ACLU Tells CDC New Guidelines for HIV Tracking Violate Privacy,  Ignore Public Health Research

January 12, 1999 12:00 am

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Tuesday, January 12, 1999

WASHINGTON — The American Civil Liberties Union today filed comments with The Centers for Disease Control and Prevention, calling the agency’s draft guidelines on HIV monitoring “fundamentally misguided.”

The CDC draft guidelines recommend that states institute case reporting of people who test positive for HIV. The guidelines clearly state a preference for names reporting over the use of unique identifiers, a move that has come under heavy attack from the ACLU and other groups, who charge that the guidelines ignore strong scientific evidence.

“The clear weight of scientific studies shows that mandatory names reporting discourages people from getting tested for HIV,” said Christopher Anders, a legislative counsel for the ACLU. “Why the CDC is proposing guidelines that violate basic privacy rights — and run counter to the weight of public health research — is simply incomprehensible.”

Just last month, the CDC released a survey that showed some gay men avoid HIV testing because they don’t want their names released to the government. According to the CDC-funded study, 19 percent of the more than 500 people surveyed by the CDC said fear of their name being reported was one reason they hadn’t been tested.

“The privacy ‘safeguards’ included in the proposed guidelines are hollow,” said Michael Adams, staff attorney with the ACLU’s HIV/AIDS Project. “If privacy was a true concern, the CDC would not be bent on using names-based reporting.”

In that vein, the ACLU also criticized the CDC for prematurely dismissing alternatives to names-based HIV reporting, such as the use of unique identifiers.

“The CDC refused to fund the development of non-names-based HIV monitoring programs, then launches criticism at such systems,” Adams said. “Yet a unique identifier system has proved remarkably effective in Maryland — the one state that has made a serious attempt at HIV surveillance with out names.”

Under a unique identifiers system, each person who gets tested for HIV would be assigned a random and unique alpha-numeric code, thus insuring their privacy.

“Maryland’s successful development of a unique identifier system is proof positive that there are viable alternatives to names-based HIV reporting,” Adams said. “The Maryland example also proves states may be able to succeed even without CDC funding. But the CDC should be supporting those states that choose unique identifier systems.”

Although the CDC recommends that states maintain the availability of anonymous testing, the guidelines are likely to have the opposite effect. Nationally, eleven states have eliminated anonymous testing after starting names reporting, the ACLU said.

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