The global AIDS epidemic has now visibly divided into two streams. The epidemic rages in poor and vulnerable communities and countries, whilst it appears to be under control in wealthy and more powerful nations. This is also evident in the changing language we use to describe the epidemic. During 1999, terminology that was once avoided when describing AIDS started to become common parlance. The HIV epidemic in Africa was described as a "catastrophe", a "disaster" and even as a "holocaust."

In tandem with the shift in language and a realisation of the enormous dimensions of the epidemic, governments of developing countries showed signs of panic about the social and economic impact of AIDS. They demanded explanations about why HIV was spreading so fast – and why an epidemic, which is touching so many lives, is still clothed in "silence and secrecy." A call was made for greater openness about HIV infection and AIDS.

From another angle, governments in industrialised countries -- particularly the United States -- used the breakthroughs in treatment for AIDS and the wider availability of effective drugs to argue for the resumption of traditional public health measures to normalise the epidemic. In particular, the Centers for Disease Control (CDC) advised that named HIV case reporting to health authorities was now a necessity in the United States.

On both sides of the North-South divide a debate began about the benefits and limits of privacy – and the implications of the protection of patient confidentiality for human rights and public health. In India, for example, the Supreme Court ruled that the right to marry was a "suspended right" if a person has HIV. The Court found that in certain instances the duty of a health professional to respect confidentiality could be limited – and that marriage was such an instance.

In much the same vein, in April 1999, the health ministers of the Southern African Development Community (SADC) passed a resolution that resolved to "re-establish public health principles in the management and control of HIV/AIDS" and to "examine the impact of stigmatisation, discrimination and confidentiality in HIV transmission."

Linked to this, the governments of Namibia and South Africa initiated measures that, if passed by their parliaments, would have compelled health professionals to disclose the identities of people diagnosed with AIDS.

Finally, the issue of the most appropriate method of reporting cases of HIV and/or AIDS within a health service arose in both industrialised and developing countries. In the United States the CDC recommended a move towards named reporting of all cases of HIV. In several developing countries proposals were made for AIDS to be made "notifiable" -- thereby requiring anonymous case reporting by health authorities. In both cases the reasons given were the need to collect better statistics and thereby improve surveillance and HIV prevention interventions.

Partner notification (whether voluntary or compulsory) and case reporting (whether named, coded or anonymous) are forms of disclosure. They have as their common thread the assumption that improved HIV prevention (and to a lesser extent care and treatment) depends pivotally upon wider disclosure by people living with HIV: to sexual partners and to health professionals. Although these issues are linked -- particularly by their impact on privacy, human rights and stigma -- it is useful to separate them in this discussion. We must also briefly remind ourselves why privacy and individual autonomy have been considered important in the public health response to AIDS and about the purposes of case reporting.

Confidentiality, HIV prevention and human rights

Researchers have illustrated how the early years of the AIDS epidemic were characterised by governments restricting the rights to privacy of people with AIDS – ostensibly for public health reasons. By the end of the 1980s, however, people were beginning to understand that although HIV had the potential to assume epidemic proportions, traditional public health responses to epidemic control -- such as identifying all carriers of a virus or bacteria, quarantining individuals and communities -- would not work. In fact, they risked making the AIDS epidemic worse.

Several (enduring) reasons were given for this. HIV is not transmitted by casual physical contact – but primarily through unprotected sexual intercourse. No vaccine or cure for HIV can make those people who are traced and identified as being HIV positive uninfectious. In many of the worst affected countries very few people have access to HIV testing. The window period before HIV anti-bodies develop means that it would be impossible to identify accurately all people infected.

Finally, in the context of an epidemic marked from the outset by high levels of stigma and discrimination, breaches of privacy might intimidate people who felt they might be at risk from coming forward for voluntary counselling and testing. It was understood that preventing HIV depended upon persuading people to identify their own risks and to pay attention to public health messages about HIV prevention. A climate of tolerance and legal protection against discrimination was needed to convince people to change some of their most private behaviours: particularly how they had sex. A non-discriminatory and non-persecutory environment had to be established, particularly towards people whose behaviour placed them at an added risk of HIV infection and transmission – notably sex workers, injection drug users and men who have sex with men.

