that states cannot violate the right directly. This means that the right to education is violated if children are barred from attending school on the basis of their HIV status.
Protecting the right means a state has to prevent violations of rights by nonstate actors and offer some sort of redress that people know about and have access to if a violation does occur. A state has to ensure, for example, that religious groups are not successful when they try to stop adolescents from accessing reproductive health education.
Fulfilling the right means states have to take all appropriate measures-legislative, administrative, budgetary, judicial, and otherwise-toward fulfilling the right. If a state fails to provide essential HIV/AIDS prevention education in enough languages and media to be accessible to everyone in the population, this in and of itself could be understood to be a violation of the right to education.
In most countries, resource and other constraints can render it impossible for a government to fulfill all rights immediately and completely. The mechanisms responsible for monitoring governmental compliance with human rights obligations recognize that, in practical terms, a commitment to the right to basic education will require more than just passing a law. It will require financial resources, trained personnel, facilities, textbooks, and a sustainable infrastructure. Therefore, realization of rights is generally understood as making steady progress toward a goal. This principle of "progressive realization" is fundamental to the achievement of human rights. It is critical for resource-poor countries, which are responsible for striving toward human rights goals to the maximum extent possible; however, it is also important because it imposes an obligation on wealthier countries to engage in international assistance and cooperation.(9) In addition, as member states of intergovernmental and multilateral institutions, governments can be challenged to account for the impact of the actions of these institutions on health and development.
Despite the importance attached to human rights, there are situations where it is considered legitimate to restrict rights to achieve a broader public good. As described in the International Covenant on Civil and Political Rights, the public good can take precedence to "secure due recognition and respect for the rights and freedoms of others; meet the just requirements of morality, public order, and the general welfare; and in times of emergency, when there are threats to the vital interests of the nation."(10)
Public health is one such recognized public good.(11) Traditional public health measures have generally focused on curbing the spread of disease by imposing restrictions on the rights of those already infected or considered most vulnerable to becoming infected. Coercion, compulsion, and restriction have historically been significant components of public health measures.(12) Although the restrictions on rights that have occurred in the context of public health have generally had as their first concern protection of the public's health, the measures taken have often been excessive. Interference with freedom of movement when instituting quarantine or isolation for a serious communicable disease--for example, Ebola fever, syphilis, typhoid, or untreated tuberculosis--is an example of a restriction on rights that may in some circumstances be necessary for the public good and therefore could be considered legitimate under international human rights law. However, arbitrary measures taken by public health authorities that fail to consider other valid alternatives may be abusive of both human rights principles and public health "best practice." There are countless examples from around the world of this sort of abuse in the context of HIV/AIDS.(13)
Certain rights are absolute, which means that restrictions may never be placed on them, even if justified as necessary for the public good. These include such rights as the right to be free from torture, slavery, or servitude; the right to a fair trial; and the right to freedom of thought.(14) Interference with most rights can be legitimately justified as necessary under narrowly defined circumstances.(15) Limitations on rights, however, are considered a serious issue under international human rights law, regardless of the apparent importance of the public good involved. When a government limits the exercise or enjoyment of a right, this action must be taken only as a last resort and will only be considered legitimate if the following criteria are met:
The restriction is provided for and carried out in accordance with the law.
The restriction is in the interest of a legitimate objective of general interest.
The restriction is strictly necessary in a democratic society to achieve the objective.
There are no less intrusive and restrictive means available to reach the same goal.
The restriction is not imposed arbitrarily, ie, in an unreasonable or otherwise discriminatory manner.(16)
Whereas this approach has long been recognized by those concerned with human rights monitoring and implementation as relevant to analyzing a government's actions, it has also recently begun to be considered a useful tool in a number of places by those responsible within government for HIV/AIDS-related policies and programs.(17)
HIV/AIDS, Public Health, and Human Rights in Practice
Using human rights concepts, one can examine the extent to which governments are progressively respecting, protecting, and fulfilling their obligations for all rights-civil, political, economic, social, and cultural-and how these government actions influence patterns of infection and concomitant responses.(18) The following section presents a framework for monitoring government action.
