What keeps your HIV status and other personal information safe from the public? Tamara Packard outlines a statute in place that protects your privacy.
In these days of blogging, YouTube and cell phone plans designed so you can talk to anyone and everyone, at all times and for unlimited minutes, it can be hard to remember that some people prefer to keep some things private. In these days of the Patriot Act, Homeland Security and the diminishing rights of citizens to remain free of government scrutiny, it can be hard to believe that we still have laws that protect our privacy. But back in the mid-1980’s, when our elected officials began paying attention to HIV/AIDS as a real problem, and the victimization and stigmatization of people with AIDS was rampant, Wisconsin enacted a number of laws to protect against the misuse of a person’s HIV information.
For instance, Wisconsin employers are prohibited from requiring employees to take an HIV test or disclose their HIV status. Healthcare providers who intentionally and inappropriately disclose the results of a patient’s HIV test results can be severely punished by the licensing agency. And while a person has the right to disclose his or her own HIV test results to anyone they wish, no one else, without that person’s express permission, may share that information with anyone else except in very limited circumstances. Disclosure of another’s HIV test results without their permission, depending on the circumstances, is punishable as a misdemeanor, a felony or with a civil forfeiture (i.e., a fine).
Unfortunately, the laws protecting against disclosure of HIV test results have very limited usefulness, as courts have read those laws very narrowly to find that they do not forbid disclosure of another person’s HIV status. Rather, they forbid only disclosure of the information obtained through authorized access to the written record—the literal results.
Wisconsin does, however, have a statute which guarantees all of us privacy, not only around our medical information that we may reasonably wish to keep private, such as HIV status, but also all other matters concerning our private lives that most people would find offensive if disclosed to the public. That is, the statute protects against public disclosure of private facts. A person whose right-to-privacy has been violated in this way can sue the violator for the harm done, both emotional and financial, by the disclosure and can seek a court order directing the violator to stop any ongoing or further disclosures. If the victim wins the lawsuit, a court can order the violator to pay the victim’s reasonable attorney fees.
One of the earliest court decisions interpreting the privacy statute was brought in the late 1980’s by an HIV positive prisoner in the Columbia County Jail who suffered with several symptoms of HIV infection. After being hospitalized during his jail stay, he became aware that his HIV status was general knowledge among jail staff and inmates, and suspected that some jailers had learned of his status by looking at his private records and then shared the information with others. He brought a lawsuit under the law governing confidentiality of HIV test results, as well as the more general privacy statute. The court did not allow him to pursue his case under the HIV test results law, but did allow the privacy claim to go forward.
This inmate’s case is important in the development of the law of privacy in Wisconsin because it established that one’s privacy can be violated by the transmission of private information to a relatively small group of people, in his case, the employees and inmates in a jail. It is not necessary for the newspapers or TV news to publish one’s private information for that information to be made “public.” This case is also important because the court did not allow the jail officials to escape liability for their behavior by claiming that they had a “need to know” the inmate’s HIV status. The court rejected that theory and also noted that even if that were true, there was no good reason for sharing the information with non-medical staff and other inmates.
While there can be no doubt that life for people with HIV/AIDS has become better, easier and longer, there should also be no doubt that plenty of stigma, prejudice and fear remain. As I often tell my clients, it is better to have a job and your emotional health than a claim. When it comes to your personal information, whether it be your HIV status, the illegal things you did in college, or your financial health, be careful about whom you share it with.