Compulsory notification of HIV infection within a new system for anonymous reporting of notifiable diseases in France

The implementation of compulsory notification of HIV in France has been the subject of debate for many years, mainly due to concern for the human rights of patients with HIV, with only AIDS cases being notified. An anonymous reporting system for HIV infection was scheduled to begin in 1999, but this was delayed due to opposition from organisations demanding measures to strengthen patient anonymity and data protection. The new system is the product of extensive collaboration between the Institut de Veille Sanitaire (InVS), patient associations, civil rights groups, health care professionals (microbiologists, clinicians, epidemiologists), the ministry of health, and expert committees (on safety, ethics), all of whom are represented on a steering committee. The new arrangements, which reinforce patient anonymity and data protection, meets the requirements of the parties involved, and has been authorised by the National Commission for data processing and liberty (CNIL), the national authority for the protection of personal data collected on individuals.