Evidence and the Politics of Deimplementation: The Rise and Decline of the "Counseling and Testing" Paradigm for HIV Prevention at the US Centers for Disease Control and Prevention.

Abstract

In situations of scientific uncertainty, public health interventions, such as counseling for HIV infection, sometimes must be implemented before obtaining evidence of efficacy. The history of HIV counseling and testing, which served as the cornerstone of HIV prevention efforts at the US Centers for Disease Control and Prevention (CDC) for a quarter of a century, illustrates the influence of institutional resistance on public health decision making and the challenge of de-implementing well-established programs. In 1985, amid uncertainty about the accuracy of the new test for HIV, public health officials at the Centers for Disease Control and Prevention (CDC) and AIDS activists agreed that counseling should always be provided both before and after testing to ensure that patients were tested voluntarily and understood the meaning of their results. As the "exceptionalist" perspective that framed HIV in the early years began to recede, the purpose of HIV test counseling shifted over the next 30 years from emphasizing consent, to providing information, to encouraging behavioral change. With this increasing emphasis on prevention, HIV test counseling faced mounting doubts about whether it "worked." The CDC finally discontinued its preferred test counseling approach in October 2014. Drawing on key informant interviews with current and former CDC officials, behavioral scientists, AIDS activists, and others, along with archival material, news reports, and scientific and governmental publications, we examined the origins, development, and decline of the CDC's "counseling and testing" paradigm for HIV prevention. Disagreements within the CDC emerged by the 1990s over whether test counseling could be justified on the basis of efficacy and cost. Resistance to the prospect of policy change by supporters of test counseling in the CDC, gay activists for whom counseling carried important ethical and symbolic meanings, and community organizations dependent on federal funding made it difficult for the CDC to de-implement the practice. Analyses of changes in public health policy that emphasize the impact of research evidence produced in experimental or epidemiological inquiries may overlook key social and political factors involving resistance to deimplementation that powerfully shape the relationship between science and policy.