No Right to Consent': Michigan's Plan to Control, End HIV Raises Privacy Concerns

Editor's Note: This article has been updated for clarification by request from the Michigan Department of Health and Human Services.

Michigan health officials have been rolling out a comprehensive new strategy to control and end the HIV crisis for months. The strategy is part of a national project, but attorneys, AIDS Service Organization officials and more worry the plans could overstep the privacy rights of people living with or at risk for HIV and drive them away from testing and treatment. That could ultimately result in an increase in cases, rather than a desired decrease.
Katie Macomber, director of the Division of HIV/STD Programs for the Michigan Department of Health and Human Services, said the new initiatives will help address the HIV crisis.
Macomber said two specific plans are being rolled out. First, health officials are seeking a change to Michigan's partner services law. Under the current law, local health officials are allowed to keep the names or other identifying information of sexual and needle sharing partners gathered during a post diagnosis interview for those with HIV and some sexually transmitted infections.
That is unhelpful, Macomber said, and as a result, the state wants to be allowed to keep that data forever. For the past decade at least, health officials have circumvented this law by hosting information solicited in those interviews on databases. Until 2016, the database was owned and operated by the state. Since then, the database is run and owned by the Centers for Disease Control and Prevention, the federal health agency.
When a person is diagnosed with HIV, a disease investigar for the state meets with that person and solicits information on partners who may be at risk. The program is supposed to be voluntary, but under the new program, health officials rather than presenting the voluntary nature of the program, will "work to get people to yes," said Macomber. The names, contact information and risk information is collected and entered into the database. It remains there indefinitely and health officials can access the identification of partners at any time, and compare them to new or old partner identification situations.
If a person declines such services, which is their right under the law, Macomber said the workers will be encouraged to revisit that client again in a few weeks.
"We want to work to get them to yes," she said of the direction. "When that law was written, we didn't really have anything to offer a person who was diagnosed or their partners. But today we have PEP (Post-Exposure Prophylaxis) and PrEP (Pre-Exposure Prophylaxis) for those who are not living with HIV. And we have Treatment which can make it so someone cannot transmit the infection."
And Macomber said health officials will continue to contact those living with HIV if they are prioritized as needing services, even when they have declined partner services, on a regular basis to offer them partner support services. Situations like these include, among other things, if a patient falls out of care or if they part of a growing cluster.
"Partner notification is going to be a lifelong thing," she said in an interview. "We want to continue to offer it."
She said the state is not interested in becoming the "sex police," for people living with HIV, merely working with them to continue to disclose their status to their sexual and needle-sharing partners.
If a person living with HIV declines partners services and changes contact information, state health officials will be leaning on AIDS Service Organizations to provide them an "in" with the disease investigators, Macomber said.
"We would maybe ask them to contact the client and invite them in for a coordinated meeting with us at the agency," she said.
ASO officials who spoke to BTL on the condition of anonymity for fear of impacting prevention grants said the move could jeopardize already tenuous relationships with those struggling with their diagnosis and the social impact and stigma which follows.
"We become an arm of that," said one agency staffer. "The health department folks do not have a great reputation in the community. If we are seen as an arm, that will hamper the trust."
Macomber did acknowledge that investigators with local health departments have had a contentious relationship with those living with HIV. That has often led to serious confrontations, fueled by rumors of how the health department staff track down and communicate with those newly diagnosed with HIV.
And while that may require a makeover, Macomber said the state is moving forward and expects ASOs to be "partners" with local health agencies.
The second stage of the plan is to use lab tests that are reported to the state by law in tracking down potential undiagnosed cases and identifying underground meeting spaces where HIV may be being transmitted.
State health officials have access to thousands of genetic tests of the virus found in people living in with HIV in MIchigan. Because HIV mutates very quickly, but in a identifiable pattern, health officials, with the assistance of a computer program provided by the CDC, can identify related cases.
The studies do not, however, show directionality of transmission. All they show is that the infections are genetically similar.
As an example, just because Joey and Fred have a similar genetic makeup of their HIV virus, it does not mean one of the two transmitted the virus to the other. There could be additional people, not identified, who transmitted the infection.
And it's those unidentified persons living with HIV Macomber said the state is hoping to identify, get tested and get into treatment.
Interestingly, although those living with HIV who have an undetectable virus are unable to transmit the virus, Macomber said the growing clusters identified by the state so far include persons who have undetectable viral loads.
"So we're going to them and asking them about their social networks," she said. "We're asking them who they are having sex with, where they hang out, how they connect. And that may lead to targeted testing events in those locations or other outreach. It will also mean reaching out to partners."
There is a risk, she conceded, that eager prosecutors could use this genotype cluster studies as evidence in criminal proceedings against persons living with HIV. But she said people living with HIV have no right to remove their data from the state's systems.
Jay Kaplan, staff attorney for the LGBT Project of the ACLU of Michigan, said his agency is reviewing this information and is unable to render a legal opinion at this time.
Philip Ellison, an attorney in Saginaw, is suing the MDHHS over it's collection of the blood of newborn babies in Michigan. That blood is used by the state to detect genetic diseases, but then is stored. He claims in his federal suit that the state did not obtain consent for the blood, tests or storage. He also claims that law enforcement has accessed the database for genetic comparisons.
He reviewed all the documents BTL used in this reporting, including the interview with Macomber.
"The Department and its officials (like Katie Macomber in her interview) simply do not value or even remotely protect Michigander's rights under the US Constitution," he wrote in an email statement to BTL. "Even potentially worse, they know they are in violation and still are intentionally violating the rights of individuals to decline participation in medical treatments and testing. Medical decisions should be privately made between doctors and patients. Instead, state officials in the Newborn Screening Program (and now the HIV/STD division) of the Department of Health and Human Services are essentially invading, copying, and using patient blood tests, DNA results, and medical files without consent. It is both unlawful and wholly Orwellian."
Asked if people would be informed and allowed to consent or not to the use of their genetic data by the state, her response was, "You have not right to consent to that."


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