Confidentiality in HIV Testing Remains Controversial
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
"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
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.