Advocacy and Accountability
Governments are responsible for promoting and protecting both public health and human rights.(19) None of the international human rights treaties specifically mentions HIV or the rights of individuals in the context of HIV/AIDS, yet all the international human rights mechanisms responsible for monitoring government action have expressed their commitment to exploring the implications of HIV/AIDS for governmental obligations. This may be of critical importance for fusing HIV/AIDS and human rights in practical and concrete ways. For example, in the past several years, increasing attention has been paid to HIV/AIDS in government reporting regarding their human rights obligations. Of the six human rights treaty monitoring bodies, the Committee on the Rights of the Child and the Committee on the Elimination of All Forms of Discrimination Against Women have been the most active in both their questions and responses in relation to HIV/AIDS. All the human rights treaty-monitoring bodies have expressed general concern at the increasing rates of HIV infection and its impact on the lives of populations. In their interactions with some countries, these bodies have focused specifically on laws and policies that might increase rates of infection, such as the lack of health care facilities available to adolescents without parental consent. A primary focus has been the need for governments to use a human rights framework to enact strategies for HIV prevention realistically targeted to the needs of affected populations, including providing information and education, ensuring care and support for people living with HIV and with AIDS, and taking steps to reduce the social and economic consequences of the disease.
Resolutions of the U.N. Commission on Human Rights and the 1998 International Guidelines on HIV/AIDS and Human Rights also provide advocates and policymakers with useful tools for helping to ensure increased attention to both HIV/AIDS and human rights.(20) In addition, governments have made political commitments at international conferences such as the U.N. International Conference on Population and Development, held in Cairo in 1994, and the U.N. Fourth World Conference on Women, held in Beijing in 1995, stating their responsibility for ensuring the rights of individuals in the context of HIV/AIDS.(21) Although it may represent the lowest common denominator to which all countries could agree, the consensus document that was issued by the U.N. General Assembly Special Session on HIV/AIDS in June 2001 may become a critically important document for advocacy and accountability in relation to HIV/AIDS and human rights.(22) Advocates and others interested in using these three political documents for policy and programmatic purposes may find them useful complements to other more technically explicit international policy and program guidance on promoting and protecting human rights in the context of HIV/AIDS.
In most countries, resource and other constraints can render it impossible for a government to fulfill all rights immediately and completely. The mechanisms responsible for monitoring governmental compliance with human rights obligations recognize that, in practical terms, a commitment to the right to basic education will require more than just passing a law. It will require financial resources, trained personnel, facilities, textbooks, and a sustainable infrastructure. Therefore, realization of rights is generally understood as making steady progress toward a goal. This principle of "progressive realization" is fundamental to the achievement of human rights. It is critical for resource-poor countries, which are responsible for striving toward human rights goals to the maximum extent possible; however, it is also important because it imposes an obligation on wealthier countries to engage in international assistance and cooperation.(9) In addition, as member states of intergovernmental and multilateral institutions, governments can be challenged to account for the impact of the actions of these institutions on health and development.
Despite the importance attached to human rights, there are situations where it is considered legitimate to restrict rights to achieve a broader public good. As described in the International Covenant on Civil and Political Rights, the public good can take precedence to "secure due recognition and respect for the rights and freedoms of others; meet the just requirements of morality, public order, and the general welfare; and in times of emergency, when there are threats to the vital interests of the nation."(10)
Public health is one such recognized public good.(11) Traditional public health measures have generally focused on curbing the spread of disease by imposing restrictions on the rights of those already infected or considered most vulnerable to becoming infected. Coercion, compulsion, and restriction have historically been significant components of public health measures.(12) Although the restrictions on rights that have occurred in the context of public health have generally had as their first concern protection of the public's health, the measures taken have often been excessive. Interference with freedom of movement when instituting quarantine or isolation for a serious communicable disease--for example, Ebola fever, syphilis, typhoid, or untreated tuberculosis--is an example of a restriction on rights that may in some circumstances be necessary for the public good and therefore could be considered legitimate under international human rights law. However, arbitrary measures taken by public health authorities that fail to consider other valid alternatives may be abusive of both human rights principles and public health "best practice." There are countless examples from around the world of this sort of abuse in the context of HIV/AIDS.(13)
Certain rights are absolute, which means that restrictions may never be placed on them, even if justified as necessary for the public good. These include such rights as the right to be free from torture, slavery, or servitude; the right to a fair trial; and the right to freedom of thought.(14) Interference with most rights can be legitimately justified as necessary under narrowly defined circumstances.(15) Limitations on rights, however, are considered a serious issue under international human rights law, regardless of the apparent importance of the public good involved. When a government limits the exercise or enjoyment of a right, this action must be taken only as a last resort and will only be considered legitimate if the following criteria are met:
The restriction is provided for and carried out in accordance with the law.
