Guidelines for Confidentiality in Research on AIDS

Abstract

The identification of Acquired Immune Deficiency syndrome (AIDS) three years ago has created a crisis of confidence. Persons with AIDS and others who might be research subjects recognize that research is essential to understand, treat, and prevent this devastating disease, yet they are concerned that information divulged for research purposes might be used in ways detrimental to their interests. Unless they have confidence in the system designed to protect their privacy and in the people to whom personal information is entrusted they may provide invalid or incomplete data. The problem, then, is: What procedures and policies will both protect the privacy interests of research subjects and enable research to proceed expeditiously? Now that major research efforts are being undertaken to tackle the many puzzling aspects of AIDS, this question has become an urgent one. These guidelines, developed by a multidisciplinary group representing diverse professional, public and social interests, are designed to provide the basis for the cooperation of the research community and the subjects of AIDS research. Addressed to research institutions, individual researchers, institutional review boards and public health departments, the recommendations seek changes deemed necessary to afford the fullest degree of protection for confidentiality compatible with sound scientific research.