The Role of Name-Based Notification in Public Health and HIV Surveillance
UNAIDS Best Practice Collection
Reference Number: UNAIDS 00.28e
In the context of AIDS, concerns about medical privacy have been conspicuous since the epidemic’s onset. As a disease initially identified with marginalized populations, and that carried with it a high risk of discrimination and the burdens of stigmatization, AIDS evoked persistent appeals for medical privacy. In the absence of protection, individuals with HIV would be subject to socially imposed suffering. Without widely recognized assurance of confidentiality, individuals most in need of counselling, testing, and care would be reluctant to come forward. Thus the protection of the public health, it was stated, was intimately related to respect for privacy.
Both historically and in contemporary practice, reporting the names of those with disease to public health authorities has represented a good example of an acceptable limit on medical privacy. It has also often provided a battleground between those with commitment to individual privacy, and those who have given greater weight to concepts of the public good where the claims of the individual are subordinate. In the controversies that have emerged, conflict has centred on how potential public benefits are weighed when considering limits on medical privacy. When the public health need is deemed sufficiently compelling, debate has focused on how much privacy should be compromised.
Debates over whether AIDS and HIV should be made reportable to public health officials, and whether such reports should contain the names of those diagnosed, have regularly recurred during the epidemic, and remain ongoing. In this discussion, we seek to provide a broad context for the discussion of the issues involved.