The restriction is in the interest of a legitimate objective of general interest.
The restriction is strictly necessary in a democratic society to achieve the objective.
There are no less intrusive and restrictive means available to reach the same goal.
The restriction is not imposed arbitrarily, ie, in an unreasonable or otherwise discriminatory manner.(16)
Whereas this approach has long been recognized by those concerned with human rights monitoring and implementation as relevant to analyzing a government's actions, it has also recently begun to be considered a useful tool in a number of places by those responsible within government for HIV/AIDS-related policies and programs.(17)
HIV/AIDS, Public Health, and Human Rights in Practice
Using human rights concepts, one can examine the extent to which governments are progressively respecting, protecting, and fulfilling their obligations for all rights-civil, political, economic, social, and cultural-and how these government actions influence patterns of infection and concomitant responses.(18) The following section presents a framework for monitoring government action.
Advocacy and Accountability
Governments are responsible for promoting and protecting both public health and human rights.(19) None of the international human rights treaties specifically mentions HIV or the rights of individuals in the context of HIV/AIDS, yet all the international human rights mechanisms responsible for monitoring government action have expressed their commitment to exploring the implications of HIV/AIDS for governmental obligations. This may be of critical importance for fusing HIV/AIDS and human rights in practical and concrete ways. For example, in the past several years, increasing attention has been paid to HIV/AIDS in government reporting regarding their human rights obligations. Of the six human rights treaty monitoring bodies, the Committee on the Rights of the Child and the Committee on the Elimination of All Forms of Discrimination Against Women have been the most active in both their questions and responses in relation to HIV/AIDS. All the human rights treaty-monitoring bodies have expressed general concern at the increasing rates of HIV infection and its impact on the lives of populations. In their interactions with some countries, these bodies have focused specifically on laws and policies that might increase rates of infection, such as the lack of health care facilities available to adolescents without parental consent. A primary focus has been the need for governments to use a human rights framework to enact strategies for HIV prevention realistically targeted to the needs of affected populations, including providing information and education, ensuring care and support for people living with HIV and with AIDS, and taking steps to reduce the social and economic consequences of the disease.
Resolutions of the U.N. Commission on Human Rights and the 1998 International Guidelines on HIV/AIDS and Human Rights also provide advocates and policymakers with useful tools for helping to ensure increased attention to both HIV/AIDS and human rights.(20) In addition, governments have made political commitments at international conferences such as the U.N. International Conference on Population and Development, held in Cairo in 1994, and the U.N. Fourth World Conference on Women, held in Beijing in 1995, stating their responsibility for ensuring the rights of individuals in the context of HIV/AIDS.(21) Although it may represent the lowest common denominator to which all countries could agree, the consensus document that was issued by the U.N. General Assembly Special Session on HIV/AIDS in June 2001 may become a critically important document for advocacy and accountability in relation to HIV/AIDS and human rights.(22) Advocates and others interested in using these three political documents for policy and programmatic purposes may find them useful complements to other more technically explicit international policy and program guidance on promoting and protecting human rights in the context of HIV/AIDS.
