IV. Human Rights and HIV Counseling and Testing

Experts estimate that fewer than two in ten people in sub-Saharan Africa know their HIV status.[9]Even fewer know the HIV status of their partner. Not knowing your–or your partners'–HIV status can have devastating consequences. It puts millions of people who have HIV at risk of premature death by delaying initiation of treatment and unknowingly exposing others to the virus. Those who are found to be HIV negative need the knowledge to continue to protect themselves against HIV infection. Ignorance of HIV status is particularly problematic for sero-discordant couples-people in relationships where one person is HIV-infected while the other is not-where, according to some studies, a significant percentage of new infections in sub Saharan Africa occurs.[10]

There is broad international consensus that HIV testing must be expanded urgently so that more people can protect their health, but the question of how to do this has been the subject of heated debate.[11]Some have argued for introducing mandatory testing;[12] others have advocated for routine offer of HIV tests to patients at healthcare facilities;[13] yet others have called for dramatic expansion of traditional voluntary counseling and testing (VCT) services or massive community based testing campaigns. Some have called for comprehensive programs that scale up both healthcare and community-based testing, allowing individuals a choice of venue.[14]

In these debates, the role of human rights has sometimes been challenged. Since the 1980s, human rights principles such as informed consent, counseling-providing people with information that allows them to make informed decisions about their health and medical treatment, and confidentiality, have played an important role in the response to HIV and AIDS. Because HIV/AIDS disproportionately affected populations who were already marginalized and created deep social stigma, there was a broad consensus among public health and AIDS activists that public health approaches which did not respect rights would be counterproductive and drive people away from information, care and support, and that a rights-based approach would be more effective in achieving public health goals.

As treatment has become more available in resource-constrained settings, some medical and public health officials have argued that the scale of the epidemic in high prevalence regions such as southern and eastern Africa requires a more aggressive response, in which human rights can be suspended or restricted for the benefit of the greater good. The emphasis on informed consent and counseling, they have said, has led to "widespread avoidance of discussion of testing."[15]They have argued that a new philosophy, based on "public health and social justice," is needed to produce a "rapid and substantial effect on the African epidemic and to limit its devastation."[16]

In their calls to expand HIV testing, these officials have created a false dichotomy, pitting a "rights-based" approach against a "public health" approach. One official went so far as to claim that the "human rights/AIDS exceptionalism approach is promoting an African Holocaust"[17]and suggested that human rights advocates had a "tolerance of preventable death."[18]

Such charges are based on an inaccurate understanding of human rights as an inflexible concept that is only concerned with individual rights and not the public interest. Human rights, in fact, have at their core a commitment to finding the appropriate balance between the rights of individuals and the interests of the community. Thus, certain restrictions on individual rights, such as informed consent, may be permissible in order to meet a pressing public need. But these restrictions must contribute to meeting that need and be no more restrictive than necessary.[19]Furthermore, good public health and human rights practices generally go hand-in-hand: the right to make a decision based on informed consent is protected by human rights law, but is also crucial from a public health perspective, as it enables people to act on the knowledge they obtain through the test; confidentiality is an aspect of the right to health and privacy, but is also crucial for maintaining public trust in the healthcare system.

There has been a tendency among some public health experts, misrepresenting the role of human rights, to promote HIV testing as an autonomous human right-a "right to know" your HIV status. Such an approach focuses too narrowly on HIV testing itself. The goal of HIV testing is not just learning your status, but being able to act on that information to protect your health. A narrowly construed "right to know" your status also appears to limit the responsibility of states to providing a test and the result. Instead, a "right to know" should be seen in the context of the broader right to health, which requires states to offer comprehensive HIV-related services that include not just HIV testing but also access to prevention information and services, access to treatment, and protection against abuse based on HIV status. This is the approach that WHO and UNAIDS have taken in their guidance on provider-initiated testing and counseling in healthcare settings, but, regrettably, not in their 2002 policy brief on HIV testing and counseling.[20]

One of the new HIV counseling and testing approaches that has proliferated across sub-Saharan Africa in the last few years is large scale community-based testing. In contrast to provider-initiated testing in healthcare settings, this type of testing has received little attention or scrutiny. By bringing HIV testing into communities, these testing programs seek to reach people who are unlikely to access voluntary testing and counseling services and who are not in touch with the healthcare system. While these programs have real potential, their impact may be limited if they result in, or contribute to-intentionally or unintentionally-violations of basic human rights. To date, no international guidelines exist to help countries implement this testing model in a way that both contributes to public health goals and is respectful of human rights.

Five aspects of the HIV counseling and testing campaign are particularly important from the perspective of international human rights principles and public health norms and standards. These are: 1) informed consent and counseling; 2) confidentiality; 3) linkages between HIV testing and prevention, care and treatment services; 4) accountability mechanisms; and 5) the adequacy of the policy and legal framework for protecting the rights of people living with HIV.

The right to make decisions about your personal life and your health based on informed consent is not only a bedrock principle of medical ethics, but is also an integral part of international human rights law.[21]However, much of the debate on HIV has focused on what exactly constitutes informed consent, what medical procedures require such consent, and how explicitly that consent must be given.[22] In their guidance on provider-initiated HIV testing and counseling in healthcare settings, WHO and UNAIDS state that HIV testing must be performed with the informed consent of the individual concerned, but hold that the act of not declining a test when it is offered constitutes informed consent to the test.[23] Human Rights Watch believes that informed consent requires specific consent to an HIV test, not an absence of refusal.[24]Obtaining informed consent involves providing pre-test counseling of patients to convey information about the test and its potential benefits and risks.[25]Pre-test counseling not only allows the healthcare provider to ensure that the consent to test is informed, but also provides an opportunity to discuss sexual behavior and prevention with patients.

Confidentiality of personal-including medical-information is a fundamental principle of the human right to health and of medical ethics. Health care providers are obliged to respect the confidentiality of their patients' medical information.[26]Although some have suggested that confidentiality is an imported "western concept" that has limited the understanding of the disease and has perpetuated stigma, the confidentiality of medical information is endorsed by WHO and UNAIDS, as well as the International Guidelines on HIV/AIDS and Human Rights.[27][28] While the high prevalence of sero-discordance in couples underscores the importance of couples testing, the implementation of couples-based counseling and testing is complicated by multiple factors, including the wide variety in relationships between couples, the fact that labor migration separates couples often for extended periods of time, and the risk of post-test violence, particularly against women.[29]

As discussed above, HIV testing should not be a stand-alone intervention that is limited to notification of sero-status. Rather, HIV testing programs should be integrated into broader efforts by states to offer comprehensive HIV-related health services. Thus, states that implement mass community-based testing programs must seek to expand other health services, such as the capacity of the healthcare system to provide prevention, care and treatment, simultaneously. These states also should ensure that mechanisms are in place, which enable them to learn of potential human rights abuses and other problems with the implementation in a timely manner so that corrective action can be taken when needed.[30] Finally, they must ensure that people who test positive are protected against potential violations of their rights. WHO and UNAIDS observed in their guidance on provider-initiated testing and counseling in healthcare settings that "at the same time as provider-initiated HIV testing and counselling is implemented, equal efforts [emphasis added] must be made to ensure that a supportive social, policy and legal framework is in place to maximize positive outcomes and minimize potential harms to patients."[31] This is true also for community-based testing programs.