In the case of the HIV/AIDS epidemic, public health authorities found common purpose with human rights advocates. Since the early 1990s, guidelines on all aspects of HIV prevention, management and care have emphasised the rights of the individual to privacy (protected first and foremost by the ethical duty of a health professional to respect confidentiality) and autonomy in decision-making.

In recognition of this, many countries made confidential and anonymous HIV testing services available. People with HIV were encouraged either to disclose personally or allow health professionals to notify injecting and sexual partners. Governmental policy and practice on the surveillance of HIV infection and AIDS have been careful to do so in a way that protects privacy.

But despite the formal recognition of human rights by governments, stigma, intolerance and discrimination of people with HIV or AIDS have remained rife. This was most glaringly evident in the murder of Gugu Dlamini, a young South African activist who publicly declared her HIV status as part of a campaign aiming to promote openness. Similarly, public health measures for HIV prevention appear to have been ineffective in most developing countries. By 1999 an estimated 33.6 million people were living with HIV/AIDS.

Faced with this impasse a desire to find quick solutions, convenient explanations and shortcuts has re-emerged. Once again, people with HIV are the scapegoats. For example, the Namibian Minister of Health Libertina Amathila laid some blame for high rates of infection at the door of confidentiality, stating that: "The situation as it is now protects only the sufferers but not the community … the special confidentiality accorded afflicted people encourages them to infect others at random without being detected."

The spotlight has turned on to confidentiality which, with the flick of a tongue, can be misrepresented as secrecy. It is argued that it hinders partner notification, disclosure and surveillance. When discussing the impact of confidentiality on HIV transmission and partner notification, case reporting and disclosure, the exact meanings of these terms need to be clarified.

Confidentiality is often confused with secrecy, or with an active encouragement of people with HIV/AIDS to be "secret" about their status. Confidentiality actually refers only to the duty of a health professional to respect the privacy of the doctor-patient relationship -- except in exceptional circumstances.

Privacy is an individual right. At its core is recognition that each human being should have control over his or her own body and personality.

Partner notification is disclosing one's HIV status to another person who may have been exposed to HIV either as a result of a sexual relationship or through sharing needles. Health professionals explain to a person diagnosed with HIV the benefits of partner notification. Partner notification should be voluntary.

Case reporting involves the collection of information by health authorities about the number of cases of HIV or AIDS in order to monitor the epidemic and plan all aspects of the public health response.

The tendency to want to blame all the failures of public health strategies on confidentiality is wrong. No doubt wider partner notification and greater openness and disclosure should be encouraged and can assist HIV prevention in the new decade. These measures have failed, however, largely because governments have failed to create an environment where confidentiality is not needed as a protection against discrimination, where partner notification does not create fears of violence and recrimination and where the public health benefits of voluntary counselling and testing are underpinned by the promise of reasonable care and treatment.

According to a UNAIDS/WHO expert consultation on HIV Reporting and Disclosure of October 1999, stigma, violence against women and despair about lack of access to care and treatment are the main factors inhibiting openness and disclosure. By highlighting these points, UNAIDS/WHO hope to provide guidance to governments and communities on how to improve reporting and disclosure. Some of these points are below:

• The right to privacy and the duty of confidentiality are not in conflict with encouraging wider openness about HIV and disclosure of HIV status.
• Governments and communities have the responsibility to create an environment where wider disclosure is possible. This means mobilising resources to support initiatives that create better knowledge about HIV, as well as protecting people who disclose their HIV status from human rights violations.
• Stronger measures are needed to actively combat unfair discrimination and remove the stigma from HIV infection.
• Increasing access to voluntary HIV testing, counselling and treatment can play a major part in changing perceptions of the epidemic and facilitating openness.
• Reporting of HIV infection and AIDS can play a useful public health function, but an assessment of appropriate reporting (surveillance) systems must be based upon the existing health infrastructure, including its capacity to protect the privacy of confidential patient information.

HIV is not a "traditional" virus in that it has become enveloped in social inequalities, poverty and human prejudice. Dealing with these causes and symptoms allows no quick fixes. Understanding it and finding a "cure" may be the domain of science and medicine. Preventing its spread and managing its impact may ultimately be the responsibility of governments. But what is required is a holistic response, that mobilises capital resources, that raises knowledge and understanding, improves access to treatment and that can be sustained. Ongoing respect for human rights – particularly privacy – remains an essential component of this response.