Pennsylvania: AIDS Research Raises Privacy Fears

An effort by the Philadelphia Health Department to gain information about the habits and needs of AIDS patients in the city has some activists concerned about patient confidentiality.

About 18 months ago, as part of federally funded research to help target prevention and treatment money, health workers began interviewing AIDS patients about such matters as their sexual practices and medical needs. Patients are invited by their health-care providers to participate; they sign consent forms for the one-hour interview and are paid $20, said Joseph C. Cronauer, assistant city health commissioner. The research is approved and overseen by CDC and the Health Department's ethics review board, Cronauer said. The research runs through the end of June.

But Board of Health member Jane Shull, who is also executive director of the AIDS group Philadelphia FIGHT, said at the board's May 18 meeting that the city's AIDS database was being used inappropriately. She said she thought the plan was to use the database to gather basic demographic information, not to contact people.

State law allows disclosure for surveillance but not research, said AIDS Law Project of Pennsylvania Executive Director Ronda Goldfein, who said she has not received any complaints from people contacted for the study.

Bruce Flannery, executive director of the Pennsylvania Coalition of AIDS Service Organizations, which represents more than 40 groups, also expressed concern about the protocol for contacting subjects.

Philadelphia keeps its AIDS registry by name but uses codes for HIV cases. With the support of the mayor and the governor, city AIDS activists fought successfully for a coded HIV system after arguing that keeping records by name might discourage people from being tested. The state health secretary granted permission for the coded system in March, ending an extended standoff. The state gathers the information from everywhere else by name, but reports it to CDC using code.

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