Human Rights in HIV/AIDS Policy and Program Design
Human rights are governmental obligations toward individuals; because these obligations include the protection of public health, they are relevant to the design, implementation, and evaluation of health policies and programs.(23) Based on these obligations, governments can be understood as legally responsible for instituting policies and programs that can reduce the spread and impact of HIV/AIDS. However the respect, protection, and fulfillment of all human rights--civil, political, economic, social, and cultural--are necessary not only because they are the binding legal obligations of governments but also because they are critical to an effective response. Examining public health through a human rights lens involves looking not only at the technical and operational aspects of public health interventions but also at the civil, political, economic, social, and cultural factors that surround them. These factors may include, for example, gender relations, religious beliefs, homophobia, or racism. Individually and in synergy, these factors may influence the extent to which individuals and communities are able to access services or make and effectuate free and informed decisions about their lives--and, therefore, may influence the extent of their vulnerability to HIV/AIDS, including accessing needed care and support once infected with HIV.(24) Thus, recognizing human rights in the design, implementation, and evaluation of health policies and programs can help shape more effective action.
HIV/AIDS policies and programs can be improved by a systematic review of how and to what extent interventions are both respectful of human rights and of benefit to public health. The questions described in the box below can be used by policymakers and public health and other government officials to aid in the development, implementation, and evaluation of more effective HIV/AIDS policies and programs; they can also be used by nongovernmental organizations and other concerned actors as an advocacy tool to hold governments accountable vis-à-vis compliance with their international legal obligations to promote and protect both public health and human rights.
The following questions are intended only to serve as a starting point:(25)
- What is the specific intended purpose of the policy or program?
- What are the ways and the extent to which the policy or program may have an impact--positively and negatively--on public health?
- Using international human rights documents for guidance, what and whose rights are affected positively and negatively by the policy or the program?
- Does the policy or program necessitate the restriction of human rights?
- If so, have the criteria/preconditions been met?Are the health and other relevant structures and services capable of effectively implementing the policy or program?
- What steps are being taken to progress toward the optimal synergy between the promotion and protection of health and rights in relation to the issue?
- What system of monitoring, evaluation, accountability, and redress exists to ensure that the policy or program is progressing toward the intended effect and that adverse effects are addressed?
A Framework for Action
An agenda for action can be created by recognizing the convergence of the three situations in which people live in a world with HIV/AIDS--infected, affected, and vulnerable--and the three levels of government obligations that exist for every right-respect, protect, and fulfill. This approach has the power to bring about the incorporation of human rights promotion and protection into the diversity of responses designed to control the pandemic and mitigate its impact. Table 1 summarizes the three situations and three levels of obligation that should be considered by governments and other actors when identifying the specific needs and related rights of individuals in the context of HIV/AIDS.
ConclusionPeople living with HIV/AIDS, their friends and relatives, their communities, national and international policy- and decisionmakers, health professionals, and the public at large all, to varying degrees, understand the fundamental linkages between HIV/AIDS and human rights. The importance of bringing HIV/AIDS policies and programs in line with international human rights law is generally acknowledged but, unfortunately, rarely carried out in reality. Policymakers, program managers, and service providers must become more comfortable using human rights norms and standards to guide and limit the actions taken by or on behalf of governments in all matters affecting the response to HIV/AIDS. This requires genuine attention to building their capacity to recognize and promote the synergy between health and human rights and to appreciate more fully the potential gains when health interventions are guided by human rights principles. Those involved in HIV/AIDS advocacy must become more familiar with the practicalities of genuinely using international human rights law when they strive to hold governments accountable. For human rights to remain relevant to legal and policy work in HIV/AIDS, the contact between the conceptual work being done on the linkage between HIV/AIDS and human rights and the realities faced by those working in advocacy and in policy and program design must be ongoing; it is the mutually supportive--although occasionally mutually challenging--interaction between these groups that will help keep this work vital and useful.
Finally, concern with the events of September 11, 2001, and its aftermath has begun to threaten recent commitments to HIV/AIDS by the U.S. government and other donor countries. It is critical that these crises not be pitted against one another in the context of public opinion and discourse, political and legal commitments, or the allocation of financial and technical resources. To control the HIV/AIDS pandemic and mitigate its impact require action not only within a country's own borders but also in line with international human rights obligations through its engagement in international assistance and cooperation. Sustained commitment is critical to the future of the HIV/AIDS epidemics in the United States and around the world.
