Philadelphia AIDS research raises privacy concerns
June 05 2004 12:00 AM ET
AIDS activists in Philadelphia are concerned that the confidentiality of the region's HIV-positive residents may be jeopardized by a study by the city health department to gain information on the habits and needs of AIDS patients, the Philadelphia Inquirer reports. The study, begun about 18 months ago and paid for with federal funds, includes interviews with AIDS patients about a number of issues, including their sexual practices and medical needs. The patients are identified for the study by the city's AIDS database, which has some AIDS activists alarmed that the confidential information is being misused.
City board of health member and executive director of the AIDS group Philadelphia FIGHT says she believed the database would be used only to gain general demographic data on the region's AIDS patients and not be used to obtain contact information. AIDS Law Project of Pennsylvania executive director Ronda Goldfein also believes the database is being misused, and says state law allows disclosure of the names of people in the database only for HIV surveillance activities, not for research.
Assistant city health commissioner Joseph C. Cronauer says the research has been approved and is overseen by the federal Centers for Disease Control and Prevention and the city health department's ethics review board. He also says participating is voluntary, and that all AIDS patients interviewed sign consent forms and are paid $20 for their involvement in the research project. Goldfein says she has not received any complaints from the AIDS patients contacted by the researchers. The research project is scheduled to continue through the end of June.