How Confidential Are Your HIV Test Results? (In Michigan, Not Very)

Most of us assume our confidentiality is protected when we take an HIV test. But if you live in Michigan, don’t take that for granted.

For the past ten years, the Michigan Department of Community Health has been collecting names, birth dates, risk categories, and other details of people who get tested at publicly-funded locations, reports the American Independent (TAI)

The information, which also includes the coded identities of people whose partners are HIV-positive, is kept in a database “indefinitely.”

Authorities claim there are no names in the database, but somehow regional health departments have accessed the files and tracked down individuals they feel pose a public health threat. (According to TAI, the database has also been used as part of criminal prosecutions against people with HIV.)

The study, authored by University of Michigan Ph.D. candidate Trevor Hoppe, found that the database has been used specifically to identify and target sexual or needle-sharing partners of newly diagnosed HIV-positive persons where the infected person may not have disclosed his or her status to partners; women who are HIV-positive and have become pregnant; and HIV-positive persons who have been diagnosed with other sexually transmitted infections.

If you knew certain details about a subject, you could access their corresponding test results. A random stranger probably couldn’t figure it out (probably), but if the district attorney wanted to convict you under Michigan’s HIV-transmission law, he could get the health department to disclose your status, when and where you found out, and other incriminating details.

Though the department tells patients their results are confidential, it has a funny definition of the word: all positive and negative results are reported to state authorities.

“Multiple state-certified HIV testers confirmed with TAI that they are taught in mandatory certification training to tell clients that testing information is kept confidential but not to mention that the information is collected and maintained by the state.”

Michigan isn’t the only state to use an identity-based coding system, but not every state does. The Centers for Disease Control and Prevention says it only requires anonymous demographic information for grant-reporting purposes.