Confidentiality in HIV Testing Remains Controversial

From the WebMD Archives

Nov. 10, 1999 (Chicago) -- If agencies that test for HIV have to name names, at-risk people may shy away from testing. On the other hand, being named may make no difference at all. Speakers in a panel here at the 127th annual meeting of the American Public Health Association shared studies whose findings yielded different results about the importance of confidentiality in HIV testing and treatment.

"Confidentiality has been controversial, and will continue to be in the future," moderator Richard R. Sun, MD, MPH, tells WebMD. "Some of the studies show that confidentiality can promote people's willingness to be tested; therefore, it leads to increased partner notification. Another study shows that the number of people being tested has not declined in a state that requires the reporting of names. Physicians need to be knowledgeable about HIV-related confidentiality issues in their states, because the liability issues vary with each state's confidentiality and reporting requirements." Sun is chief of the HIV/AIDS epidemiology branch of the California Department of Health Services in Sacramento.

"In our survey ... respondents who are at high risk [for HIV], and those who are HIV-positive, are more concerned about confidentiality than are low-risk respondents," Liza Solomon, DrPH, and director of AIDS administration for the Maryland Department of Health in Baltimore, tells WebMD. "With each level of lower confidentiality, fewer people were willing to be tested," she says.

Solomon and colleagues conducted telephone surveys of about 270 subjects. Among all participants, testing where no names are used, also called anonymous testing, was the option that was most likely to be accepted; 93% of low-risk and 89% of high-risk respondents expressed willingness to be tested under such circumstances. The testing option that required reporting of names to government agencies was the least favorable. Only 67% of low-risk and 64% of high-risk respondents accepted it.

However, does the elimination of names actually cause a decline in testing? Perhaps not, according to a study presented by Brian Castrucci, a PhD candidate in public health at Columbia University in New York. In a study of HIV testing patterns in North Carolina, he and colleagues found a decline of only 5% being tested between the year before and the year after the state dropped anonymous testing.

Nevertheless, HIV-positive people express strong feelings about confidentiality and the violation of it, according to Trang Q. Nguyen, BS, project coordinator at the Center for Health Policy, Law, and Management at Duke University in Durham, N.C. In small focus groups of rural HIV patients, 13 of 15 said their providers had broken their confidentiality. In one case, the patient's children found out about the parent's HIV status on a playground from the child of a health care professional. Nguyen and her colleagues found that patients have a stricter definition of confidentiality than health care professionals. For example, patients consider physicians chatting in an elevator about a case to be a breach of confidentiality.

One way to follow HIV status and protect confidentiality is through so-called unique identifiers, by which a code is assigned to each person getting tested. However, some people even find the term "identifier" to be unacceptable, says Douglas A. Shehan, BS, senior research associate for HIV prevention services research at the University of Texas Southwestern Medical Center in Dallas. He and colleagues developed the term "Unique Testing Code" (UTC), which was received more favorably by patients undergoing HIV testing in a recent study. An example he cited of UTC would be using the second letters of a person's first, middle, and last names. UTC offers another advantage. "Combined with new testing technology to determine incident HIV infections, the UTC method offers a useful tool for monitoring infection trends," he says.