Secretly Collected HIV Test Results Used in Criminal Prosecutions
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Minicuci said there is no way to be certain the records one is reviewing belong to a specific person, because the name does not appear in the system.
A state document created by MDCH explains that in Michigan test results are confidential. It specifically states that, “All positive HIV tests are reported to the health department.” It does not disclose, however, that negative tests results are also being reported and collected by the state.
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. The testers, who are employed by various agencies receiving MDCH money to conduct HIV testing, spoke on the condition of anonymity out of concern for their funding.
“’You have two options,” one tester said she tells clients, based on state-mandated certification training. “’You can test anonymously, where you don’t give us your name, but you do give us you date of birth and ZIP code. Or you can test confidentially, where you do give us you name but that is not shared with anyone unless you test positive; and then it is shared with the health department.’”
“It is not standard practice to review with testing clients what data is entered into the HIV Event System, or how client data is encrypted using the Health Resources Service Administration algorithm,” Minicuci said. “Clients must, under Michigan law, be provided with the option to be tested anonymously or confidentially. The difference between these types of tests are described and any questions the client has are answered before the counselor obtains the client’s consent to be tested.”
As of June 2012, the Michigan HIV Event System contained 701,281 entries, according to documents TAI obtained through a Freedom of Information Act request. Of those, 579,990 are of HIV-negative test results; 483,628 of 701,281 entries are confidential tests keyed to a person’s name with a UIN. In addition, 6,907 of these entries are from identified partners from partner services – a voluntary program to help those who are infected to contact current and past needle and sexual partners that they may have been exposed to the virus. And 4,041 of these partner-services entries are names-based UIN-coded entries.
The database became apparent when the department confirmed to TAI that it had initiated an internal investigation into whether the private health information of thousands of people with HIV and their partners had been improperly released. The state’s investigation found that a contractor had emailed some data within the HIV Event System from a protected government server – without encryption – to an email address at the company that created and maintains the database for the state. The state determined that no private information was released.
MDCH says information contained in the state database is intended to meet reporting requirements from the federal government. But the Centers for Disease Control and Prevention says it only requires anonymous demographic information for grant reporting.
Other states, like Indiana, also track information on people testing for HIV using an identity-linked coding system.
But others do not, like Minnesota, which collects demographic information on people who get tested for HIV but does not track that data linked to any identity-linked coding system.
No other reportable disease in Michigan has a corresponding database like HIV, Minicuci said.
According to MDCH, 785 people have access to some component of the database system. Of those, 13 users have access to all components of the database – partner services, HIV testing, and HIV-positive identification. The general users are employed by local health departments in positions such as disease investigators, or those persons employed by AIDS service organizations who conduct testing at various locations throughout the state.