An agenda for action can be created by recognizing the convergence of the three situations in which people live in a world with HIV/AIDS--infected, affected, and vulnerable--and the three levels of government obligations that exist for every right-respect, protect, and fulfill. This approach has the power to bring about the incorporation of human rights promotion and protection into the diversity of responses designed to control the pandemic and mitigate its impact. Table 1 summarizes the three situations and three levels of obligation that should be considered by governments and other actors when identifying the specific needs and related rights of individuals in the context of HIV/AIDS.
ConclusionPeople living with HIV/AIDS, their friends and relatives, their communities, national and international policy- and decisionmakers, health professionals, and the public at large all, to varying degrees, understand the fundamental linkages between HIV/AIDS and human rights. The importance of bringing HIV/AIDS policies and programs in line with international human rights law is generally acknowledged but, unfortunately, rarely carried out in reality. Policymakers, program managers, and service providers must become more comfortable using human rights norms and standards to guide and limit the actions taken by or on behalf of governments in all matters affecting the response to HIV/AIDS. This requires genuine attention to building their capacity to recognize and promote the synergy between health and human rights and to appreciate more fully the potential gains when health interventions are guided by human rights principles. Those involved in HIV/AIDS advocacy must become more familiar with the practicalities of genuinely using international human rights law when they strive to hold governments accountable. For human rights to remain relevant to legal and policy work in HIV/AIDS, the contact between the conceptual work being done on the linkage between HIV/AIDS and human rights and the realities faced by those working in advocacy and in policy and program design must be ongoing; it is the mutually supportive--although occasionally mutually challenging--interaction between these groups that will help keep this work vital and useful.
Finally, concern with the events of September 11, 2001, and its aftermath has begun to threaten recent commitments to HIV/AIDS by the U.S. government and other donor countries. It is critical that these crises not be pitted against one another in the context of public opinion and discourse, political and legal commitments, or the allocation of financial and technical resources. To control the HIV/AIDS pandemic and mitigate its impact require action not only within a country's own borders but also in line with international human rights obligations through its engagement in international assistance and cooperation. Sustained commitment is critical to the future of the HIV/AIDS epidemics in the United States and around the world.
References
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2. See, for example, Statement from the community AIDS movement in Africa, presented at the meeting on the international partnership against HIV/AIDS in Africa, New York, UN Headquarters, December 6-7, 1999.
3. World Health Organization, World Health Assembly, Resolution WHA 40.26, Global Strategy for the Prevention and Control of AIDS, Geneva, WHO, 5 May 1987.
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1. World Health Organization, World Health Assembly, Avoidance of Discrimination Against HIV-Infected Persons and Persons with AIDS, preamble, resolution WHA41.24 (May 13, 1988).
2. See, for example, Statement from the community AIDS movement in Africa, presented at the meeting on the international partnership against HIV/AIDS in Africa, New York, UN Headquarters, December 6-7, 1999.
3. World Health Organization, World Health Assembly, Resolution WHA 40.26, Global Strategy for the Prevention and Control of AIDS, Geneva, WHO, 5 May 1987.
4. Mann J, Gostin L, Gruskin S, et al. Health and human rights. Health and Human Rights 1994;1(1):6-23.
5. D Tarantola. Risk and vulnerability reduction in the HIV/AIDS pandemic. Current Issues in Public Health 1995;1:176-9; S Gruskin, D Tarantola. HIV/AIDS, Health and Human Rights. In: P Lamptey, H Gayle, P Mane, (eds). HIV/AIDS Prevention and Care Programs in Resource-Constrained Settings: A Handbook for the Design and Management of Programs. Arlington, Virginia: Family Health International, 2000.
6. Human Rights Internet. Human rights and HIV/AIDS: effective community responses. Ottawa: International Human Rights Documentation Network, 1998. R Cohen, L Wiseberg. Double jeopardy-threat to life and human rights: discrimination against persons with AIDS. Cambridge, MA: Human Rights Internet, 1990.
