Privacy v. HIV Data Collection

Proponents say more information improves treatment, but risks are real

In 2001, Robin T. Webb moved from New York to Mississippi, the state where he was raised. First diagnosed as HIV-positive in New York in 1991, Webb was familiar with the diagnostic tests that are used to track HIV infection, so it was routine when his Mississippi doctor ordered a test that measures the amount of virus in his blood, or a viral load test, and another that assesses that state of his immune system, called a T cell or CD4 count test.

What was not routine was the call he received from the Mississippi Department of Health.

“Upon that first visit, I got a call demanding that I see a [disease intervention specialist],” Webb said. “They said if you don’t come to this appointment we’ll come to your door.”

The specialist had an unambiguous message for Webb.

“They were trying to give a message to ‘Watch out. You are in Mississippi and it’s a whole different ball game here,’” Webb said. “The first-line communication was you can end up in jail… You not only have to disclose, the language, the nuance was you better not have sex with anybody.”

The department learns of new cases because doctors, hospitals, and testing labs must report all new AIDS or HIV diagnoses, the results of several HIV-related tests, and even when a person with HIV visits any doctor’s office for the first time.

“Any time somebody new comes to the state, a disease intervention specialist will come out and get a history from them,” said James T. DeDeaux, executive director of the South Mississippi AIDS Task Force. “There have been times in the past when the [specialists] thought they were the sex police.”

The task force operates a statewide hotline and it encourages people to report such encounters. It has not had any such reports in two years, DeDeaux said.

Mississippi is not alone. Fifteen states, including New York, require that all viral load and T cell count test results be reported. Another 34 require that some results of those tests be turned in.

Forty-six states, including New York, require that new HIV diagnoses be reported including names and other data, such as whether the person is a man who has sex with men, injects drugs, their race or ethnicity, sex, and age. With federal AIDS funding increasingly tied to names reporting, advocates expect that all 50 states and the nation’s capital will soon be reporting new HIV infections this way.

Reporting of AIDS, the advanced stage of HIV infection, has been standard throughout the nation since 1981. Those reports include all of the personal information that is associated with HIV names-reporting.

Now New York has further expanded the tests that must be reported. Last year, the state health department required that results of HIV subtype tests, which identify new strains, and of tests that determine which anti-HIV drugs a virus is resistant to be reported.

While AIDS groups in a few states opposed HIV names-reporting, few groups are even questioning, let alone opposing, what appears to be a steadily expanding list of reporting requirements for HIV-related tests.

And with new testing technologies emerging that could allow for monitoring of the sex practices of Americans with HIV, few groups are asking if there should be limits on the information the government can collect or how such data, if it is gathered, can be used.

“Any critique about privacy or any notion about resistance to government is missing from the picture,” said Dr. Jean Flatley McGuire, a professor at the Institute on Urban Health Research at Northeastern University in Boston.

Part of the reason may be that gathering this data has not received the sort of press coverage that debates over HIV names-reporting have received.

“I think it’s probably more likely that there is less knowledge about this type of reporting,” said Lance A. Gable, a fellow at the Center For Law and the Public’s Health at Georgetown and Johns Hopkins Universities.

Gable’s center participated in a study done for the federal Centers for Disease Control and Prevention (CDC) that looked at what data public health agencies were collecting, how they were using it, and the ethical issues involved. They interviewed public health officials, staff at AIDS groups, and people with HIV.

“There seemed to be, in all the conversations I participated in, very little resistance to collecting this data,” Gable said. “There was generally a consensus that there were some uses of these data that were important, but it was also important to make sure that these data were not misused.”

For instance, people did not like agencies gathering information for one purpose and using it for another.

“Any time public health department would consider using data beyond the purpose it was collected for that was a particular concern,” Gable said.

Though they do have some policing powers, the health agencies that are collecting this information are not viewed in the same way as law enforcement. And they have protected the data. While there have been some instances in which the confidentiality of these records has been breached, the known cases are relatively rare.

“The context is that health departments have excellent records in maintaining the confidentiality of these records,” said Dr. Jeffrey Levi, a professor of health policy at George Washington University and the former head of the National Gay and Lesbian Task Force.

Like Mississippi, many states use the information to identify new cases. That data may also be used for epidemiological studies, sex partner tracing, to determine what the state may spend, and the amount of federal dollars that will be sent to each state.

“That has substantial implications,“ said Benjamin T. Laffoon, a research analyst at the Missouri health department. “Funding is attached to that. It also predicts the amount of care the state is going to pay for.”

States also use the data as a surrogate marker to see if a person is in care. If a person is getting viral load or T cell count tests done, they are presumed to be seeing a doctor.

“One of the major things that it tells us is if they are in care,” said Jerry Burkman, division director of HIV/STD at the Indiana health department.

Indiana uses the T cell count test results to do a kind of macro-analysis on the efficacy of its treatment programs. If those counts are rising, it suggests treatment is working.

“We’re looking at overall quality of the program,” Burkman said. “Are we helping people to stay healthier?”

All of this data may not be the end of the information that state and local health agencies will collect.

Earlier this year, the CDC required 65 state or local health departments and roughly 130 CDC-funded AIDS groups to use a Web browser-based software application to report on how they are fulfilling their contracts. That included gathering information about the sex lives and drug use of their clients. The CDC suspended implementing the system after agencies complained loudly.

Another technology, called pooled PCR testing, can identify people who are newly infected, but are undetectable on a standard HIV test. In 2003, that technology allowed health officials in North Carolina to identify and intervene early in an HIV outbreak among college students. That type of testing could also be seen as near real-time monitoring of legal sex acts among consenting adults.

Similarly, another technology, called nucleotide sequencing, can identify people who are infected with strains of HIV that are similar or the same, potentially allowing health authorities to find and intervene in clusters of people where new HIV infections are happening.

Neither pooled PCR testing nor nucleotide sequencing is in widespread use and there are significant obstacles that might keep either from being widely adopted. Both have proponents. If they are used, how will they be used?

“Whether or not these kinds of surveillance approaches will be used for arguably good purposes or for malevolent purposes will depend very much on the professional culture of the health departments and also whether the professional culture be sufficiently powerful to resist political pressures,” said Dr. Ronald Bayer, co-director at the Center for the History and Ethics of Public Health at Columbia University. “All health departments have an interest in this information not being used in malevolent ways.”

What is real today are proposals in New York that would allow health departments to use the data they already collect to monitor the care of people with AIDS. New York State leads the nation in the amount of HIV data it collects. It may also be seeing the beginning of opposition to that data collection.

In a series of 2006 public meetings organized by New York City’s health department, many people with AIDS and AIDS groups have loudly opposed a legislative proposal for broader public powers to collect and share data put forward by Dr. Thomas R. Frieden, the city’s health commissioner.

“My issue isn’t that all data or the government is bad,” McGuire said. “What does it mean that we think there is no cost exposure to the person who gives up his information… We don’t have enough of a critical analysis about saying just trust government. Why?”