Ethics, social forces, and politics in AIDS-related research: experience in planning and implementing a household HIV seroprevalence survey

Abstract

A controversial proposal for a survey of HIV infection in a probability sample of U.S. household residents as part of the government's surveillance of the AIDS epidemic provided a number of challenges to survey science. These were compounded by ethical concerns and social sensitivities surrounding the topic. Questions about the ability of a voluntary survey to produce an accurate national estimate of infection demanded rigorous study. In 1987, the Centers for Disease Control began planning field tests of a survey to obtain blood samples and information about respondents' sexual behavior and drug use. The authors were part of the team deployed by the National Center for Health Statistics that, with the contractor staff from Research Triangle Institute, conducted studies in Pittsburgh and Dallas, but only after much was learned about developing processes and procedures for dealing both with broad community concerns and with the interests of those gravely touched by the epidemic