Mich. HIV data collection violates intent of statute, says lawmaker who helped create law

LANSING, MICH. – Michigan’s health department is violating the legislative intent of an HIV-related statute – and maybe the law itself – by indefinitely collecting information on people who test for HIV at federally funded clinics, says a former state lawmaker, who helped pass sweeping health reforms in the wake of the AIDS epidemic.

“The intent of the law was to encourage people to know what their status was, but also to protect people’s privacy,” said former Rep. Susan Grimes Gilbert, a Republican, in a phone interview. Grimes Gilbert – whose last name was previously Grimes Munsell before she remarried – represented the city of Howell from 1987 to 1996.

“The fact that they’ve clearly had a violation of privacy means that the department better review – should review – their operations and procedures,” she said. “And it’s not just the violation [of privacy]; it’s the fact they’re keeping this data that it was never the intent of the legislature that they keep.”

In short, Grimes Gilbert said, “I think they are in violation of the statute.”

At issue is a provision of Michigan’s Public Health Code, which requires local municipalities to destroy, after 90 days, information collected in voluntary partner-notification programs. That provision went into effect in 1988.

But since 2003, the Michigan Department of Community Health has been requiring local health departments to enter that data into the state’s HIV Event System – where it is stored indefinitely and can be accessed at any time by local health authorities, The American Independent reported recently. As of June 2012, the HIV Event System has collected nearly 7,000 entries of partners identified through the voluntary partner-services program, according to records obtained through a Freedom of Information Act request. The partner-services program was set up to help those infected with HIV contact current and former needle-sharing and sexual partners who may have been exposed to the virus. Some of the partner-services entries are anonymous, but about 4,000 of them can be traced to individuals’ names.

The information in the HIV Event System is entered by local health department employees or state-certified HIV test counselors at local AIDS service organizations. These officials enter a person’s name, date of birth, and gender into the database, which generates a coded “unique identifying number” that is assigned to that individual. All subsequent files in the system are linked to that number. Therefore, if someone with access to the database knows the appropriate variables – a person’s name, date of birth, and gender – the database can provide the unique number for that person. Then it would be possible to access all other files associated with that person, including the identities of his or her sexual and needle-sharing partners.

Grimes Gilbert was instrumental in pushing through sweeping legislative reform in 1988 to address the growing AIDS epidemic in Michigan. The 1988 AIDS legislative package included Michigan’s HIV disclosure law – which makes it a felony for a person who knows he or she is infected with HIV to engage in sexual penetration, “however slight,” without first disclosing that status. She served as co-chair of the Michigan House Republican Task Force on AIDS in 1987. And in 1988 she served on the American Legislative Exchange Council’s AIDS Working Group, helping to write a series of state-based model legislation that was instrumental in creating HIV-criminalization statutes around the country.

Health department spokeswoman Angela Minicuci said the HIV data collection does not violate state law.

“Requiring local health departments to enter partner services data into the HIV Event System is consistent with the Public Health Code, sections 5114 and 5114a (MCL 333.5114 and 333.5114a),” Minicuci said in an email. “The system automatically encodes and encrypts names so no personal identifying information is retained by either the local health departments or the state health department.”

Others, including a sitting lawmaker, disagree.

“This clearly is an end run around the law,” said state Sen. Steve Bieda (D-Warren), who sits on the Senate Judiciary Committee. “While technically legal, it appears to be a very blatant action to get around the state’s law.”

Bieda said the data collection does not meet the legislative intent of Michigan’s laws.

State officials say the database does not contain identifiable personal information, despite evidence that the database has been used to institute “health threat to others” actions against persons living with HIV.

Michigan law requires those recently diagnosed with HIV to inform former sexual and needle-sharing partners of their infection. The partner-services law was designed to provide assistance in contacting partners and is designed as a voluntary, confidential program. The goal of such programs is to identify those who are at risk of, or may in fact be infected with, HIV to prevent further transmission of the virus.

Joshua Moore, a lawyer at Detroit Legal Services, which works specifically on HIV-related legal issues, also said the data collection is a way around the law. He is advising newly diagnosed HIV-positive persons not to participate in the voluntary partner-services programs offered by local health departments.

“In light of knowing that the information is being kept permanently by the State of Michigan I as an attorney would advise an individual to not disclose this information,” Moore said an email.

Not sharing partner information with the local health officials places the burden of notification on the newly diagnosed person.

“The law is clear that data related to the partners of people living with HIV must be destroyed after 90 days,” said Emily Dievendorf, policy director of the LGBT-rights group Equality Michigan, in an email. Over half of HIV infections in Michigan are attributed men who have sex with men. “Equality Michigan demands that the state review all HIV data collection efforts to ensure that they honor the laws and confidentiality, which are the cornerstone of our trust as patients in the healthcare system.”

The health department, however, is declining to review its data-collection program.

“The HIV Event System and its data elements are constantly under review for quality assurance and quality improvement,” Minicuci said, “however, no extraordinary actions are underway at this time because the system is sound.”

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