At a time of polemic surrounding the content of government decrees n° 99-362 and n° 99-363 of May 6, 1999 (published in the Journal officiel of May 13, 1999) concerning epidemiological surveillance and associated obligations, the National AIDS Council wishes to point out that, on January 29, 1998, it issued an “Opinion on projected changes to the system of epidemiological surveillance of HIV in France” following referral of the matter to the Council by the General Health Directorate (DGS) at the behest of the Secretary of State for Health.
The Opinion of January 29, 1998 notably recommended that any new system of surveillance of HIV infection should “be based around organizations that are already operational who should given the task of involving medical practitioners making anonymous declarations of HIV infection on behalf of patients informed of this” “that such declarations should not be compulsory (nor prescribed by law), but should involve French practitioners in effective and responsible participation in public health actions in the context of good clinical practice”. The two recommendations are based the notion that the “imposition of obligations presupposes the existence of an automated system – an (illusory) system of penalties in the event of non-compliance with the regulations – or even amendments to the Code of Public Health Law, made even more pointless by the risk that it would bring the law into disrepute (if compliance is less than complete, which is the foreseeable outcome). Provisions laying down mandatory requirements not directly in patients’ interests are invariably less effective than schemes based on individual involvement and a determination to improve practice”.
The National AIDS Council therefore regrets that this Opinion was not taken into consideration by the authorities when drafting the decrees cited above, and calls for a reasoned review of the issue of HIV epidemiological surveillance to reconcile fully the need for improved monitoring for the epidemic with total compliance with the requirements of medical confidentiality and human rights. The Council particularly draws attention to measures needed for the protection of anonymity when data is transferred.