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January 6, 1993

AIDS and Confidentiality: Making Exemptions to Encourage Research

JAMA. 1993;269(1):47-48. doi:10.1001/jama.1993.03500010057027

To the Editor.  —The interplay between public policy and scientific research is highly visible in acquired immunodeficiency syndrome (AIDS)—related research. However, legislative mandates sometimes unintentionally interfere with the conduct of such research. While conducting a study of cause-specific mortality among a national cohort that includes human immunodeficiency virus (HIV)-positive persons,1 we were recently refused cause-of-death information from Illinois death certificates for three cohort members. Illinois state law prohibits disclosure of cause of death related to AIDS and HIV infection for specified individuals and provides no exemption for scientific research, according to Steven Perry, Illinois deputy state registrar.2 We have requested cause-of-death information for this study from 47 other states, the District of Columbia, New York, NY, and Puerto Rico; none has refused to provide such information based on AIDS confidentiality regulations. Protection of the confidentiality of persons with HIV infection is vitally important. However, legislators in all states