7. S Gruskin, A Wakhweya. A human rights perspective on HIV/AIDS in sub-Saharan Africa. In: M Laga, K De Cock, N Kaleeba, S Mboup, D Tarantola (eds). AIDS in Africa, 2nd edition. London: Rapid Science Publisher, 1997:S159-S167. S Hunter, J Williamson. Developing Strategies and Policies for Support of HIV/AIDS Infected and Affected Children. Washington: USAID, 1997.
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9. International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200 (XXI), U.N. GAOR, 21st Sess., Supp. NO. 16, at 49, U.N. Doc. A/6316 (1966), Article 2.
10. United Nations International Covenant on Civil and Political Rights (ICCPR), G.A. Res. 2200 (XXI), UN GAOR, 21st Sess., Supp. No. 16, at 49, UN Doc. A/6316 (1966).
11. The specific power of the state to restrict right in the state of public health can be understood to be derived from Article 12 (c) of the ICESCR, which gives governments the right to take the steps they deem necessary for the 'prevention, treatment and control of epidemic, endemic, occupational and other diseases.'
12. See, for example, Smith, S. (1911). The powers and duties of the board of health. Social Diseases, 2(3), 9; Schmidt, T.A. (1995). When public health competes with individual needs. Academy of Emergency Medicine, 2, 217-22; Cohen, M.L. (1998). Resurgent and emergent disease in a changing world. British Medical Bulletin, 54(3), 523-32.
13. See, for example, Cohen, R., Wiseberg, L. (1990). Double jeopardy-threat to life and human rights: discrimination against persons with AIDS. Human Rights Internet, Cambridge, MA; United Nations (1992a). Commission on Human Rights, Sub-Commission on Prevention and Discrimination and Protection of Minorities. Discrimination against HIV-infected people or people with AIDS. UN Doc. E/CN.4/Sub.2/1992/10 (July 28, 1992); United Nations (1994). Committee on Economic, Social and Cultural Rights (UNCESCR). General Comment No. 5 (Eleventh Session). Persons with disabilities. UN Doc. E/C.12/1194/13; Human Rights Internet (1998). 'Human rights and HIV/AIDS: effective community responses.' International Human Rights Documentation Network, Ottawa.
12. See, for example, Smith, S. (1911). The powers and duties of the board of health. Social Diseases, 2(3), 9; Schmidt, T.A. (1995). When public health competes with individual needs. Academy of Emergency Medicine, 2, 217-22; Cohen, M.L. (1998). Resurgent and emergent disease in a changing world. British Medical Bulletin, 54(3), 523-32.
13. See, for example, Cohen, R., Wiseberg, L. (1990). Double jeopardy-threat to life and human rights: discrimination against persons with AIDS. Human Rights Internet, Cambridge, MA; United Nations (1992a). Commission on Human Rights, Sub-Commission on Prevention and Discrimination and Protection of Minorities. Discrimination against HIV-infected people or people with AIDS. UN Doc. E/CN.4/Sub.2/1992/10 (July 28, 1992); United Nations (1994). Committee on Economic, Social and Cultural Rights (UNCESCR). General Comment No. 5 (Eleventh Session). Persons with disabilities. UN Doc. E/C.12/1194/13; Human Rights Internet (1998). 'Human rights and HIV/AIDS: effective community responses.' International Human Rights Documentation Network, Ottawa.
14. See, for example, Article 4 of the International Covenant on Civil and Political Rights, which states in pertinent part that 'No derogation from articles 6, 7, 8 (paragraphs 1 and 2), 11, 15, 16, 18 may be made under this provision.'
15. See, for example, Article 4 of the ICCPR, which states in pertinent part, 'In time of public emergency which threatens the life of the nation and the existence of which is officially proclaimed, the States Parties to the present Covenant may take measures derogating from their obligations under the present Covenant to the extent strictly required by the exigencies of the situation, provided that such measures are not inconsistent with their other obligations under international law and do not involve discrimination solely on the ground of race, colour, sex, language, religion or social origin.'
