|Opening up the HIV/AIDS Epidemic: Guidance on Encouraging Beneficial Disclosure, Ethical Partner Counselling, and Appropriate Use of HIV Case Reporting (UNAIDS, 2000, 43 p.)|
|1. Executive summary|
|3. Encouraging beneficial disclosure|
|4. Encouraging ethical partner counselling (partner notification)|
|5. Appropriate use of HIV case reporting|
|7. References and further reading (available from UNAIDS and WHO, Geneva)|
|8. Annex 1: Definitions of important terms|
|9. Annex 2: General guiding principles|
|10. Annex 3: List of Recommendations|
Recommendations regarding encouraging beneficial disclosure:
· Conduct public information campaigns and community forums aimed at promoting tolerance, compassion, understanding, and the reduction of fear, stigma and discrimination.
· Encourage participation of people living with HIV/AIDS in public information campaigns and in HIV programmes and policy formulation.
· Establish more voluntary counselling and testing services (VCT), including in rural areas and for marginalized groups.
· Support governmental agencies, NGOs and CBOs to make community-based services, including VCT, family outreach, community support, positive living, support groups, and care options more widely available.
· Encourage the media to report on HIV/AIDS in a responsible, non-discriminatory and non-sensational manner.
· Train health care workers in the management of HIV and universal precautions, in attitudes of non-discrimination, acceptance and compassion, and in the principles of confidentiality and informed consent.
· Train other professionals (social workers, police, lawyers, judges) in attitudes of non-discrimination, acceptance and compassion, and in the principles of confidentialiy and informed consent.
· Train key personnel in non-health employment settings, including human resource management in industry, in promoting non-discriminatory practices in the workplace.
· Enact or reform of laws, administrative guidelines and professional codes of conduct to prohibit discrimination and breaches of confidentiality related to HIV status.
· Create legal support services for those who have suffered discrimination based on HIV status.
Recommendations to encourage ethical partner counselling:
· Develop national policies and public health legislation on partner counselling that protect the principles of confidentiality and informed consent, and provide for the limited and clearly defined circumstances under which partner counselling may take place without consent.
· Develop public health legislation that authorises health care providers to decide, on the basis of each individual case and ethical considerations, whether to counsel partners without the consent of the source client, under certain circumstances.
· Hold consultations among health care providers, government, and affected communities about how to encourage ethical partner counselling and protect people who disclose their status through such counselling.
· Provide training and guidelines for health care providers and counsellors about how to protect confidentiality and informed consent in the context of partner counselling; how to encourage and assist voluntary partner counselling; how to make difficult ethical decisions in cases where there is refusal to counsel partners; and how to counsel partners in ways that harm is minimised and support is provided.
· Promote the establishment of professional ethical codes among health care and social service providers which require respect for confidentiality, and informed consent, in the context of partner counselling, and provide penalties for unethical conduct.
· Establish mechanisms for accountability and modes of laying complaints within health care institutions and within communities when partners are counselled unethically by health care providers and other professionals.
· Support practical legal and social measures that address the vulnerability of people, particularly that of women to stigma, physical violence, and abandonment, including projects in the community which will assist in providing treatment, care, emotional support and protection from discrimination to those involved in partner counselling.
· Promote and support community projects about the responsibility to protect oneself and others from HIV infection, particularly among men and boys.
Recommendations to encourage appropriate use of HIV case reporting:
· In resource-poor countries where access to HIV testing and effective treatment are limited and where there is insufficient infrastructure to maintain confidentiality, avoid case-based reporting of HIV and employ sentinel surveillance within the framework of second generation HIV surveillance.
· Where there is wide access to, and use of HIV tests, established surveillance systems for communicable diseases, security and confidentiality of data, and access to anti-retroviral treatment, consider the use of HIV case reporting to provide information to monitor HIV incidence and prevalence, and to increase access to treatment, patient compliance, and long-term follow-up.
· Ensure that the surveillance methodology employed does not interfere with prevention or care activities by, for example, by allowing breaches in confidentiality that would make people afraid to take advantage of voluntary counselling and HIV testing services.
· Ensure confidentiality and security of information through the development of policy; infrastructure (e.g. data-storage and transmission systems that ensure the physical security of data; electronic security of computer files); increased capacity of health professionals to receive, report, and use data; and legislation that protects against breaches of confidentiality.
· Increase public confidence in surveillance and protect the right to privacy through the enactment of regulations, policies and laws that preclude the non-public health use of the data.
· Where named-based or coded reporting is employed, assess periodically the extent to which incomplete reporting, incomplete diagnosis, or duplication of cases is compromising the utility of the received data.
· In the use of sentinel surveillance that is unlinked, ensure that personal identifiers are removed from blood specimens in a way that does not permit re-linkage.
· Strengthen the means and frequency by which the results of surveillance are disseminated in ways that open up the epidemic; reinforce prevention and care programmes; reduce fear, stigma and denial; and avoid the further stigmatisation of certain groups of people, e.g. migrants, refugees, sex workers, men having sex with men.