Dateline:  03/02/01

Workers at the Berkeley Free Clinic took an official stand this week against the new "risk assessment form" that has been in effect since January and is used to collect risk factor and identifying information from people getting tested for HIV, some of whom should probably think twice about documenting things like drug use or unprotected sex while simultaneously leaving clues that reveal who they are.

What is most alarming about this new request for information is that the data is collected at anonymous testing sites throughout California. Unlike confidential sites, which take names in confidence but can link a positive result to follow-up care, anonymous testing was supposed to be the one place to go free from any type of identifying information. It was also supposed to be preserved at all costs no matter what happened with HIV reporting, the much-debated method of tracking new HIV cases through names or unique codes collected at confidential sites. Now it looks as though the anonymous outlet that has always made HIV reporting acceptable has a potential for misuse worse than any imagined nightmare at a names-based site.

The great debate

Aside from self-administered blood analysis like store-bought home kits, most HIV testing in California has occurred in two different ways. Confidential testing, as noted, collects identifying information but keeps that information between the health facility and the patient. Anonymous testing has traditionally issued a code number to both the blood collected and the person returning for results; if demographics (like race or age) were collected there were no corresponding identifiers (like birth dates or letters of the name) that could be leaked or mishandled. In fact, Berkeley Free Clinic board Chair Beth Podzin (sic) says state law prohibits such practices, and she points to a passage from the state health department's A Brief Guide to California's HIV/AIDS Laws, which reads, "In anonymous HIV testing, the identity of the test subject is not linked to the test result. In accordance with Health and Safety Code Sections 120885-120895, anonymous testing … is free and does not collect any identifying information from test subjects."

When HIV reporting became a national issue a few years ago, the argument was made by state health officials that understanding the epidemiology of AIDS was becoming more difficult as the illness became more manageable. Since HIV is only reported to the state when a person develops full-blown AIDS, there is no way to arrive at a firm estimate of HIV seroprevalence, and without this more accurate number, regions hardest hit by the virus will not be targeted for funding and resources. HIV reporting, therefore, requires that HIV cases are reported as soon as people at confidential testing sites test positive.

But because many people get tested multiple times, there must be a way to account for all the positive tests without duplicating any of them. The easiest way to do this is by using the person's name, already a part of the record at a confidential testing site. This is also the scariest way to track HIV, as we are not even 20 years past the days of quarantine scares, and still live in a climate of fear and HIV criminalization. AIDS activists have therefore argued for unique identifiers instead of names when HIV reporting is inevitably implemented in California.

Unique identifier legislation, as authored by Assemblywoman Carole Migden (D-San Francisco) and passed by state lawmakers (and later vetoed by Governor Gray Davis) would have created a code specific to each individual at confidential testing sites using pieces of his or her birth date and other information. No matter what method of HIV reporting was used, however, it was understood that anonymous testing would remain unaffected so that people who were seeking medical care or coverage could go through confidential sites, while people who just wanted to know their status could do so without identifying themselves. Tampering with anonymous sites, said activists and lawmakers alike, would deter many in high-risk communities from getting tested at all.

The one safe place

It is exactly this way of thinking that has made anonymous testing a place for people to open up and trust their counselors more so than if they tested elsewhere, according to another worker at Berkeley Free Clinic.

"When the state says people don't have to give this information when they're asked to, that's a lie, because there's a trust level under anonymous testing which at this point cannot be altered," said the worker, who did not want his name used. "This is a very rich research area for the state. People at high risk and low risk are giving information where they believe what they're saying is private. The state is trading trust for quick gains in research that eventually will backfire."

The concerns at the free clinic are not with the state breaking trust so much as with privacy leaked at other levels. For one thing, according to Podzin, the information collected could very easily be plugged into another data base not linked to health concerns at all.

"The laws are always changing, and the health department can't predict what will happen," said Podzin, who fears in a worst case scenario that law enforcement could collect behavioral information from a person under criminal investigation and cross-reference test data with a suspect's known demographics.

"Police already shake down our outreach workers on the street, who hold information about people's drug use, for instance. As it stands, our workers would go to jail before they gave up identities, but this new form puts them and their clients at great danger," said Podzin. (sic)

Another Berkeley Free Clinic worker said that the additional information made it easy for leaks at the local level.

"Before the form, all I had to do to not know someone's business was to make sure I didn't see their testing number," he said. "Now the temptation is greater for a worker. If someone you know comes in and you know their date of birth or ZIP code, you could easily match up a test result with an identity."

There is also a section on the form that asks how a person was referred to HIV testing. If that person checks the box that he or she came on the advice of an STD clinic, that gives yet another trail of information useful in determining identity.

The state forms are in use throughout California; a different and more extensive form is in use in San Francisco, issued through the Department of Public Health. According to the concerned activists, the San Francisco form – which asks for age, race, birth date, the first and last letter of the last name as well as the number of letters in the last name and the first letter of the mother's maiden name (in addition to documenting behavior such as unsafe sex and drug use) – may soon be in use at many testing sites throughout the city, like the AIDS Health Project run through the University of California, San Francisco (calls to AHP to confirm this were not returned).

To the activists who are raising objections, their reasons for doing so are simple. Anonymous testing should be separate from testing systems set up to collect identifying data. The word anonymous, they say, should continue to mean anonymous.