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.
The system rests on three main principles:
- Cases are notified by the microbiologist and the clinician (in the case
of children under 13 years, the paediatrician is the only person to notify)
(figure). The microbiologist, who performs the diagnostic test for HIV
infection, "initiates" the notification, and sends the notification
form to the doctor who completes it;
- Double anonymisation: (i) creation of an initial anonymous code by the
microbiologist, using software provided by InVS, (ii) automatic transformation
of this code to a second code upon entry into the InVS database;
- Patients are given information on the compulsory nature of the notification
by their doctor.
Only newly diagnosed cases have to be notified. The data to be collected
on the notification forms include age, sex, nationality, country of residence,
country of birth, occupation, reason for attending screening, previous HIV
serology, route of transmission, and clinical stage.
Facilities for eliminating duplicate reports and for following the progression
of disease (HIV, AIDS, and death) in an individual, were requirements of
the new system. The anonymising software generates a unique sixteen-letter
code from the initials of the first name and surname, sex, and date of birth.
The second coding stage, at the InVS database level, produces a second,
unique code, made up of over 100 characters.
In addition to the compulsory notification system, InVS and the laboratory
of the National Reference Centre (CNR) coordinate virological surveillance
of HIV. This applies to individuals over the age of 13 who, according to
information from their doctor, are not opposed to participating in the surveillance
system. The aim of the study is to evaluate whether or not the HIV infection
is recent (less than six months old), using a detuned assay, and to identify
whether the case is infected with group B virus or not, by serotyping. The
notifying microbiologist takes a sample on blotting paper from the bottom
of the tube that was used for the diagnostic test, and sends this to the
National Reference Centre. The sample is analysed and the results sent to
InVS, where it is linked to the epidemiological information provided by
the compulsory notification form. This process enables those recently infected
to be described, and provides an estimate of HIV incidence.
Figure: Notification of HIV infection (adults and adolescents 13
yrs and over)