Potential deterrent effect of name-based HIV infection surveillance

To meet federal recommendations to collect case reports of HIV infection, California has adopted a non-name code system to conduct HIV surveillance. The objective of this study was to evaluate among HIV test takers the acceptability and preferences for the 3 major types of HIV infection reporting-name, name-to-code, and non-name code. Interviewer-administered exit surveys with spoken scripts and matching printed materials clearly outlining the 3 HIV reporting options were conducted among HIV test takers immediately following appointments for pretest HIV counseling and blood collection. The study enrolled 208 HIV test takers at 14 publicly funded HIV testing sites in 4 California counties (Los Angeles, Riverside, Fresno, and Santa Clara). Overall with respect to which would be the most acceptable system, 67% reported non-name code, 19% reported name-to-code, and 12% reported name-based HIV reporting (P < 0.0001). A second sample of 226 exit surveys taken 1 year following implementation of California's non-name code HIV infection reporting system continued to show a significant preference for non-name code HIV infection reporting. Significant independent predictors of a preference for coded HIV reporting in both the pre- and postimplementation period were men who have sex with men (odds ratio [OR] = 5.7, 95% CI: 1.2-26 in the preperiod) and having just taken an anonymous HIV test (OR = 3.6, 95% CI: 1.4-9.3, P = 0.009 preperiod). Were the state to adopt name-based HIV reporting, significantly fewer individuals report being likely in the next 12 months to have a confidential HIV test than report being likely to have an anonymous HIV test (51% likely confidential vs. 76% likely anonymous, P < 0.0001). This analysis documents strong support, among HIV test takers in California, for a non-name coded HIV reporting system and indicates a high probability of a shift away from confidential testing toward anonymous testing under a scenario of name-based reporting. This shift is of concern as confidential HIV testing is the basis of US HIV surveillance systems.