Secretly Collected HIV Test Results Used in Criminal Prosecutions
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Minicuci said that new users are taught how to use the HIV Event System by other current users, and that no standard protocols exist outlining who can access what information from the database, for what reasons, and what can be done with it. The system also does not track who has accessed which information in the database – a so-called “digital fingerprint,” which Minicuci said “was not required” by the CDC in the development of the database.
All of this raises significant questions of privacy, civil liberties experts say.
“There are certainly privacy rights involved, particularly when clients are not being told that the information they are providing is being put in a database which can be utilized to assist with criminal prosecution of people living with HIV,” said Jay Kaplan, staff attorney for the American Civil Liberties Union of Michigan LGBT Project. “It’s ironic that in its effort to try to prevent transmission of HIV as part of the HIV-testing process, this policy and practice will likely discourage people from being tested, because they fear criminal prosecution for having knowledge of their HIV status.”
Rose Saxe, from the National ACLU AIDS Project, also weighed in on the issue. She said the state is collecting confidential health information, but also “deeply personal information.”
“The state has a constitutional obligation to keep this information secure, and to protect the privacy rights of people testing for HIV,” Saxe told TAI in an email. “Because of the sensitivity of this information, the ACLU believes it is critically important that the state have in place policies to ensure that this information is used appropriately. This includes safeguards to prevent inadvertent disclosure, and ways to ensure that it is only accessed for legitimate reasons by health department employees. If the state cannot or does not undertake steps to protect this deeply private information about people in Michigan, it has no business collecting and storing it indefinitely.”
Saxe also raised a concern that those submitting for HIV testing are being misled about who will know that they have tested for the virus.
“Information we’ve received, however, suggests that the state is advising people that information will only be retained if they do have HIV,” Saxe said. “Misinforming people about the data that’s being collected is a breach of trust, and a violation of people’s rights to make informed decisions about how and when to test for HIV.”
Kaplan said people being tested under government-funded programs have a right to know what information is being collected and for what that information will be used.
“I believe [those testing for HIV] should be concerned and they should be informed about what happens to the information that they provide and what that information can be used for,” Kaplan said. “Under the current policy, to avoid having their info collected and used, they would have to either forgo HIV testing at local health departments, and seek out private testing sites (including their private physicians), both which may not be an option for everyone.”
Saxe said she is confused about why the state is collecting information on people who do not test positive for the virus.
“We also have serious questions about why the state is retaining private information about people who test negative for HIV,” she said. “Michigan would need a very good reason to justify keeping this information, and certainly should not be misleading people about what will happen with their private information.”
Todd Heywood is a senior reporter for The American Independent.