16. United Nations Economic and Social Council (ECOSOC) (1985). The Siracusa Principles on the limitations and derogation provisions in the international covenant on civil and political rights. UN Doc. E/CN.4/1985/4, Annex.
16. United Nations Economic and Social Council (ECOSOC) (1985). The Siracusa Principles on the limitations and derogation provisions in the international covenant on civil and political rights. UN Doc. E/CN.4/1985/4, Annex.
17. World Health Organization and the Joint United Nations Programme on AIDS (UNAIDS) (1999). Consultation on HIV/AIDS reporting and disclosure, Geneva, 20-22 October 1999.
18. S Gruskin. Human rights and public health: an overview. Canadian HIV/AIDS newsletter, 1999.
19. See, for example, World Health Assembly resolution 40.26 of 15 May 1987; General Assembly resolution 42/8 of 26 October 1987. Also see more recently World Health Assembly Resolution 54.10 of 21 May 2001, 'Scaling up the response to HIV/AIDS,' and UN Commission on Human Rights Resolutions 2001/51 of 24 April 2001; 1999/49 of 21 April 1999; 1997/33 of 11 April 1997; 1996/43 of 19 April 1996 and 1995/44 of 3 March 1995.
20. See, in particular, Office of the United Nations High Commissioner for Human Rights and the Joint United Programme on HIV/AIDS. HIV/AIDS and human rights: international guidelines. UN Doc HR/PUB/98/1 (1998).
21. Gruskin S. The highest priority: making use of UN conference documents to remind governments of their commitments. Health and Human Rights 1998;3 (1):107-142.
18. S Gruskin. Human rights and public health: an overview. Canadian HIV/AIDS newsletter, 1999.
19. See, for example, World Health Assembly resolution 40.26 of 15 May 1987; General Assembly resolution 42/8 of 26 October 1987. Also see more recently World Health Assembly Resolution 54.10 of 21 May 2001, 'Scaling up the response to HIV/AIDS,' and UN Commission on Human Rights Resolutions 2001/51 of 24 April 2001; 1999/49 of 21 April 1999; 1997/33 of 11 April 1997; 1996/43 of 19 April 1996 and 1995/44 of 3 March 1995.
20. See, in particular, Office of the United Nations High Commissioner for Human Rights and the Joint United Programme on HIV/AIDS. HIV/AIDS and human rights: international guidelines. UN Doc HR/PUB/98/1 (1998).
21. Gruskin S. The highest priority: making use of UN conference documents to remind governments of their commitments. Health and Human Rights 1998;3 (1):107-142.
22. UNAIDS, 'Declaration of Commitment on HIV/AIDS: Global Crisis - Global Action,' United Nations General Assembly Special Session on HIV/AIDS, New York, NY (2001).
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24. S Gruskin. Human rights and public health: an overview. Canadian HIV/AIDS newsletter, 1999.
25. International Federal of Red Cross and Red Crescent Societies and Francois-Xavier Bagnoud Center for Health and Human Rights. The public health-human rights dialogue. In: AIDS, Health and Human Rights: an Explanatory Manual. Boston: 1995. WHO/UNAIDS. Partner Notification and Disclosure of HIV and/or AIDS Serostatus to Others. Geneva: June 1999.
23. S Gruskin, A Hendriks, K Tomasevski. Human rights and responses to HIV/AIDS. In: J Mann, D Tarantola (eds). AIDS in the World II. London: Oxford University Press, 1996:326-340. United Nations Commission on Human Rights, Non-Discrimination in the Field of Health, preamble, Resolution 1989/11 (March 2, 1989).
24. S Gruskin. Human rights and public health: an overview. Canadian HIV/AIDS newsletter, 1999.
25. International Federal of Red Cross and Red Crescent Societies and Francois-Xavier Bagnoud Center for Health and Human Rights. The public health-human rights dialogue. In: AIDS, Health and Human Rights: an Explanatory Manual. Boston: 1995. WHO/UNAIDS. Partner Notification and Disclosure of HIV and/or AIDS Serostatus to Others. Geneva: June 1999.
