Mervyn Susser

Informed consent for HIV testing in a South African hospital: is it truly informed and truly voluntary?

OBJECTIVE The purpose of this study was to assess informed consent to human immunodeficiency virus (HIV) testing in a perinatal HIV transmission study in a major referral hospital serving a largely Black population in South Africa. METHODS First-time antenatal clinic attenders who were randomly selected from those enrolled in the perinatal HIV study (n = 56) answered questionnaires before and after counseling. RESULTS Knowledge of HIV transmission and prevention, high at the outset, was little improved after counseling. The acceptance rate for HIV testing was high. Despite assurances that participation was voluntary, 88% of the women said they felt compelled to participate in the study. CONCLUSIONS Informed consent in this setting was truly informed but not truly voluntary.

SCREENING PROGRAMME FOR PREVENTION OF DOWN'S SYNDROME

Abstract The feasibility of a preventive programme for Downs syndrome is analysed. Whereas estimates show the incidence of the condition to be declining because of demographic factors related to maternal age, prevalence is rising strikingly because of increasing survival. It is the predominant single cause of severe mental subnormality. Strategies for prevention are considered. Prevention of conception could prevent a third of cases at best, but it is most unlikely to achieve as much. Intervention after conception by prenatal diagnostic screening is made possible by amniocentesis and karyotyping. Almost total prevention of Downs syndrome could be achieved by screening all pregnant women. Five aspects of a prenatal diagnostic screening programme are reviewed: amniocentesis, laboratory screening by culture and karyotype, induced abortion of affected fetuses, the development of a comprehensive service, and evaluation of efficacy and ethics. It is concluded that a preventive prenatal diagnostic screening programme is feasible. The ethical constraints are the same as those on elective abortion in general, and depend on the laws and values of the society considering the programme. An outline is given of a proposed programme for New York City.