This report reviews several studies conducted in the United States and in the developing world to determine the major barriers individuals—and in particular women—face in disclosing their HIV status to partners. While mandatory disclosure or reporting laws tend to view disclosure as an outcome, this report defines it as a process the individual must undertake. This definition acknowledges the numerous factors that influence the decision to disclose and allows health care providers, advocates, and policy makers to consider the multiple interventions to help support individuals through this process. The report identifies the major barriers to disclosure in both the United States and developing world and among different ethnic groups within the United States. Barriers include fear of abandonment, rejection, discrimination, violence, and upsetting family members, as well as lack of social security or health care.
The report emphasizes the necessity of informed consent and counseling in HIV testing. Such counseling can help individuals understand HIV testing, prepare for results, and identify and overcome barriers to disclosure. In particular, it recommends identification and referral of domestic violence in HIV testing, and cites New York's and California's laws in effect at that time (California's HIV testing law unfortunately has been amended—and diluted—since this report's publication) that integrate domestic violence screening and support during HIV testing. Counseling also was shown to increase likelihood of testing; one study in the United States found that for every five minute increase in the length of individual counseling, the rate of acceptance for HIV testing more than doubled.
The report also cites the need for a human-rights based approach to HIV testing and disclosure, including informed consent in testing, anti-discrimination laws that protect individuals living with HIV from discrimination in both the public and private sector, and laws protecting the privacy and confidentiality of individuals living with HIV.
The report notes that few, if any, studies have been done on disclosure within communities of men who have sex with men, sex workers, and intravenous drug users, demonstrating the stigma associated with these groups.