A new tool monitoring the spread of HIV raises privacy concerns
In 2008, Suttle said, a former partner accused him of not disclosing he was HIV-positive. He was charged under Louisiana law with “intentional exposure to AIDS virus.” Rather than fight the charge and risk a longer sentence, Suttle pleaded guilty, received a sentence of six months in state prison, and was required to register as a sex offender.
“You can be criminalized, certainly, for existing as a person living with HIV,” he said.
Suttle, who now lives in New York, said his experience has him worried about a new tool being promoted by federal officials to monitor the spread of HIV. With molecular surveillance, public health officials use routinely collected blood samples to identify how the virus is spreading among people.
Suttle said such data could be used in cases like his. “With this surveillance, you could be connected to many different people or considered to be the source that transmitted to all these other people,” he said.
But molecular surveillance has met considerable opposition since it was rolled out nationally. Service providers, health equity advocates, and people living with HIV worry the risks of the approach outweigh the benefits, and their concerns have gotten louder as awareness of the tool grows. Some have called for the practice to stop until federal health officials address concerns about patient consent, data security, and the potential for HIV criminalization.
One of the group’s main concerns involves consent. It says many people living with HIV don’t know that genetic information about their strain of the virus could be used to link them to other people and that they would rather not have personal data used that way.
Viral genetic data has traditionally been used to test for resistance to HIV treatments, he said, and people don’t necessarily know about its use for surveillance. That has bred discomfort and fear about the program among service providers and people living with HIV, Quamina said. He added that those feelings can fuel stigmatization and keep people from seeking or keeping up with needed treatment.
“I think it absolutely can have a chilling effect on care engagement,” he said.
The agency says jurisdictions must meet its standards for data security and shouldn’t use HIV genetic sequences to determine who may have infected whom or the direction of transmission between people.
But some advocates worry that the decentralized nature of the U.S. public health system — which puts the responsibility for running programs in the hands of local agencies — makes that data vulnerable to misuse.
She questioned whether molecular surveillance is needed in areas where infections are high and public health officials know the groups most at risk. “Is the juice worth the squeeze?” she asked.
The CDC says molecular surveillance has helped detect about 300 HIV outbreaks across the country, most of which were previously unknown. But some state health officials — even those who see the value of the strategy — question whether it’s useful in every jurisdiction.
Still, she acknowledged other states might not see the same benefits from molecular surveillance and might not have the money, workforce, or technology to fully implement the practice.
Samuel Burgess, the STD/HIV program director for the Louisiana Department of Health, said very few HIV clusters in his state have been detected using molecular surveillance, in part because the process of sequencing viral genetic data can take too long for the information to drive a quick reaction. Delays sometimes occur in HIV diagnosis and reporting, Burgess said, as well as in processing the data, sending it to the CDC for analysis, and waiting for the results.
In his state, Burgess said, public health officials already know who is most at risk of contracting HIV and the barriers they face in accessing care.
Dr. Alexa Oster, who leads the HIV cluster detection and response program at the CDC, has heard these concerns before.
“Our guidance states very clearly that public health data should only be used for public health purposes,” Oster said. “There is some variability in laws. And we continue to work with health departments on strengthening their data protections by providing technical assistance, additional guidance, and resources.”
Oster called molecular surveillance a “core public health function” and indicated the practice would not stop. But she said the CDC is open to considering how to allow local jurisdictions to tailor the program to their needs.
“We’re always happy to and interested in hearing the various perspectives about this work,” she said. “We feel that this type of dialogue and exchange can lead us towards a better place.”
People with serious reservations about molecular surveillance think that engagement is crucial.
Tori Cooper directs community engagement for the Human Rights Campaign’s Transgender Justice Initiative and has spent years working with people living with HIV in Atlanta. She said some people concerned about the effort might be convinced of its benefits by focused and continued outreach.
“I believe that the onus now is on the CDC to do that, because there’s certain folk — there are a lot of folks — who are absolutely terrified,” she said.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.