"The issue of reporting the names of people with HIV is coming to the forefront, and a number of important concerns must be addressed before such a system is adopted," said Seth Kilbourn, HRC's senior policy advocate for health issues.

Kilbourn outlined the following concerns:

* The need for an expanded HIV surveillance system must be fully explained and justified. CDC must explain why its existing HIV surveillance efforts are no longer adequate. They must also demonstrate that the benefits of expanded HIV surveillance will outweigh the costs both in terms of resources and increased risk of confidentiality breaches.

* Confidentiality and privacy concerns are legitimate. Any system of expanded HIV surveillance must address these concerns in a real and meaningful way. The use of unique identifiers (as opposed to names) must be fully explored as an option.

* If names are to be used, the CDC must demonstrate that they are an essential part of the surveillance system. Further, the CDC must develop a clearly articulated policy to ensure that the privacy and confidentiality of people with HIV are fully protected.

* Anonymous testing must be accessible to anyone who seeks it. Studies show that without anonymous testing options, people at risk for HIV will avoid getting tested. No one should be deterred from getting tested for HIV because of privacy and confidentiality concerns.

* Surveillance systems at the local, state and national level must be separated from any partner notification and contact tracing systems. Surveillance data are a mechanism to obtain accurate information about the state of the HIV epidemic. They must never be used as a registry for any other purpose.

Kilbourn noted that an article in this week's New England Journal of Medicine recommends that all states require HIV case reporting to better monitor the AIDS epidemic. The article, written by Lawrence Gostin of the Georgetown University Law Center, John Ward of the CDC and A. Cornelius Baker of the National Association of People with AIDS, states that "unless we revise our surveillance system, health authorities will not have reliable information about the prevalence, incidence and future directions of HIV infection."

Currently, all people who are diagnosed with AIDS are reported by name to state and local health departments. State health departments then delete patient identifying information from the report and send the information to the CDC for compilation into a national picture of the AIDS epidemic. However, as AIDS deaths have declined and people are living longer with asymptomatic HIV disease, a national picture based on the end stages of disease progression may be less useful.

The Journal article does not explicitly call for reporting the names of people with HIV to state and local health departments. Noting concerns about privacy and discrimination, however, the authors call for more work to ensure community acceptance of HIV case reporting. The article questions the utility of using unique identifiers which do not include the patient's name because they "do not yet provide high-quality, unduplicated HIV data at a reasonable cost."

The American Civil Liberties Union also released a position paper Monday on HIV surveillance, opposing the use of names reporting to state and local public health authorities. The ACLU asserts that name reporting would discourage people from getting an HIV test, that legal protections are weak, and access to care is not guaranteed for all people with HIV.

"In a perfect world -- in which gay people had full civil rights protections -- names reporting would not be controversial," Kilbourn said. "But as long as people can lose their jobs, their homes or their children merely for being gay, privacy concerns are legitimate."

Ultimately, which diseases to report and how to report them, are state-level decisions. Twenty-six states currently require reporting of HIV by patient name.

"Any effort by the CDC to recommend or require a national system of HIV surveillance must include the principles outlined above, in addition to the acceptance of the affected community," Kilbourn said. "Without that acceptance, any expansion of the HIV surveillance system will surely fail. HRC is committed to meaningful dialogue with the CDC on this issue and hopes that it will adequately address the community's concerns."